Let Your Life Speak

Panera Bread on a Wednesday Afternoon

2010-12-29T22:07:00.000-08:00

I have been absent online however not absent in my writing. I have many things I am intending on posting in the near future. I thought I would post this now, since it has been so long since I have added an entry. I am upset with myself for not dating this. I believe it was written during early November of this year. I wrote it while having lunch by myself at Panera Bread.

Too tired to return to my car. Nostalgic. Missing simple times. Being ten years old, sitting in my grandmother's kitchen. When hand written letters were delivered with a stamp and by real people. Before I knew of such things as war. Believing that playing outside with my cousins, Josh and Seth, justified all reasoning for why I existed. Watching the sun stretch her beautiful arms over the fields behind my house while softly kissing my nose and leaving golden freckles as proof, her fingerprint, that she had once been there. That I too, was once young and happy, and most of all, healthy. A time when worries flew past me and cares swam over my head. Remembering the smell of fresh hay at the barn. The way I tropped through the mud behind my father across the ground, my three steps to keep up with his one. The excitement over a new pencil box and crayons for school. These are the things my dreams are made of as I sit here in a Panera Bread on a Wednesday afternoon. These words are peaceful and real. Almost as if being spoken by a voice over at the end of a movie, a fairy tale even, where I ride off into the sunset blessed to know that I too, was once young and happy and most of all, healthy.

Heart Cath

2010-10-14T16:27:00.000-07:00

I was admitted on Monday to the hospital. That was also the first scheduled day of my evaluation. Evaluation had to be canceled since I was sick and really needed a round of antibiotics. However they are able to perform many if not all of the tests for evaluation while I am in the hospital. That really gives me a sense of comfort. I like the idea of being in a familiar setting with my nurses and doctors while I have some of these procedures performed. Yesterday was the first invasive procedure I have had, a heart cath, it was not exactly a walk in the park.

The day went all wrong straight from the beginning. I had been placed NPO at midnight which basically means I can't have anything to eat or drink. I was told the procedure would take place around 7 am. However 7 came and 7 went, no sign of anyone. So around 10 am my nurse tells me that the test is going to take place around noon. Guess what?? Noon came and noon went, again no one comes for me. By this point I was beginning to become weak. The antibiotics take such a toll on my body and it doesn't take much for me to feel really lousy. I usually snack on fresh fruit through out the day and drink tons of water. I never realized how much my sick body depends on those things until I could no longer have them. Several other things occurred as well that I am not going to discuss here, but to say I was upset is an understatement. Finally at 3:00 pm they showed to pick me up.

They took me down to the cardio/vascular holding area and hooked me up to several monitors. I basically just sat there while they entered all of my information into the computer. Around 5:00 the doctor who would be performing the procedure came to see me. He was a short man with thick lens glasses that framed his eyes. He was a bit quirky and sounded like the character Napoleon Dynamite when he spoke. I asked him exactly what the procedure entailed. He began explaining to me that I was not having the normal heart cath that most patients have to check for blockage, rather a right heart cath to measure the pressure in my lungs. He wanted to go in my neck instead of my groin area however my port is placed in the exact location he was hoping to use. So he looked at the other side of my neck, hoping to use it and continued explaining to me what would take place. He said he would snake the catheter into a large vein next to my artery and wind it around my lungs and back up to my heart. Then he would go through a series of methods that would help determine exactly how much pressure I was holding inside my heart. I was completely calm and peaceful during the beginning of his explanation, because I was previously informed it would be going to my heart. I was actually even a bit relieved to discover he was NOT going into my main artery like I had been told upstairs. So all of this sounded like good news to me. However, when he mentioned snaking it through the blood vessels in my lungs, I began to panic. That was information I had not been given, therefore not allowed to process ahead of time. The tears came instantly. I knew my lungs are very fragile because of the steady decline I have experienced with my health over this past year. The first thing that came to mind was collapsing a lung. So I asked and did not get the answer I was hoping for. He said yes there were risks of not only collapsing the lung but also puncturing it. My mind began to swirl and I instantly became dizzy. I am not sure if it was because of the information I was being given, the fact I had not eaten in almost 24 hours or a combination of both. Regardless, I was at a breaking point. I thought I was going to scream. He tried to talk to me calmly and quickly realized I could not calm down. He said I would have no more than 15 minutes to decide if I wanted to continue or reschedule. Several verses came to mind while all of this was happening, first "Cast all your anxieties on Him", and "God did not give me a spirit of fear, but of peace and a sound mind". I just kept repeating these over in my head as I concentrated on breathing and thinking of the benefit of this test. It would get me one step closer to a life free of tubes. Tubes. Tubes for treatments, tubes for medications, tubes for oxygen. They are everywhere and I despise them. God did not create me to be tied down. The more I thought about how much I wanted to throw away every tube in my house, never drag an iv pole down the hall, or an O2 tank to the grocery store again, the more determined I became to do whatever it takes to get the life I dream of having.

So, I wiped my eyes with a tissue, swept my hair out of my face, sat up a bit taller than before, and said, "Let's get this done." With that the doctor handed my chart to the nurse and the next thing I know I am being wheeled into the operating room. So many thoughts were racing through my mind. I began imagining what it is going to feel like one day to be rolled into an even bigger operating room, knowing my disease is going to be cut from my body. Knowing that somewhere a stranger is going to give me a gift so precious that I can not even fathom. It was so overwhelming.

The room was a standard procedure room. Not too big, not too small. I crawled over onto the long steel table and the doctor and his team entered a small room next to the room we were in. I am not sure if they were getting dressed or just discussing how crazy they thought I was, ha, but either way I know they were out of the room for no more than a minute or two. I am such an observer and I immediately began looking around the room, trying to see if I could guess what instruments would be used and what their purpose might be. My fear was beginning to fade. And even though the room was silent, it was loud, as if there were an entire congregation of people in there with me, all wearing watches that were simultaneously beeping. =) I knew as I felt myself melt into the cold metal of the table while I took deep breaths of oxygen through the tube against my nose that simply, God was with me. He was there, in that moment, in that room.

The whole procedure lasted about 30 minutes, 15 minutes of that being prep time. We did decide to enter through the groin area. The doctor said there was about a 0% chance of collapsing a lung that way. I didn't feel anything other than maybe some small flutters around the spot he entered. I got three numbing shots and literally could not feel half way down my thigh, so he did a really great job to make sure I was comfortable. I did ask a lot of questions. I wanted to know what tools were used for what. Not out of anxiety but rather curiosity. I do find it all fascinating. The human body never fails to impress me. When you begin to learn about it, you realize there is absolutely no way we evolved, but were rather created. It is just so amazing the way it all works together. You realize God truly does have a plan for it all.

Love you guys!!!

P.S. My results came back and I have MILD pressure in my heart, even more mild than what they originally thought. They said it was no more than what would be expected with someone with Cystic Fibrosis! So that is great news!!! =)

The First Appointment

2010-09-24T12:34:00.000-07:00

Well the bad news is I have neglected this blog, however the good news is I have NOT neglected anything else in the process. Since the start of all the transplant hassle I have been focusing more on my family, friends, remaining healthy as possible and well just living in general. So I have not been able to spend as much time writing as I would like, but this was a choice I made. It wasn't like I let the time slip away from me. Actually it is the right opposite. I have grabbed on to time with both hands and am refusing to let go. So anyway with all of that being said I guess I need to give an update!

As most of you know by now I had my first transplant clinic appointment. This was basically a "meet and greet". We chose to stay in a hotel over night for this visit since we had to be at the clinic by 7:30 that morning. I had received my schedule by mail the prior week. So I was pretty informed as to what my visit was going to be like. So at 7:30 I had to be at the lab. My mom met us there since she didn't want to stay at the hotel. They were super nice. I have had labs drawn there before but it has been several years. I am a really hard stick and I had been drowning myself in water since around 5 am when I woke up and also the few days prior. I wanted to be really good and hydrated. I was explaining to the lab tech how hard of a stick I am when she told me to calm down and quit being wild. Ha Ha It was funny. Sam and I both looked at each other and laughed. So she stuck me once and got the blood! So happy about that! That was what I was worried about the most! I didn't want to be stuck a lot and be late for my next appointment. I was so thrilled I nearly jumped out of my chair! The only labs they needed were basic ones, like they would take during a hospital admission, so it was pretty simple.
Then I had to be at xray at 8:00. Xray is so easy but soooo annoying. I know I am complaining over something little but seriously I HATE having to get undressed just for a thirty second procedure. I was also having to wrestle with my O2 tubing. We had my travel tanks that day which made it fairly easy. I was surprised at how easy I could walk around with no help at all. But I was VERY tired by the end of my final appointment.
Next, was my PFTs. I mean that test does not even phase me anymore. Since me and my doctor talked about transplant and it is here now and happening, those numbers mean nothing to me. Don't get me wrong, I don't want to see them drop any but the anxiety that use to come with that test is GONE! I actually laughed when my numbers came on the screen. I blew three times as hard as I could and the tech asked if I wanted to try again. Sam and I laughed. I looked at her and said, "I am here for transplant clinic." No need to stress about them anymore. Of course I would love to have an FEV1 of about 70, ha even 40 would be nice, but these numbers no longer tie me down. There is a freedom in this for me. Of course I wish it wasn't time for transplant, but there is also this relief I feel. Like help is on the way almost.
Anyway, no time to be deep and significant, time for details now, deep can be later. Then we went to the actual appointment. It was scheduled for 9 that morning and I was right on time! I felt really great about that. I wanted to really show the doctors I could pull my own weight and am responsible. Being on time is everything. I felt like I was walking into the most important job interview ever. Ha. So I get there and everyone, I mean EVERYONE was extremely nice!! They were so upbeat and positive, not at all what I was expecting it to be like. I just assumed it would be almost like a funeral, but it wasn't! They are not in the death business, although it does happen from time to time, they are in the giving life business. When I walked back to the room they were putting me in, there was this old man in a wheelchair with O2 and a mask on (to protect from germs) just like me. When I walked past him, his eyes opened wide, he pointed at me and looked at his wife and said, "She's just a baby." Oh man, that nearly broke my heart. I was doing so well. But when he said that I felt my heart twitch a little for sure. I just wanted to tell him that I was strong and I was going to be alright. It was just so sweet, it was like he was concerned for me. You don't meet strangers who are concerned for you anymore, it is a rare happening. It was really great. It meant a lot to me.
First a doctor came in, he wasn't a student I don't think, but he wasn't exactly on the transplant team either. His name was Jason and he was really nice. He asked a lot of questions. When he went out of the room I began to stick my head outside into the hallway and noticed the two doctors I am familiar with that take care of me in the CF clinic and who are also on the transplant team were no where to be seen. I did begin to panic a little. I asked a nurse who was walking by where they were. She informed me they were not there that day. I was a little disappointed. I had hoped seeing familiar faces would make it not so scary. However once the transplant doctor who was there came in and introduced himself I was comfortable instantly. He was very personal and had a great "bedside manner". He laughed a little which eased up the mood for sure. He basically just said I did need the evaluation. He asked me if I had any questions. Of course the one question I instantly asked was about the heart cath. I am nervous about it. He was so honest with me, and he has no idea how much I appreciate that! He didn't make it out to be a bad situation, but did warn of the risks as well. I felt really confident after talking to him about it. I mean the way I look at it is if I can't make it through a heart cath, then I really can't make it through a transplant. So there is no reason to worry about it. It is just part of the evaluation and it has to be done. I brought in a three ring binder with ALL of my medical records I have been collecting over the years. They are even organized under tabs. Ha. I had a fresh new tab for transplant. I was so proud of myself. I really wanted to show that I am worth this. This is a huge shot, a chance these guys will be giving me. They have to trust that I am willing to do my part and take care of these new lungs once I get them. I want to prove to them I can be trusted, that I will literally guard them with my life, and never take it for granted. Maybe it appeared that way. I hope so.
Then I met with a transplant coordinator, not mine because she was busy but a different one. They will be giving me visits from now on when I am in the hospital, not for my care but rather social visits, which is so awesome!! I am really excited about my new team caring enough to come around when they don't have to. So that was that. We left around 10:00. Really short and to the point. They did say I needed a letter from my dentist saying I have good oral health as well as my gynecologist. Fun stuff. The greatest part is I didn't break down, not even once. I wasn't a babbling idiot like I thought I would be. My doctor put me on anxiety meds when I came home from the hospital and after about a week I ditched them. I was really starting to wonder if that was the best thing to do but you know, I have been praying intensely and it is like it is gone. Whatever "it" was that was causing me to worry all the time has left. I have a peace that is hovering around me. Sam can feel it too. God has this taken care of. I am actually kind of excited. Not saying I am completely fearless now, because I am not. I am still human, and I still have moments when my daughter hugs me and I don't want to let go, or my husband is telling me bye and I can't quit saying I love you. But you know it's a gift. I met with my pastor about two weeks ago because I was so depressed and about to lose my mind. He told me this was a gift. How lucky am I that I get a chance to get everything in order? To call long lost friends? To make amends? To heal relationships? Some people die instantly, never knowing it is coming and they don't get the chance to write their daughter letters for the future and tell those around them how much they mean to them. I do, I get that chance. Another point my pastor helped with were the WHAT IFS. There are so many of them. He said from now on, answer them, then they will go away. So I did. I started answering the, What if I don't make it? What if the lungs don't work? What if, what if what if. Once I answered them, that was it. It took the fear away.

So today I am at peace. My evaluation is scheduled on Oct 11, 12, 13 and the 19th and 20th. My heart cath will be done on the 13th and my TB test results that day. That is it for the 13th. They scheduled the cath on a day by itself for me. That made me feel a lot better. I just know I am not going to feel like running around afterward.

Please be praying for me, for us, for this whole situation. Now I have to go pick up my purpose, she just got out of school! Love you all!!

These Moments

2010-09-06T10:55:00.000-07:00

In this moment, my body is
sick.

In this moment, I am a daughter.

In this moment, I am a sister.

In this moment, I am a bride.

In this moment, I am a friend.

In this moment, I am a mother.

In this moment, I am a fighter.

In this moment, I am a wife.

In this moment, I am an artist.

In this moment, I am a purpose.

Yes, in this moment, my body is sick, but I can assure you, in this moment, my spirit is well.

I can do all things through Christ who strengthens me.
Philippians 4:13

What is and What is Yet to Be

2010-08-20T09:54:00.000-07:00

I have been trying to decide the best way for me to write this post for several days now. The truth is there is no easy way to tell any of you this. I figured by now I would be pouring myself into this blog, documenting every single emotion, telling all how I feel, but honestly, I am not sure how I feel just yet. So I am going to write this the best I can. As a writer I wish there were some great imaginative words for this part. But there isn't. You are my audience. You guys have been so loyal to me. So I am going to be honest with you. Sometimes honesty isn't pretty. Sometimes it is raw, real and ugly. That is how today's post is going to be. I can't stress about my sentence structure this time. My mind is too chaotic to even try to make it something great. Who knows? Maybe it will be great simply because it is real. Regardless, here is my update.

On the evening of Tuesday, August 10th, 2010 roughly around 7 pm I had a visit from my doctor who delivered news that will forever change my life. I am nearing the end stages of my disease. What does that mean exactly??? For me it means, Cystic Fibrosis has taken up residency inside my natural born lungs and despite my best efforts refuses to improve nor leave.

I have lived for about the past five years with my numbers in a critical state, with the fear of this new news lingering over my head. I have managed through a lot of blood, sweat and tears to maintain my disease, stabilize it, and keep my numbers hovering just well enough to dodge my new reality.

I do not feel defeated nor ashamed of my fight. I know I have put forth 200% of what has been asked of me. I have lived well and I have lived happy. However in the past six months my health has taken a horrible decline. CF has proven once again the monster it truly is. I am going to soon be faced with decisions that literally make me shake uncontrollably all over just to even think about them. However, I know GOD'S TIMING IS PERFECT!!!! His plan for me is WITHOUT flaws!

Not only have my numbers declined to around 25% now, but my quality of life is no longer what it once was. It terrifies me to see how quickly CF can step in and destroy everything in its path. In these short six months, I have went from working out at the gym two hours a day, running daily errands and simply just living to barely being able to walk from my bed to my kitchen, depending on oxygen certain times through out the day and planning my daily activities around how much energy I may or may not have. Some days I find myself in denial of it all. I have good days when I require no oxygen, and am able to do daily activities. However then I walk up a flight of stairs and it knocks me flat on my back and my reality sets in. My mind begins racing and I wonder how did I get here? This was not supposed to happen to me. I was going to be different. I was going to beat this thing.

The great news is I still can. The fight is not over, yet it has only just began for me. I have a chance to take back everything Cystic Fibrosis has ever robbed from me. I can have a double lung transplant.

While a transplant is trading one set of problems for another, it will enable me to become the person I have always wanted to be. I will be able to run, climb stairs and even climb mountains if I want to! With nothing slowing me down!! This will be my second chance at a life I have never truly had a chance to live!!

My team feel as if I am ready for the evaluation. For five years now I have been holding them off, however my body is telling me now is the time. I may not be listed right away because they still believe I may be a bit premature with my health. They feel I still have some time with my natural lungs yet. However results of a heart test in the hospital revealed I now have mild Pulmonary Hypertension. What is happening is the pressure is building up in my heart because my lungs are working so hard to breathe. This explains my shortness of breath and need for the O2. The doctor is not concerned but feels this is a sure sign of progression of my disease.

Their main concern right now is if I were to get sick (suddenly) this upcoming winter (as in flu, etc.) and need new lungs right away. If I have not been evaluated then I can not be listed, so for extra precautionary reasons we are going ahead with the evaluation. However, my doctor did mention if for some reason I had the evaluation done and we realize I am much sicker than what we originally thought then I could be listed right away. So there is a lot of unknowns until I go to meet the transplant team. He did say that he imagines, sick this winter or not, I would be listed within the next 6 months to a year, possibly two years, depending on if my health stables off where it is now, or continues to decline.

My first step is to meet with my transplant team. That will happen this month. Then my actual evaluation will be done in September. It will consist of roughly four days that I will have to stay in a hotel in Birmingham and will have numerous tests ran each day. In short, I am not looking forward to it! I hate nothing more than being touched, poked and prodded on. You would think after all these years, it would be a walk in the park for me, but no. I don't like it now just as much as I didn't like it 15 years ago. I have never become use to being sick. It has always felt foreign to me.

Oh and side note for all my nurse friends who may be reading this I would like to add::::You know
those beautiful veins I have across my wrist, the ones I fight you guys for every time you do blood work. The ones I always insist I am saving for a rainy day??? Well guess what!?! I looked outside and it's pouring! This is just the situation I have been hoarding them for! So I am praying the lab work, because I know there is a ton of it that has to be taken during evaluation, will go a bit smoother since they will be able to use my really good veins. So I guess being stubborn will pay off somewhat. =)

So now what??? I am not really sure. I am new at this. I am still comprehending it all. I have some days
where I have peace about it, while others I cry for no reason at all, and at the oddest times. I can tell you this, my daughter has never looked as beautiful as she does now, my husband has never smelled as sweet and food has never tasted as good! I tell everyone I love them to the point I know they think I am crazy. Not because I think I am dying, but rather because I know we should say it more often, simply smother ourselves with the ones we love, for all we have in this life is each other.

The most important variable in all of this is GOD. He has His hand all over this. I know when He created my donor's lungs He knew one day they would find a home inside my chest, so He made them perfect, not only for the life they would live with my donor, but also for the life they would GIVE to me!

A lot of things I still can't wrap my mind around. Like what it will feel like carrying a pager, waiting for it to go off to let me know my new lungs are ready. Or my donor, who I am already deeply saddened to know the life they will lose so I can gain mine. Or how about the mind blowing fact that I will lay on an operating table while my disease is pulled from my body once and for all and replaced with the sweet miracle of life. I have been blessed to only have CF destroy my lungs. I have never had the additional problems other CF patients have. Recently a finding of my genotypes gave us a better understanding as to why I was born with it only in my lungs. So for me I will no longer have Cystic Fibrosis. That sentence is powerful.

It is all so overwhelming and I know there will be good days and bad days. My doctor has warned me that I will be much sicker than even this when my new lungs come. I simply can't imagine declining any further, but I suppose that is the way it happens. I do have dark times ahead of me but I am clinging to my Savior and I trust He will lead me into victory and glory for His name.

Everyone keeps asking what can they do for me now?? You may find yourself even as you read this asking yourself the same question. The truth is as far as this disease goes, this walk is between God and I. No one can take this from me, no one can make it better, no one can roll into the operating room for me. I have to do it. God will be and is with me. That I am certain of. So I will not be alone. What you CAN do are two things:::::: First, PRAY PRAY PRAY!!!!! Pray over me, pray over my family, pray over my doctors, pray over my donor and pray over my donor's family as well. I believe in prayer.

The second one is simple, just love me. Love me and let me love you. There is no medicine that can heal like love and right now I need not only to receive it but to give it as well.

As of now, I believe today is good, and tomorrow will be better. The battle will rage on and once again I will drop to my knees in deepest appreciation to my God that I am still here, breathing and living, one day at a time. That I too, get another day, another hour, another moment, another breath........

and simply........another chance.

Peace and Love, always Peace and Love.
I love each and every one of you forever.

"Even when life is bad, I can't complain because even then......I am still breathing."
-Summer Welch

Photography by Rtistic Images

The Phoenix

2010-08-14T20:52:00.000-07:00

The Phoenix

Do not be fooled by these devices I am tied to.

Do not be deceived by this monster that lives inside my chest.

For I am a phoenix.

And when you least expect it.

I will rise up from the ashes.

-Summer Welch

*Photography by RTistic Images

Real

2010-08-12T13:14:00.000-07:00

Have you ever seen the childrens movie Coraline? Do you remember the part where as she walks deeper into the magical world it slowly starts to unravel? That is what happened to me today. As I entered my Starbucks, located here in the hospital, I had an instant feeling something was amiss. It no longer appeared to me as a safe haven that I can escape to when being sick becomes too real. The lights didn't glow like embers, the people didn't seem as warm, and the big purple arm chair sat rather lumpy. As I sat there I realized it was only an overpriced coffee shop in a hospital. It no longer brought fond memories of home. It was sterile, it was ugly, it was simply just another part of this building. I am not sure why I felt this way. It was a bit overcrowded today. I did feel uneasy sitting around so many people. After all I have been here 24 days today, that is almost a month. A whole month that I have had limited human contact. But all the same the visit just did not sit well with me. I noticed nearly everyone had some sort of technical device that they were tied to. Whether it be sitting in front of them, or clenched in their hand as they talked to a dear friend or colleague.

One couple sat at a table for two. They were in their late forties, married, and not once spoke to each other. He sat carefully turning the pages of his newspaper as she starred blankly into her laptop. Everyone was so disconnected. I suddenly realized I don't want to be that way. I don't want the keys on my keyboard to be more familiar than my husbands hands. I don't want the glow of my screen to be warmer than my daughter's smile. I want to live. I want to experience life. Everything here is so sterile. I am afraid I have been here too long. Tomorrow I get to return to my home, my safe haven, my family, my friends, my church and my life. I will be returning not the way I came. I am different now. I am no longer disconnected. I have a burning desire to chase after my God with every part of my being. I only thought I knew what that was before now.....but I didn't.

My hope is in returning home I will be able to let my mind comprehend what my body is doing. As well as let my body comprehend what my spirit is doing and what my God has plans to do. Things are big right now. Everything is big. This is life and it is real. This is not someone else's story. It is mine. My story that will not be left untold. God is the author and I will spend each day patiently waiting with passion to turn the page to the next chapter. I know I am not, but as I sit here and weep with overwhelming emotion I say, I know the great I Am.

~Love~

Processing

2010-08-11T10:35:00.000-07:00

The doctor finally came. I am still processing a lot of the information. I do get to go home Friday! Home makes me feel whole again. Not to mention sleeping in my own bed. I just need familiar surroundings, people that love me and laughter, which will forever be the best medicine of all.

Once I have processed enough, I will write again. Maybe soon.

As for now, I will leave you with this. These are my plans for today, to simply put one foot in front of the other, and move forward.

And you-what of your rushed and useful life?
Imagine setting it all down
-papers, plans, appointments, everything-
leaving only a note:
"Gone to the fields to be lovely.
Be back when I'm through with blooming."
-Lynn Ungar

~Love and two fingers from a Grateful Spirit.~

Waiting

2010-08-10T11:43:00.000-07:00

22 days and counting.

Still waiting on my doctor to come see me.

I will post an update as soon as I have one.

Peace, Love and all of that Hippie Jive =)

Starbucks and Steroids

2010-08-05T17:00:00.000-07:00

Once again the doorway to Starbucks proved to be a portal into a magical land. I know it seems radical as I speak of it however you must understand and see from my eyes. Hospitals are so sterile. They are filled with sorrow, strange noises and smells. For me Starbucks is a staple. While it is a socialized staple and we all know how much I hate that, I still can't help myself getting swept away as I fall into the purple velvet chair in the corner with my warm cup of coffee. I let the world fall away and for just a moment I am not sick. I am not tied to oxygen. I am free. I am young, 27 years to be exact and have so much life ahead of me. For a moment I am an old soul with hopes and dreams and a chance to embrace each and every one of them.

My visit today was as always, satisfying. The register boy looked at my shirt and smiled. He looked at me and said, "Abbie Hoffman". I smiled back and said, "Yes". Small interactions make my soul well. So thank you Register Boy. You made my day by recognizing Abbie Hoffman. But more than that thank you for looking past the plastic strapped to my face. For not asking questions or giving unruly stares, but rather instead for treating me like a person, a real live breathing person. That made me feel beautiful and it made you beautiful too.

A rather large gentleman walked in, shabbily dressed. I watched him as he wiped the sweat from his brow. He paced back and fourth to the counter. He never placed an order. I noticed as he turned to walk away that he had cut the heels out of his shoes. He was wearing mens dress shoes that laced in the front, the color was black. You could tell they were seconds however he had shined them up nice. My heart fell out of my chest and into the floor as I watched him stride out of the coffee shop. He had cut out the heels simply because they didn't fit. He was doing the best with what he had. He suddenly became my hero. I wanted to wrap my arms around him. To take his worries away. To give him hope. I know if I live to be a hundred I will never forget him and in that moment that my heart broke. My situation turned to a puddle in the floor. All of a sudden it wasn't about me anymore. It wasn't about the demons I am facing. It was something much bigger. Bigger than me. So I prayed to God. He usually handles the big things....while I just sweat the small things. That is why I am not but I know I Am. =)

After he left I began to observe others shoes. I found myself surrounded by mostly doctors at this point. It was amusing for a brief second. Then I felt like they were invading my sacred space. A space I have made just for myself. A space I can pretend all is well. I decided then and there they should have a new policy....NO WHITE COATS ALLOWED. It isn't like I am denying them their cup of joe, just take off the coat, slouch a little, dig your feet in the ground and be human for a moment. Of course their shoes were all bright, shiny and new. I don't know a whole lot about mens shoes however I could tell the ones they were wearing had to cost a lot. Then I imagined that they had many more pairs just the same sitting at home in their closets. It made me sad to think of the man who had a pair too small to fit and then those who had more than enough. I suppose that is the law of life. Even in all of its infinite beauty it still remains unfair.

I noticed the doctor with the shiniest shoes of all could not stop starring at me as he made his way to the end of the counter to get his cup of gladness. He peered at me as if I was a medical oddity. I wondered if he was trying to guess my disease, sizing me up as he was. Then I realized I was playing too much into the scene, giving him too much credit. His thoughts were elsewhere I am sure, maybe a loved one at home he couldn't wait to get to, or his patient that lay fighting for their lives that he so desperately wants to save. He needs to be someones hero. Sorry Mr. Nice Shoes I can't give you that badge today. I gave that away already , to the man who would love to walk a day in your shoes. I already have my own doctor anyway, while he doesn't leap from tall buildings and I have never seen a shiny red cape peeking out of his collar, his bow ties make me smile, his compassion warms my heart and his honesty earns my respect. So I guess on some days his mind may wonder to me as I lay fighting for my life that he desperately wants to save. That doesn't make him my hero, that makes him my safe place. These days those are hard to come by and their worth is more than an unnamed hero.

Through the doors strides a girl, late twenties. She has on ordinary city street attire, bag slung over her shoulder. I can't help but notice her height. She is such an average height, not too tall, not too short. Maybe I would like being that way too. It does seem as if I am getting shorter these days. Am I shrinking? Or is just the world growing? Either way it makes me feel so small apart of something so big. Alas, this is life, dear friend. I suppose God saw fit for you to be your way and for me to be mine. Even the scar on my lip had a purpose. He knew the confidence it would instill into the very being of who I am. It is so odd to be surrounded by so many unhappy people, vain people. Always wanting the right clothes, shoes, hair. My scar is symbolic. It is the un ordinary in an ordinary world. It is me and I wouldn't have it...any....other....way. =)

My favorite part is when the children are cued into the scene. They are so innocent, healthy, and pure. They stare at me, not like I am a medical oddity, but rather with question. The best part about children is they don't just stare, they ask. What is that? Why do you have that? Adults only stare when you aren't looking. They stare with judging eyes. They assume. It makes me recall a music teacher I had in high school. On the first day of class I began to have an uncontrollable coughing fit while roll was being called. He paused, looked up and said, "Why don't you light up another cigarette?". He assumed something about me. That was a terribly embarrassing day for me. Two weeks later I became ill and had to be hospitalized. He asked one of my friends why I hadn't been attending class. Imagine the horror as he came to learn I had an incurable terminal lung disease. When I returned to school he pulled me aside after class one day and apologized. I accepted however it would have been nice if he would have offered it in front of the class since that is where he chose to single me out and humiliate me because of the monster living in my chest that I had been fighting off since birth. I have never forgotten that day and sometimes I wonder if he still assumes things about others or if he takes a child's stance and asks questions first. Questions are wonderful. What are we without knowledge?? Never be afraid to ask.

I have countless memories just like this. Memories of girls taunting and teasing me for coughing. Telling everyone around me that I wasn't truly sick and that I was "faking" it. How sad I feel when I reflect on these experiences, not for me, however for them. I think of how lives could have been changed if they would have just asked. I would have been willing to share. I suppose that is just what comes from being a teenager. We all thought the world revolved around us at some point. Ha Imagine our shock when we realized the earth circled the sun and our lives were so tiny, so small, like specks of dust. Being an old soul I learned this lesson long before my peers, which had its advantages and disadvantages. I can say now, at the age of 27, I am blessed beyond measure. Blessed to have encountered some of the most breathtakingly beautiful souls in this life of mine. Whether it be lifetime friendships or just passing moments, child hood friends or magical souls in a hospital Starbucks who remind me of what it is to be humble, thankful for the skin I have, the life I DO have. They are all a part of me. Even the ones I pass on the street, the nine to five in her heels on her cell phone trying to make something in this world, the homeless man who just wants spare change so he can once again choose between a warm meal or a steady drug to get him through the day. Each one of them I take something from, a lesson, a moment. Beautiful, precious moments. How can our hearts not swell when we stop....and look around? Life is happening all around us, beautiful precious life. What a wonder to be a part of this, this second, this minute, this moment. Moments rushing with urgency. It is like I am standing with my eyes closed in the middle of one of these city streets inside of a vibrant water color that would even give Picasso a run for his money. The smells, the textures, the tastes. This is LIFE! Don't let another second go by without truly experiencing it. It doesn't have to be big to change your life. Sometimes if you will just be still, tell your soul to be quiet and open your heart, you would not believe the love that will pour into you from the people around you, in simple situations. My prayer today dear friend, is as you read this, you will love deeper than ever, allowing your senses to take you to immeasurable heights, soak it in, not miss a second, and to throw yourself at the feet of your King. Cling to Him, turn to Him. Know today that you dear friend like me, know I am not but with every part of my being find peace that I know I Am.

Love to you all, today and forever.

Love. Love. Love.

"Everything Rides on Hope Now"

2010-08-04T21:27:00.001-07:00

It seems like when I find my comfort, my little spot in the world, that everything turns upside down. It is like the earth shifts beneath my feet and before I know it I am lying on my back starring at the clouds passing me by. It feels like everyone around me is moving in slow motion. It feels like I am in some horrible nightmare and I can't wake up. I am beyond confused and the decisions are coming quickly....too quickly. It is not what I am comfortable with. Trying to clear my head in a hospital room while the rest of the world sleeps in their warm beds breathing with their sweet lungs that hide safely under their ribs. The things that are so precious to me, that are life giving, others are walking around and not even realizing what it is they truly have. My mind races away with me and before I know it I am on top of a mountain surrounded by beautiful blankets of snow. The air fogs in front of my face as my warm breath escapes my lips. A mountain I climbed with my own two legs, my body, my healthy body and my strong lungs. My beautiful precious lungs. A gift. A true gift. Then a knock at the door and I am quickly ripped back into my reality, sitting in my hospital room with my oxygen tied to my face, because it is that time again. That time to sleep, the time I dread the most because it is then I surrender to this device and allow fake air to be pumped into my body. I hate the oxygen. I despise it. I see it as a weakness. I wish I didn't. I wish I could embrace it, however I just can't. It ties me to this disease and I hate that. I am such a free spirit. I need room to run and to stretch. I have one question yet I am getting what seems like a dozen different answers. All from respectable and intelligent people. Some days I feel like I am holding off a pack of wolves. I feel as if I am an experiment and they are just ready to ravage what is left of me at any second. Yet other days, the good days, I look at my doctor and my team and my heart literally swells because I feel so loved, so cared about, so safe. My doctor is human. He can make mistakes, but in my eyes, he is absolute genius. I know that may sound over the top but isn't that how we need to feel about our doctors. If not then we need to find a new one. I want to trust him with my life, with my future, knowing every decision is made just as if he is making them for his own daughters. It is a feeling of peace to have that. To know that he and many others are in my corner pulling for me. To see me live the best life I can. I don't know what is going to happen. These days I just take one at a time. I don't know if I am going to be faced with decisions that will send me to the brink of insanity and back again. I can't control everything, even if I would like to. But what I do know is CF may have my body, but it will never take my spirit. Not today, not tomorrow, not ever. My spirit is mine and it is precious. It may feel like I am walking through hell, but I refuse to not keep a smile on my face and my head held up. Even through the pain and sorrow of it all. It may be a tragedy to some, but for me it is beautiful. It is life. It is my life and I intend on living it.

My Chair

2010-07-30T10:00:00.000-07:00

Looking from the front it sets on the first row to the right. It may seem ordinary to you. I am for sure it goes unnoticed by others. However for me I am tied to it. It is symbolic. It is my healthy day, a burst of fresh air, a smile from a friend, tears for my savior, my chance to belong, my sanctuary. I think about it every day of the week. It never leaves my thoughts. It reminds me of a better tomorrow. It gives me hope for the future. It makes me feel strong when I am weak. From it I have seen and heard messages delivered from God. When it is empty I am sad and when it is full 'my cup runneth over'. I am blessed to have it. Blessed to use it. Blessed to experience it. From it 'mine eyes have seen the glory' and I have found 'amazing grace'. It is my refuge. My place to turn. It is where God speaks volumes to my heart. It is my something to look forward to. My soft place to land. It is my time for peace. It is my certainty in a world of uncertainties. My longing for understanding. It is my safe haven, a place to hide while being revealed. It is my chance to be well.

It is...........my chair.

*Written about my seat at church.

Moments

2010-05-04T12:44:00.000-07:00

Minutes turned into hours. Hours into days. Days into weeks. Each moment, each second I become more grateful that I am alive.

Urgent. There is such an urgency now. An urgency to breathe, to live, to laugh, to love. Catching my breath after minutes turned into hours. Hours into days. Days into weeks. Not being just another number, but rather a person. Having nurses and doctors who stepped up and beyond when things got tough. Having a doctor who reminds me of my faith when I can't find the air and the room is spinning. My heart coming through my chest suddenly slows to a pace of a great athlete. Imagine. Me, a great athlete. Wanting to run, to feel my legs stretch out in front of me. Walking with no fear of falling. Late night phone calls with my pastor intensely praying over my life. Crying out to God from a hospital room. Asking and then receiving. Laying in bed on a lazy Saturday afternoon with my daughter and holding her close. Smelling of her hair and hearing her sweet laugh. Knowing there is nothing more precious in life than that moment. Those moments. These moments. Moments I still have.

Throwing my self down before my King. Bowing at awe of His majesty. Knowing the mountain will move and watching Him stretch out His hand from the heavens to push it to the side. Scooping me up along the way to carry me when I can't walk. Breathing for me. In and out. In and out. The overwhelming feeling to know my savior. To feel His undeniable love surround me and His peace to fall over me. Oh sweet Father, I am so not worthy. Your blessings fall on me in blankets. Today I weep for the love you have shown me in these weeks. Weeks that were days. Days that were hours. Hours that started as minutes. Thank you God. Thank you God. Thank you God.

A Good Day to Cry

2010-04-28T21:25:00.000-07:00

Today was not a good day. Today was one of those days in the hospital when you just want to cry all day....so I did. I am not sure why I have been so sad today. I know I am on a tremendous amount of medication right now, one antibiotic included nicknamed "Mississippi Mud". Yes it is as horrible as it sounds. It takes 2 hours to run in so I can tolerate it and is delivered every 8 hours. While it is running in I experience pain almost as if a poison is being shot straight through me. The pain feels as if it is inside my bones and there is literally no way to ease it. Those hours are spent slumped over in my bed while Sam rubs my back and legs. It is literally a challenge of the fittest. I just have to endure it and move forward. Then there are the steroids........oh steroids. I have such a love hate relationship with this drug. They can give me great energy when given in small doses and actually give me a fake sense of being well for a limited amount of time. However when they are given over a lengthy amount of time and in high doses they are a nasty little drug. Side effects include but are not limited to...mood swings, swelling of the face and stomach, feelings of being disoriented and also the lovely crazy spurs of randomness that fly through your mind and make you wonder if you are in fact truly losing it.

My O2 is holding up well which means everything is going like it should. The collapsed airway has repaired itself and I am surely on my way to being well. You would think I would have had a great day with everything looking up, but I didn't. A lot of things didn't go well today. I ended up being hooked up today for 12 hours straight and now I am hooked up once again. I know it doesn't seem like much, but imagine the times you have had a cold or the flu even and the doctors have given you a strong round of oral antibiotics to take for a few days. Now multiply that by 100 and imagine taking them all day around the clock. It is tiring on your body. Anytime someone is sick and they are fighting an infection it just simply wears you out. So today even though I have only walked twice in the past six days I have felt extremely fatigued, almost as if I have been mountain climbing.

Then there is the therapy. The lovely chest therapy. I have always enjoyed my therapy because it clears my lungs so well and makes me feel so much better. However take "Mississippi Mud" coursing through your already struggling body and add your husband pounding you in the chest on top of the infected areas in your lungs for 20-30 minutes while you lay flat, sit up and hang upside down(yes I said upside down!), and you get a really uncomfortable, annoying, endless painful experience. So today I let myself cry. I really wanted to the day they loaded me up in the ambulance. I remember feeling the knot in my throat and holding it back so my mom wouldn't see me upset. I wanted to be strong for everyone. Plus I wasn't really able to cry because I was already trying to catch my breath, getting upset would have only made it worse, so I tried to be the hero, the strong one. But today I didn't. Today I put my face in my hands and let myself be sad, hurt, confused, and tired. I have had so much happen to me in the past few days and I have not even began to place it all together in my mind. I understand what has happened to me happens to other CF patients all the time. That it may even be considered a normal CF routine. But it is not my normal. Not what I am use to. I have been terrified for the past six days laying here struggling not knowing what the uncertainty of my situation was.

Most of all I didn't want to show doubt in my faith. I felt like by letting myself cry and be upset it would show weakness like I didn't trust God has His hand in this. But it is really right the opposite. Because while I sat here in my hospital bed with my O2 strapped to my face and wept it was not only because I was sad, but also because I was overwhelmed that I was still here able to sit in my hospital bed with my O2 strapped to my face to do so. This whole experience has left me feeling so unimaginably different. I have so much to feel blessed for yet I still find myself with fears. Fear of this happening again, fear of it being worse the next time. It is truly a test how strong the human spirit really is. How much I can endure.

I am proud of my fight though. I have given this 150%. Never refusing medications or treatments. Even when my breathing was at its worst and laying upside down to do my chest therapy seemed impossible because I couldn't find the air, I still did it. I withstood it all. I have made a conscious effort to cough as hard as I can as often as I can. Stopping between poundings to lean up to cough up even the most minute secretions. Feeling my ribs rattle and shake like they were about to cave in on my lungs. Wondering if my lungs were going to cave in, and pushing that fear away and coughing anyway. With no choice I feel like I slipped off a cliff and have been holding on for dear life trying so desperately to pull myself back up. I know for sure God's hand was under me as I dangled waiting to catch me if I let go. My trust in Him and His position in this has never wavered. Never more in my life have I relied on my salvation as much as I have now. There has been an indescribable peace that has surrounded me that I know God has placed in this situation simply because of all the prayers that have been sent up.

So the plan as of now, is to take it one day at a time. I have no clue when I will be home, but I do know that I will be. I miss everyone, my daughter the most and cannot wait to get back to living. As for now I am going to continue to fight and I know that God has a plan, a PERFECT plan for me. This experience will be my training day for the feats I have ahead of me, and simply because all of this happened, I will be ready, waiting, to face this monster head on, and I will have victory and rise above it, in the name of Jesus this is what I believe!

Reasons

2010-04-26T14:29:00.000-07:00

So as many of you know, the past few days have been very eventful of me. I have went from healthy to sick what seems like over night. I've spent most of my time laying in bed contemplating on what got me where I am now. How did this happen?? I always take such good care of myself. How did I slip through the cracks like this? Just accepting that this is CF is not enough for me. I want to believe we do have some control over our bodies. But now I am left thinking I am not so sure. Not that I think trying my best to stay well has been useless, because it has been the true opposite. However I believe I am becoming more aware now of what this disease is. I think for the first time in 27 years I know what it it is like to have Cystic Fibrosis. Up until this point I have always been a text book case. I get sick, I come in the hospital and I get well and go home. Then I think of how I am complaining even now, and my heart goes out to all of those who suffer with this disease. To those who deal with this reality day in and day out. You guys are my heroes. I can say I feel honored to fight with each of you for this life and at the same time no where near worthy to even say I stand beside you.

Not finding the air.

Friday morning it felt as if someone was holding a pillow over my face. I sat in bed and concentrated taking deep breaths in and out but no matter what I did I could not pull myself out of it. Feeling the secretions creep down into my airways and slowly closing them off. A taste in my mouth I will never forget. My heart trying to come through my chest to find the oxygen it so desperately needed to function.

An ambulance.

Watching the road sway behind me as I am carried to a safe place. Seeing people in their cars weaving back and fourth as we ride, some talking on their phones, some eating, no one paying attention. None of them knew of me, my life, my daughter, my passion for my God, slipping away in the back of the ambulance with plastic blowing fake air into my body.

Relief.

Feeling the oxygen, my safety net. No where near the same as "real" air, but still enough to give my heaving chest a rest. To let my heart catch it's breath and for my winded body to slump down and breathe in each sweet whoosh of air. The cold air that blew in the back because my precious husband told the driver how much I depended on being cold. How I needed it. Riding in the back of an icebox I was. But it was overwhelming and ugly and absolutely breathtaking. Praying to God as we rushed down the interstate. Prayer so intense that as long as I live I will never experience more beauty than in that divine moment. When the world fell away, my body was suffering, and it was just me and my precious savior, and while the reality of what is and what was held my body down He reached in and lifted my spirit up. To find your faith when you think you have lost it............is simply a moment you will never forget.

The Arrival.

Sinking down into my hospital bed. Knowing that I was here and help was on the way. The weight of the world on my shoulders carefully rolling off and falling onto my chest. Still struggling, but with great hope. Hope that this too would pass.

Time.

Time to think. Time to pray. Time to love. Knowing triggers. Pollen, mildew and mold. Learning valuable lessons. Like how pressure washing the house was more than likely not my brightest idea. Or how mowing the grass may be one of the things in this life I have to give up for just simply life in return. Spending each waking moment talking with God, knowing that He has His hand on my life and the amazement that everyone around me can see it also.

Talking and Walking.

Never more will I take for granted simple steps I take in the day or a conversation that will be had. These two things I have missed the most. Missed the easiness of them. Two small things that we never realize how important they are to us until they seem so far away.

Antibiotics, Steroids, and More Antibiotics

Swollen. Feeling the medicines course through my system. Almost feels as if a poison has been unleashed in me.They make you feel as if you are curling up inside. They tangle themselves in your system and almost as a cancer, they eat away at every part of your being, killing not just the bad parts but the good parts as well. Yet it is okay. I am alive. I am breathing better each day. Talking longer, able to stand longer on my own. So I know they are working.

Passion.

God's will. God's glory. To live, to love, to be well. To get better. To be a good mother to Peyton. To be a good grandmother to my future grandchildren. To be a good wife. To be a good wife to Sam. To be a good wife to Sam and love him. He has been my rock. Rubbing my back, turning my fan on and off, feeding me, helping me bathe, and doing everything short of breathing for me. He is amazing and I am blessed.

I am here today, fighting and struggling like never before. I believe that God has me here in this position for a purpose. If nothing else I will know how strong the human spirit truly is. How I can endure and push forward even in times of uncertainty. I know God will not abandon me. He knew this was going to happen. I trust in His plan and I will follow Him where ever He tells me I should go, even if I am walking clinging onto the air and grasping at this life. For God is my hope and without hope I am nothing.

Love. Love. Love.

2010-03-27T13:23:00.000-07:00

I follow a lot of blogs, however one is very special to me. It is Eva's story. I am in love with Eva's story, because it is my story as well. Eva also has Cystic Fibrosis like me. She had a lung transplant after reaching the end stages of the disease. Her story was followed by cameras and a short documentary was made showing her journey as a CF patient on the transplant list. The movie has yet to be shown in the United States but is surely making its way to debut here soon.

After struggling for quite some time with chronic rejection of her new lungs, Eva passed away this morning at 9:30 a.m. She was by far one of the most inspiring people I have ever seen. Even though I did not know her, I felt extremely close to her. CF seems to draw a bond between each of its victims that is clearly unexplainable. Eva's story was one of courage, daring to dream and simply knowing to love. I highly recommend you check out her blog here-----> 65 Red Roses

Eva made great strides in bringing awareness to the CF community. Her life will be beyond missed in this world. I wish we had more people like her. People that knew what it was to make life their passion and to simply do nothing more than love.

Love. Love. Love.

Resurrection Cookies

2010-03-25T16:21:00.000-07:00

I follow a blog called Fern Creek Cottage and she posted this today and it is really too great not to share! I am also including the picture she used, since we have not made them yet! Read through the entire recipe! We will be making these this year for sure!

Resurrection Cookies

To be made the evening before Easter with your kids

1 c. pecans

1 ts. vinegar

3 egg whites

pinch salt

1 c. sugar

ziplock bag

wooden spoon or rolling pin

tape

Bible

Preheat oven to 300 degrees (this is important-don't wait until you're half done with the recipe)

Place pecans in ziplock bag and let your children beat them with a wooden spoon or rolling pin to break the pecans into small pieces~Explain that after Jesus was arrested He was beaten by Roman soldiers.

Read John 19:1-3.

Let each child smell the vinegar. Put 1 ts. into a mixing bowl.~Explain that when Jesus was thirsty on the cross He was given vinegar to drink.

Read John 19:28-30.

Add egg whites to vinegar. The eggs represent life.~Explain that Jesus gave His life to give us life.

Read John 10:10-11.

Sprinkle a little salt into each child's hand. Let them taste it and brush the rest of it into the bowl.~Explain that this represents the salty tears shed by Jesus' followers and the bitterness of our own sin.

Read Luke 23:27.

So far, the ingredients are not very appetizing. Add 1 cup sugar.~Explain that the sweetest part of the story is that Jesus died because He loves us. He wants us to know that we belong to Him.

Read Psalms 34:8 and John 3:16.

Beat with a mixer on high speed for 12-15 minutes until stiff peaks are formed.~Explain the white color represents-in God's eyes-the purity of those whose sins have been cleansed by Jesus.

Read Isaiah 1:18.

Fold in the broken nuts. Drop by teaspoons onto a wax paper covered cookie sheet.~Explain that each mound represents the rocky tomb where Jesus' body was laid.

Read Matthew 27:57-60.

Put the cookie sheet in the oven and turn the oven OFF. Give each child a piece of tape to seal the oven door.~Explain that Jesus' tomb was sealed.

Read Matt. 27:65-66.

Go to bed! ~Explain that they may feel sad to leave the cookies in the oven overnight. Jesus' followers were in despair when the tomb was sealed.

Read John 16:20, 22.

On Easter morning, open the oven door and give everyone a cookie. notice the cracked surface and take a bite. The cookies are hollow!! On the first Easter, Jesus' followers were amazed to find the tomb open and empty.

Read Matt. 28:1-9

The hollow cookie! =)

Healthcare Reform: Hear the Voice of the Sick

2010-03-24T13:08:00.000-07:00

I have currently started following a blog written by a fellow "Cyster", Lauren Bombardier. She has recently posted a blog about the new healthcare reform, that caught my attention. I have been stirring for days trying to find the words to express how I feel about the new bill. While mulling it over, I came across her blog, and she said word for word just what I have been thinking. So with her permission I decided to repost her thoughts here on the current situation in America. The one thing I have been repeating over and over these past few days is this, for me as a Christian, I tend to look at the reform from a different angle. I understand everyone's concerns and fears about the new bill, but the one thing that sticks out to me the most and truly upsets me is hearing others say health care is to be "earned" and no one deserves a hand out. I, unfortunately, can not "earn" my health care. This is also leads me to think about Jesus and how He teaches us to live. So I am going to post MY view on this here::::::

Everyone we hear talking about this have been talking about how you have to "earn" health care, work hard for it and no one deserves a hand out. But wasn't that what Jesus was all about?? I don't claim to know everything about the Bible, however if my memory serves me correctly =) I do believe Jesus was in the hand out business himself. He didn't care what color you were, where you were at in life, or what bad things you had done. If we want to talk about who deserves what, NO ONE deserves the freedom we received through Christ when He died for us. But He did it anyway. I don't know if Jesus would be for or against this health reform but I do know He was all about hand outs and to people who LEAST deserved them. Makes me think of the scripture where he drug the woman out into the street and said, "He who is without sin, cast the first stone." He gave her a hand out and she was a whore.I thank GOD He sent a son to love me enough that He gave me a hand out, no matter who or what I really am.

With that being said I am going to post Lauren's thoughts on the matter here. I couldn't have said it better myself!!!! I encourage each of you to click on the link below and check out her blog as well. Thanks! =)

Blog:::: I have CF. So what?!

Written by: Lauren Bombardier

MORALITY
I had e-mailed one of my healthcare professors and asked him if he could speak about the new healthcare bill and what it meant for us and for elderly people (the topic of that class). I got into class and he thanked me for asking that question and began addressing the bill. However, he didn't address each part of the bill, he didn't address what it would change, but he addressed the ethics, the philosophy, the morals of what it means to have healthcare reform.

He made a couple of great points. He talked about how there are people who are pro-life, but don't support a bill that would require thousands of people to have health insurance to save their lives. He informed us that the U.S.A. is ranked 30th in the world for infant mortality rates (some websites say 47). This alarming statistic is proof that we are not a perfect country as far as health care goes. He stressed that it is human nature that we don't like change. When we think something works, we don't want to change it. But the problem is.... it doesn't work as well as we think. [If you have the time, watch this documentary SICK AROUND THE WORLD on how other healthcare systems work, some better than the US.]

My professor quoted Kennedy who wrote to Obama before he died "What is the character of our nation?" It is important that when we think about the politics of healthcare reform we realize that it shouldn't be about hidden agendas, or political victories, or money. It should be about saving lives, providing the best care we can give. Unfortunately, that isn't what this debate has come down to. And that's sad.

It's sad that people can call the president of our nation a baby-killer, point fingers, and spread false rumors while there are thousands dying because they can't afford their health care bills; while there are thousands without homes because they can't afford their health care bills. Understandably, there are probably a lot of things going on behind the scenes that deserve accusation. But I think Americans and politicians have forgotten about the true nature of healthcare. It saves lives. It saves lives in a nation founded upon the declaration of "Life, liberty, and the pursuit of happiness"

As much as some people may "hate" Obama, he was right when he spoke about CHANGE. And people are so afraid of change that they won't hear of it. People need to think more carefully about the need for change when they begin to shut down every aspect of reform without even hearing what it will change, how it will affect them, how it can make America better than it is. Politicians need to put down their own agendas and look into the eyes of those families struggling with healthcare bills and tell them they are going to ease their pain. Maybe this health care bill isn't everything it should be, maybe it has problems, but it is a step in the right direction. With all of its political turmoil, it is a call for change, something we should not be afraid of.

One Day.....

2010-03-19T12:38:00.000-07:00

I will.

Follow Me on "Echoes of an Artist"

2010-03-12T11:12:00.001-08:00

Click the link below to my new blog designed around the new adventure in my life! Be sure to follow it to stay included in all the new pieces that come out!! =)

Echos of an Artist

2010-03-10T16:35:00.000-08:00

It is finally time to reveal my TOP SECRET project!! This has been in the making for a few months now. I was really ready to expand my artist palate so to speak. So I am now unveiling my newest creations "ECHOS OF AN ARTIST".

"Alice in Wonderland" collection by Echos of an Artist

I am making jewelry. I have never been interested in jewelry until I started to think outside of the box and realized that canvas and paint are not my only mediums. From time to time I move to my sewing room and work on a project or two. Sometimes I knit a scarf or funky hat. I am constantly looking for a new outlet and way to express myself. I believe that this is a feat for any artist out there. We find new inspiration and need new ways of expression.
"Drink Me", by Echos of an Artist

"The White Rabbit" by Echos of an Artist

"Mad Hatter" by Echos of an Artist

When starting on this venture, like any artist, I wanted it to be an extension of who I am. I didn't want to simply string beads on a string. I wanted to make pieces of art for others to wear and enjoy. I also didn't want to dive in too deep too soon. So I thought it was best to start simple and go from there. I hope to make each piece unique and original. I want it to be something I love so dearly that I am almost sad to part with it.

I have several pieces coming up that you are simply NOT GOING TO WANT TO MISS! Pieces that I literally do not know at this point how I am going to give them up!! These pieces however are the first of many. These are done on black recycled scrabble tiles. The bails they are set on are sterling silver. I wanted to start with something I love and vintage came to mind! I absolutely adore anything old. Old things seem to have stories behind them. I don't really look at it as "old", however "touched". They just have more character and a way to make me smile. So I chose "Alice in Wonderland" for my first collection. Who does not love the story of Alice?? It is a timeless childhood favorite. I steered clear of the Disney remake however and stuck to the true original Lewis Carrol. These images are absolutely beautiful and stunning. Even as an adult they warm my heart and bring back so many fond memories of my youth.
"Alice in Wonderland" collection by Echos of an Artist

The price is $10.00 each.

This collection will only be offered now. I do not plan on doing any reproductions of this collection to keep them one of a kind. However I do have more "Alice in Wonderland" images I may add to the collection at a later date.

I have many more pieces to come, not all on scrabble tiles. However to find out on what, you will just have to wait! I don't want to spoil the surprise!

I also want to tell everyone that I have had a CUSTOM design made just for my CF walk coming up! The design is so vintage and simply put, ME! I told my designer exactly what I wanted and she delivered much more than that! I am currently in the process of making these with the special custom graphic made just for the walk. These will be priced at $10.00 each. $5.00 will be donated to Cystic Fibrosis Foundation to help find a cure for CF. While the other $5.00 will be put back into making even more of these treasures!! (I will post pictures VERY SOON!)

I am so excited to get the chance to pour so much of myself into something for others to enjoy. The collections coming soon will be similar to this. However some will have extra details and even a few will be hand painted! VERY excited about that!

I will be making a special blog soon also devoted to this. I hope each of you follow it as well. I want to thank everyone who has taken the time to stop by and check this out! I love each and every one of you!!!

Peace, Love and All That Hippie Jive

~Echos of an Artist~

*Photography done by Dominique Springer

Steroids Ramble

2010-02-26T09:06:00.000-08:00

Doctors have always been a huge part of my life. Even before my CF was diagnosed I dealt with them pretty regularly because of my cleft lip/cleft palate. The truth is however, I have always despised them and until recently only had one that I ever trusted, my pediatrician. She inspired me in so many ways. You have to understand that I was under her health care until the age of 21, when I was then transferred to the Adult CF clinic. I remember the absolute horror I felt to this day when learning I would have to leave my childhood days at one hospital and trade it for a big scary adult hospital.

Speaking of I hate hospitals too. They smell funny and they are full of sick people. Wouldn't you know I have never considered myself one of "those" sick people. Not sure why. I just have always kept my identity separate from my disease. No matter how many hundreds of times I drag myself into this place, it never feels normal. It always feel foreign. Honestly I woke up in the middle of the night a few nights ago to go to the restroom. The walk from my bed to the bathroom is a short one, like two steps. I walk into the bathroom and catch a glance of myself in the mirror. My hair was a mess, tied in knots all around my face and my eyes half shut from slumber. My heart jumped a little and suddenly I was wide awake. I looked around me and realized for the first time in my life, "I AM IN A HOSPITAL". It was like uncovering an ugly hidden truth. I know what you are thinking. First of all I must be crazy, which I don't claim to be completely on my rocker all the time, but at least I am wise enough to know that I'm not. Second, am I serious? After 26 years of hospital trips, being sick, going to the doctor and medicines I just now figured out I am in a hospital and I am sick. It hit me in a way I suppose news would hit someone who was newly diagnosed with cancer. I climbed back into my HOSPITAL bed in my HOSPITAL room and turned this new thought over and over in my mind. How much have I been in denial? How bad do I truly want to ignore what is happening to my body?? The truth has been there for 26 years, but it has been hidden by a lot of I feel greats, my cough isn't like theirs, and who cares what my numbers are I am breathing deep! It wasn't a sad discovery, just more like a shock. This wasn't depressing news but rather encouraging news. Yes I do everything I can to keep myself in great health. I am not perfect but I do like to think I go above and beyond of what is asked of me from my doctors. However I don't feel like the REAL reason behind what I was doing registered with me until now. I feel as if I have been taking care of myself to make the doctors and everyone else around me happy. After all it feels great when you get a pat on the back from your CF team for hitting the gym so hard, or eating great. So now I have new motivation. My lungs are sick. There I said it. It is true. They are. So from now on when I am hustling it at the gym, it will be for that very reason!!

***I would like to put in a note here stating that I am currently on steroids for my lungs. Anyone who has ever been on steroids knows your mind races away with you and right now it is hard for me to catch up. So please just hang in with this blog post. I know the writing skill is borderline lame and not sure there will be much of a point at the end other than I have managed to record some thoughts from this visit while my mind is stretched between insanity and pure genius. If this was a rough draft to an essay paper, there would be arrows pointing to parts of my story to insert new information. But since it isn't, it really in all actuality is a big jumbled mess. You know the commercial "this is your brain on drugs", well this is my brain on steroids. So bear with me.***

Now going back to what I said earlier about doctors. I trust doctors I see. Does that make sense? Does any of this really? Okay I am going to keep going with it anyway. I have a team of doctors here that take care of me. They are usually on rotation and I can count on seeing a different one each admission. Sometimes I get lucky and get to see Dr. Y, who is my favorite although we don't always agree. I respect him for his knowledge and effort. =) I also trust him to make the best decisions for me and my body. However sometimes, I see a totally random doctor that I have never laid eyes on. This usually is a first indicator that my stay is not going to be pleasant. First for all of my friends who work in the medical field or are trying to become doctors themselves, let me give you some patient to health care worker advice. I don't care what news you are delivering to your patient, bad or good, NEVER go into their room like you are entering a funeral! There is nothing more discouraging than the person who you are counting on to pull you through to have a completely negative and grim view on EVERYTHING! Now I understand sometimes news is bad. You can't just go skipping and singing into a patient's room with a big smile on your face and say "You are not going to make it." That would not go over well. I think it is finding a good medium on how to treat your patients. You have to remember that the mental well being of your patient makes up over half of how they are going to over all feel after the conversation is over. Words are powerful. They can lift a person up and they can also tear them down. So be careful with the way you explain things. NEWS FLASH! I know I am sick, I feel my lungs wearing out, I understand when I am well and when I am not. So there is no need in making a situation worse than it already is. I guess where I am going with this is I hate new doctors, whom I have never seen. It concerns me how much they truly care about my being well, or if I am just simply another number to them. They don't realize I am a mother and have a life that I totally adore. I truly feel if you become a doctor to make money, you are in the wrong business. If you see your patients as another statistic you just need to all out find another job.

This admission has went really smooth for me. I know it may seem like I am venting however this is really a deeply embedded fear that I have inside of me. I feel as a doctor, when you lose a patient, you should feel as if you lost part of your own family. I have heard it said so many times that it isn't healthy for a doctor to develop that kind of relationship with their patient. That they need to not be emotionally attached. Yet think about it, if you were living with a terminal illness, wouldn't you want the one person in charge of overseeing your health to care about you as if you were there own child?? Being a doctor is not an easy job. That is why I totally give credit to the ones who do it and do it well.

This started out titled as "White Coat Syndrome"...haha however STEROIDS RAMBLE is much more suiting I do believe. The run on sentences are making my head spin. Not to mention the lack of stretching my vocabulary beyond the words "and" and "but". I think I have written enough now. If anyone manages to get anything out of this word mangle then I will be happy.

The Face of Jill

2010-02-19T19:47:00.000-08:00

I know so many of you have already reached out to Jill through prayer. I can never thank you enough. As of right now, Jill is still in the ICU. I am asking for everyone to continue to pray for her. I thought since so many of you do not know her that it is important to give her a face. For you to know that she is a real person, with a real life. Here are a few of my favorite pictures of her.

This is my best friend Jill........

....she is a fighter......

....she loves poetry and Bob Dylan......

....she is a mother......

....she gives every inch of her life to her children......

....she loves the smell of incense and wildflowers......

....she is a free spirit......

....she is a dreamer......

....she is a wife......

....she is a sister......

....she is every bit of a flip flop wearin', peace sign throwin', tree huggin' hippie.

This is Jill........

....she is a best friend.

My life is better just because she is in it. Please continue to keep her in your prayers. Also tell her story to others and ask them to pray for her also.

Mark 11:22-24 (New International Version)

²²"Have^a]">[a] faith in God," Jesus answered. ²³"I tell you the truth, if anyone says to this mountain, 'Go, throw yourself into the sea,' and does not doubt in his heart but believes that what he says will happen, it will be done for him. ²⁴Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours. ^b]">

Praying for Jill

2010-02-14T19:42:00.000-08:00

I have really been struggling this past week. I started a Life Group at my church and we are studying a book called Victory Over Darkness. I never realized how tested I would be. This book is incredibly difficult for me. It challenges me to look at areas of my life and my past that honestly I would much rather just forget even existed. Sam and I both are doing the class together. Our hopes are to come out on the other side stronger Christians and most of all with a deeper intimate relationship with God. So far the spiritual warfare has begun and the attacks have been hitting my life like crazy. However I am clinging to this study with everything I have. I decided when I started it I would not back down and quit, NO MATTER WHAT!!

The start of this study could not have come at a worse time. My best friend Jill is in the hospital with pneumonia. This blog is really about her, not my Life Group. Jill and I went into the hospital together for the first time when we were about 7 or 8 years old. We became friends instantly and pretty much have clung together ever since. We both got pregnant around the same time also. Jill went on to have another child, a little girl, but I decided against having anymore. Jill and I have lived different lifestyles yet still remained so much alike. Almost all of the things we like mirror each other. We do have different opinions about things but still despite those differences remain closer than ever. We talk on the phone nearly every single day, sometimes for just a few minutes, and sometimes for hours at a time. We share all of our secrets, dreams and even the stresses every day life can bring. We rejoice with one another when life is going great, and we cry with one another when life isn't going so great. She has been a rock for me. I have lots of friends and people whom I can lean on however it is different when you are sick. You never fully feel as if your friends completely understand where you are coming from. Sharing the same disease Jill and I have a bond. Jill is really the only CF that I have made friends with and kept a friendship with over time. Back in the 1990's when the doctors made the discovery that we were sharing bugs and infections, I became extremely distant from my other CF friends and began to isolate myself from them on routine hospital stays. I always always always wear a mask over my face when I leave my hospital room and it has never been something I rebelled against, like so many other fellow CFers have. However my friendship with Jill really withstood the test of my anxiety and we remained close. We went from having sleep overs in each others hospital rooms (yes we did that haha) to talking on the phone and computer. Sometimes when I would feel gutsy we would venture out in the hospital together, but I still always wore my mask no matter what. Jill is this incredible ball of energy. She is such a free spirit. We both have walked a fine line of being a modern mom and a tree hugging hippie. She loves wearing flip flops, sunshine, playing in the rain, making art, Bob Dylan and just simply living. We were both born after our time. I could so see us at Woodstock, just living and loving. Jill is a mother to two beautiful children, Ethan and Rylin. They are in complete, her life. She lives for them. Everything she does revolves around their lives and she wouldn't have it any other way.

Right now Jill is sick and I am really at a loss for words. This past week I have been sickened with worry. Jill is currently in the ICU at UAB hospital. I am asking for each and every person who reads this to please pray for her. I don't care what you believe, what religion you are, or where in life you are at. I don't even know if you believe in God and I really don't care. About five years ago I was lost. I was so far off track of who and what God was. The amazing part is God did not nor does not NEED me to believe in Him to exist. He is there. So I don't care what you believe, if you know me and you care about me, close your eyes and just ask God to watch over Jill, to heal her, to bring peace to her.

A few days ago I really felt like I was going to lose it at any moment. I finally broke down when I went to Starbucks and after three tries they still didn't get my coffee right. I slammed my cup into the trashcan after one sip and ran out. That is so not like my character to do something like that. When I got into the car I put my face in my hands and started crying. Sam kept saying he was so sorry my coffee wasn't right and we could go to a different Starbucks up the road and try again. But the truth was out. The coffee was not the true issue, it was my best friend was laying in a hospital fighting for her life and I had no control over it. I can't help her, I can't talk to her, I can't even be there to hold her hand. I had had enough. A single cup of coffee finally broke me. I felt like I would never stop crying. I was so angry....so sad...so tired. So I came home and wrote my previous blog. I felt like if I didn't get it out then it was going to consume me. It was literally smothering me. I had to tell how I was feeling.

It didn't make Jill better, but it did give me some peace. I remember now that God is bigger than me, bigger than this disease, and even bigger than the monster Jill is fighting. It is His story, not ours.

I feel as if in writing this my words are not flowing. They seem so jumbled. But to be honest THIS IS REAL! It is messy, it is horrible and it hurts.

I am going to leave you guys with Jill's quote on her FB page. It soothes my soul every time I read it. It is almost as if Jill is speaking to me. It is just what she would say in a situation like this. She would be so optimistic and full of hope.

It simply says......"Even the sun has to fall to rise again in the morning."

I Pray

2010-02-13T14:11:00.000-08:00

I feel so numb. Life is so different than the sweet lost time of yesterday. The air around me is stale and I do not like being the host to this new emotion. Shock has taken residence here and sadness is slowly trying to move it. I feel the earth shift underneath me and I feel like I am falling into a rabbit hole. Yet this is much more darker and grim than anything Walt Disney could have ever dreamed up. I stop and watch everyone move around me in slow motion. For the first time in my life I look down and realize I am clinging to this life with blue fingers. You lay in a hospital bed, in a room, in a place I cannot touch you. Your mind is sleeping and your body is fighting. I want to be a good friend. I want to come to you. I want to fix you, but I cannot. For the thing that is holding you hostage can too attack me. Helplessness overwhelms me. I pray for you. I pray until I feel like the very being of who I am is going to collide into some sort of spiritual coma. I look to the sun and with tear filled eyes pray that you too will soon feel the warmth of life some day soon. Our lives so different yet the same, almost as if we are the same person living the same life two different ways. You have been with me from the beginning. Two little girls twirling circles in our nightgowns, holding hands, running and laughing, and shielding one another from life's twisted details. Knowing the monster in our closets no where neared compared to the monster lurking in our chests. Wearing flowers in our hair and loving God, life and grace. Refusing to fit in and marching to the beat of our drums that we played often and loudly hoping and dreaming that the world would hear. That they too would know of the life and love we so desperately clung too. I am better for knowing you. I am stronger, happier and healthier. I have nothing to offer you my ill kissed friend. I am no better to you now than the homeless who live on the street and beg. My eyes are open and I feel as if this life is a cruel illusion. God is here hanging onto my soul with compassion. I feel His embrace and I steadily let it consume me. I pray for sweet peace. I pray. I pray. I pray.

Making the Video: Part One

2010-02-04T17:45:00.000-08:00

So I am offically home from Tennessee. It was a very emotional experience for me. For those of you who don't know I am currently shooting a video with a company called Wadel and Associates. The video is going to be a short documentary telling my story. My story is simple yet complex. To be honest I really didn't realize how raw this would be for me. I am the sort of person who wants everyone around me to think I have it all together, all the time. When actually I really don't. Just like everyone else I have good days and bad days. I am learning more every day about myself. This whole experience so far has definitely got me doing some soul searching. I have never had to deal with my disease like this before. It has never been in my face so much to the point I can't ignore it. To be honest, this has and is going to be a very uncomfortable for me. Not only am I answering questions about my biggest fears I am also letting a camera into my home to film me at my most vulnerable, while strapped down to a vest, shaking and coughing, and just the parts of my disease that until now have remained private. It is time to be real though and I believe God is going to provide healing for my spirit through this.

Tuesday we did the interview. It was so real, so raw, and so unbelievably emotional for me. I left the studio feeling cut open for the world to see. Wednesday we did some shots of me in downtown Chattanooga. That part was really easy, other than the standing still for 10 to 15 minutes so the shot could be got. I will be making several more trips to Chattanooga before this is over. Most of my life over the next month will be caught on camera. I suppose I thought this would be easy since I am a writer. I never realized how much I actually hide behind my words though. How often I don't really say how I feel, but rather how I think others want me to feel or want me to be. They need me to be strong, almost like I am a super hero....but I'm not. I am just a girl who wants to live a normal life. My hope is that, what does come across in this video is God is all over my life! I do want to bring awareness to my disease and help raise money however, I would much rather someone watch the video and give their fight to God rather than go to the website and make a donation. I am intensely praying over this project and I really feel as if God has a hand in it. He is going to use my story, and that makes me happy. =)

As for Wadel and Associates, I simply cannot say enough about these guys. They are close friends of ours and without them this would not be possible for me at all. I really believe God brings people together for a reason. He knew they could help me, and they are. They are so professional and compassionate. I don't think they realize what a healing process this is going to be for me. To finally rip off the band aid and treat the infection from the inside out. They are amazing, and my life is blessed ten times over just for having them in it. They normally shoot commercials so this is a change of pace for them as well. This project has been a dream of mine for a long time. I can remember being a little girl and doing "pretend" interviews with my cousins, some of which I still have on tape somewhere. I am sure they would be good for a laugh now! =)

Everyone keeps asking me once the project is done, what then. What will happen to the video, who will see it, what is the purpose. My answer is I really don't know yet. All I can say is God whispered this deep into my chest along time ago and it has been gnawing at me ever since. I have actually had sleepless nights over this for years. It was something I have put off simply because I was not ready to face my reality. I am nervous, I am excited and I am scared to death. The time has finally come for me to let go and follow. God is leading, so as far as what happens next, I have no idea. I am leaving it completely up to Him. But I do know for me, He has a plan and a purpose. So this is me, a child of a King, completely raw and torn open. God is my hope and all I can do now is that....simply hope. =)

A Memory

2010-01-27T18:15:00.001-08:00

Life for me has been different. Growing up with Cystic Fibrosis was a constant battle for me. I had to find my place in life, where I fit in. It was a struggle that I dealt with for years. I wrote this blog tonight because I began to reflect on my childhood memories. I have wonderful memories. I had two loving parents, a wonderful home, and an amazing family. However there were things about my life that were different from my friends. I took a breathing machine for sleep overs, I missed school a lot due to frequent hospital visits and I was sick. I thought back to what made my life different, the same and even what made it better. This is one of those memories that made it different. I tried to reach back in time and really grasp what my mornings were like as a child. The sounds, tastes, and feelings. What it felt like for me, a child with Cystic Fibrosis. So this is what I came up with. This is from an actual memory that I have. I picked the age ten, because I am not really sure when this actual memory was. I do know that this was pretty much my morning routine every day so it would be really hard to narrow it down on a time line. I believe sometimes as we grow older, we forget the way things are seen through the eyes of a child. So I took a moment and stepped back into time, to remember. =)

The sun hasn't risen just yet. The bush against my window scrapes the glass as it always does. I roll over as my bedroom door eases open and the light from the hallway quickly descends into my room eating away at my slumber and telling me a new day has arrived. I hear my mother call quietly, "Summer, it is time to get up." I know what is next. I hate what is next, actually I despise it. I am ten years old at the time and all I want to do is sleep a little longer. Yet I know what is coming is the inevitable and I might as well not fight it. I lean up and let out a deep cough, the kind that has been sitting in my chest all night. My sides tear open and my whole body slumps down into a giant mass of bones and skin. I am still tired, oh so tired. My father walks into my room, being careful not to disturb me. He clicks on the lamp on the side table next to my bed. He folds the towel and then lays it across my chest. He cups his hand and positions it over my lungs. Then it begins. He starts to pound into my chest over and over. The dull thud vibrates all over my body. I ache, I ache to sleep, I ache to breathe, I ache to live, yet I do not want to do what is required of me. I began to pull away giving him little room to adjust his hand. He pulls me back and repositions again asking me to be still. Somewhere in the background my mother comes in with a fresh clean nebulizer with my morning cocktail of albuterol. The beating grows harder and louder. My father's hands are like rough leather and they pore down onto me as if he is trying to rip the disease from my body himself. The taste of honey and lemon lingers on my lips from the night before. The night of coughing, tossing, and turning, coughing up bits of blood that I will find dried up on my pillow in the morning. Yes, one of those nights. The noise in the room is silent, the sound of my hollow chest and the hum of my nebulizer feel up the air. I hear my sister who has awakened and is steadily getting ready for school, while no one takes the time to help her. Too much effort and attention is being spent in my bedroom to keep a sick child alive. My parents work steadily together, almost as a machine. You can hear their gears grinding. My mothers voice sounds weary and full of slumber still. My father barely speaks at all. The room is filled with a silent scream, trying to keep a sick child alive. My breathing is slow and steady as I am buried beneath my blankets. I am comfortable. I feel safe. I know the monster in my closet no where near compares to the one living inside of my chest, eating away at me, little by little. I flip carefully onto my side when my father instructs me to do so. Our situation has brought us to be comfortably numb. This is our life. This is our normal. I notice my sister walks by my room several times. She has her make up on and her hair placed in just the right way. She is so beautiful, like a princess. I want to be like her, I want to be a princess too. I clutch my stuffed rabbit as he pounds me harder. My sides, sore from the night before, are showing themselves to be absolutely wicked now. The aching will not seem to give me any relief. After another ten minutes, my father pulls the towel from my chest and tells me we are finished. As he leaves the room I set up in bed and a cough rumbles out of my chest like a mighty beast waiting to pounce on it's prey. A deep breath follows and it burns yet feels cool and comforting at the same time. My mother comes in and turns off my nebulizer. I swing my legs over the edge of the bed and start my favorite part of my day. Where I am finished with Cystic Fibrosis, at least for a little while and I can be normal like the rest of my friends. I quickly get dressed, scarf down an egg sandwich and grab my backpack. I know tomorrow morning this routine will start all over again, but for now, this moment, I am ten years old and I want to be a princess one day, just like my sister and that is all that matters.

An Introduction of Sorts.....

2010-01-25T19:21:00.000-08:00

***First I want to really take a moment to spotlight something that I believe is going to be a huge movement in the CF community and sweep through like none other. A pretty awesome guy, a fellow Fibro =), Ronnie Sharpe and his fiance, Mandi, have started a new website just for CF patients and their family and friends. The website is called Cystic Life and has by far impressed me. The site is set up much like that of Facebook and is a FANTASTIC way of communicating with others who are living the same way. We are all warriors on this giant battlefield called life. It is an honor to be fighting next to people like this!!! So if you haven't already please take a moment to go check out the website. I will provide the link below. It is very easy to navigate. I truly believe that these are the things that are leading us to the cure!!! Cysticlife.org, where we can come together, unite and start our REVOLUTION!!! =) Thank you so much Ronnie and Mandi! =)***
Click on the logo to go to Cysticlife.org!!!

I wrote my first blog on Cysticlife.org tonight and thought I would share it here as well. I will not be doing this with all of my blogs however since it was a first and it marked the beginning of something new in my life I wanted to share it with those of you who are devoted to this blog. Thank you so much for reading, each and every one of you!! Including my Facebook friends. =)

Writing is now and always a huge passion in my life, as well as art in general. I never intend to "blog" or write about my disease, but it always somehow bleeds through my words. It is a part of who I am yet not who I am. I am a mother, a child, a sister, a daughter.....to evolve deeper, I am a writer, an artist, a lover, a fighter for my life and keeper of my home. I live to love and love to live. Life for me is bittersweet. I am the girl that writes all of her great ideas on the back of Starbucks napkins. I lose all of my life altering writings in the canned food aisle at the grocery store, but you can't win them all. They always seem to come to me when I can't get to pencil and paper. I spend a lot of my time trying to stay well. I only have one body so I have to be really good to it, amazing at that. Despite all the horror, sleepless nights, and traumatic turns Cystic Fibrosis has brought to my life, I have to say it has been a blessing. Without it I would not be me, and I would not know of a God who is bigger than me and bigger than this disease. Without it I would not know a love for my daughter that expands into another dimension, another time even. To desire to watch her grow into the woman God created her to be. To celebrate with her highest achievements and to pick her up when she fails, because she will fail, and she will be stronger because of it. Without it I would miss moments. Moments that pass by others like the wind blows. Watching a bird drink the morning dew on the grass out on my lawn. Hearing the beautiful etched silence first thing in the morning while the world sleeps. Without it I wouldn't know my husband. I wouldn't know what it is like to reach for him in the night and wanting to hold him forever. Forever. I would not know the depth of the meaning of the word forever. How it seems so beautiful when it is always an arm stretch away. No, none of this I would know. For me, my disease is vulnerable, fragile, ugly, yet precious. Being sick.....being well....being somewhere in between. It feels as if before the world ever stood, before we were ever blown from dust, when time hung empty in a black hole, even then I was a thought, I was an idea waiting to happen, and it was then God bent down and whispered a wonderful secret into my ear, that others will have to live a lifetime to learn. Yes it was then I was given Cystic Fibrosis. =)

I Will

2010-01-09T20:59:00.000-08:00

Today marks one week, seven days exactly, since Sam and I bought our gym membership. I upped my reps and my weight today. It was so exciting for me. I must say I have officially survived Round 1 of Cough Fest 2010, but isn't that what all of this is about anyway!! Coughing, moving junk inside of my chest, feeling my ribs rattle and shake as I pump the weight. It feels absolutely incredible!!! I have been out of the gym for going on four years. In those four years my life has changed incredibly. I have had ups and downs. I met Sam and started a new life as his wife. My health also took a plunge and my FEV1 fell from the lower 50's to the low 30's. What happened?? What made the sudden change? A year ago I went to the doctor and pulled my numbers up about 20%. That year I also was only hospitalized twice. That was a good year. Then my numbers fell again. The doctors were pleased when they pulled up because it showed I didn't have permanent damage to my lungs, not yet. I can remember in my early 20's blowing in the high 80's like it was nothing. Now I feel like it takes a miracle for me to just keep my numbers stable. So I had to make a decision, a choice. Life was going to happen whether I liked it or not. I could either sit around and let this disease have my body, or I could do what I always said I would and go out kicking and screaming. And I must say I am learning to love to kick and scream. =) This girl is not going down without a fight!!!
The gym has picked me up in so many ways. It is my favorite part of my day. I will admit that it is hard watching everyone doing cardio. Cardio is not such a great friend of mine. My heart rate gets extremely high with very little cardio so I have to pace myself which I don't like at all. Here is a little secret of mine, I am a runner at heart. I know it sounds so crazy to even think of the idea. I am sure my family would laugh if they knew my passion to run. But it has always been there. I was never into sports growing up, but I always loved to run. I can remember racing my boy cousins and winning more times than not. I was quick on my feet and I loved the way it felt. It was freedom for me. If I would have had half the drive I do now when I was well, when I was teenager, I would have joined track. Of course the drive I have is the type of drive that usually only comes with age. It did me anyway. So it is hard when I can only walk ten minutes on the treadmill because my heart rate will fly sky high and those around me are RUNNING. I want to run. I want to feel myself skip, run, hop without losing my breath. I want to get up in the morning while the rest of the world is still sleeping and listen as my feet hit the pavement, keeping rhythm, while the sun comes up against my back. I want this. I want this more than anything. I want to be healthy. I want to live. I want to enter marathons and races and finish, not finish first, not even second but just simply finish. It is a desire that is embedded deeply into who I am. God tells me I should, I need to, I want to. He says it is part of my story.
So today marked a week at the gym. I did not run. I did do more reps with more weight. But no I did not run. But...I will. It may not be tomorrow. It may not be next month. But I will run. Not only will I run but I will get up in the morning while the rest of the world is still sleeping and listen as my feet hit the pavement, keeping rhythm, while the sun comes up against my back.

The New Year =)

2010-01-06T14:27:00.000-08:00

Okay first.....I am neglecting my blog. I realize that. However when the choice is to neglect my blog, or neglect my life, sorry, but the blog is going to lose every time. I have big plans for my writing and hopefully one day will find more time to put more energy into it. As of right now being busy in life is just fine with me. I always say I would rather be busy than not. That is always true, I would rather have a life to live than not.

So updates.......

Sam has been home a lot=ME VERY HAPPY! =) Sam is on salary pay so it is really a good thing, since he has only been working about two days a week. He has been studying for his exam in February. He is trying to get registered in NCV. So please be praying for him. For those of you who do not know what Sam does, he works in Neurology. He is a Neurodiagnostics Tech. Basically he tests people for nerve damage. He is working on his VNG registry now and is pretty much registered, just waiting on the certificate to come in the mail. Those of you who know Sam, know how huge of an accomplishment all of this is. We will definitely be framing his registry certificates. =)

Christmas came and Christmas went. We had a really great Christmas, as usual. I am still in the process of pulling decorations down. Finally got the tree down last night, so we are in the home stretch now. Sam and I joined a gym, how cliche' of us, right?? Well this was different. Even though we joined during the new year(which the purpose was to get a better rate), this is NOT a new year resolution in any way. Before I met Sam I was a member of a gym and worked out no less than three days a week. I ate organic ONLY (no exceptions!) and took extremely great care of my body. Sam did the same minus the organic. Since Sam was a cheerleader he was very obsessed with body building and weight lifting. However when we fell in love, I guess you could say, we ditched the whole health thing. Not sure why. I do remember the first time Sam brought frozen pizzas over to my apartment and stuck them in my freezer though. I thought I was going to have a panic attack!! =) Sam is currently cutting weight and doing a great job at it. I, however, am not cutting weight. Due to my small size anyway, and the problems I have with my health, trying to lose weight would not be in my best interest. So I am lifting weights like a mad woman. We switch, legs and arms, every other day. It has been incredible thus far. Our first day to the gym was like slipping into an old skin for me. I love everything about the gym, the people, the atmosphere, and the energy. We have been spending about two hours a day there. We decided we would go EVERY day for four weeks and then start skipping one day on the weekend.

My motivation. My motivation is about 4 1/2 feet high, blond, green eyes and is in the third grade. That is the reason I work out. I work out to live. It isn't because the media tells me I should look a certain way but just simply because I think waking up in the morning would be pretty cool and I want to make sure I do it. =) I know I push myself sometimes beyond my limit. When I feel like I am reaching my limit but want to go further, I just simply make a new limit for myself. Sam is truly the heart of my health. There is no better way to describe him. He knows when I am out of breath before I do. He coaches me, pushing me to do more sets when I am tired, walking my my machine adding weight to what I am already lifting, only to help make me stronger. It is almost as if I feel that I am preparing for a battle. My body has to be in the best shape it can be, so when I get sick, I am able to fight off infection that much easier. Three things that truly make me love Sam more than anything else.
1. He loves Peyton like she is his.
2. He worships with me, not only on Sunday, but on Monday, Tuesday, Wednesday, Thursday, Friday AND Saturday.
3. He pushes me when I want to quit.

I will try to post updates on the gym as well as my lung function when I can. As of right now I have not been in the hospital since AUGUST!! YAY GOD!!! How amazing is He!?!?

In other news, I have a piece of art that may just be the best piece I have ever done that is UNFINISHED. It is pretty much all I think about. We moved Pey's room over the holidays and eliminated the play room since she no longer has any use for it. We now have an art room or studio, whichever you would like to call it. My painting is in there calling my name. I have never poured myself into one piece so much. I wouldn't really call it a painting....it is more just a piece of art. I will post pictures as soon as it is finished and you will know what I am talking about. The only way I can describe the experience is this......I am 26 years old, I have been painting since I was 12, constantly switching styles, from abstract, to still life, to different mediums, I have done just about everything and it just now feels like I finally found myself in my art. I found a technique that works for me. Something that people will be able to look at my pieces and say that is a Summer Welch piece. So I am very excited about it. I have thought about furthering my education and going to college for art. After all my plans had always been to go to an art school in New York, well until, my "motivation" came along. Haha Which I would NEVER change for the world. I know the New York thing is out of the question now, but it still appeals to me to learn techniques. That is really where my craft lacks. I have the ability but not the tools, if that makes sense. Maybe this year will bring new things to my door. Who knows. Maybe I will go back to school. If for nothing else but for the sake of learning. Oh how I do love to learn.

Okay that is all for now folks. If you have read this far then thank you. I am still currently working on my book for those of you who are wondering. It has turned into a God thing for me. I am now on His time line, not mine. When He wants me to write He gives me the words. So it isn't anything I can rush. I will try to post some excerpts from it soon.

I love you all and hope 2010 proves to be an astounding year for each of you!!

Peace, Love and all of that hippie jive. =)

My Miracle

2009-12-22T10:50:00.000-08:00

Nine years ago today God reached down into my life and the chain of events that happened changed the person I was and would forever be. Peyton came into my world. I could never find the words to express how I feel for her. She is by far my miracle. It still amazes me when I stop and think that I actually grew something that incredible inside of me! Today I celebrate nine wonderful amazing years having her by my side. I never knew love until I became a mother. She is my reason for being. My reason for living, for pursuing life head on with every bit of passion I have down inside of me. She is the reason I get up on the days I feel like staying down, the reason I push myself that extra mile when I am in the hospital and feel like there is no way out. She is my hope, my love, and my inspiration. She makes life fun, interesting and that much sweeter. God looked down upon my life nine years ago and saw that I needed a reason to live. She is it. She is the reason I fight. She is incredible in so many ways. She......is my purpose. =)

Happy Holidays!

2009-12-17T15:44:00.000-08:00

Life has been coming at us fast. We spent Thanksgiving in Tennessee which is always amazing. I feel blessed that I have in laws that I am absolutely crazy about. Sam's family is an extension of him. I love each and every one of them. Now Christmas is right around the corner and we are coming into a new year. WOW! Where does the time go? My little one will be turning nine next week. It is not easy for me. We moved her room last week into her playroom and cleaned out all of her toys, and things she doesn't play with anymore. She now wants Bath and Body Works and cds and big girl things. Ahhhhh........It was a bit emotional for me going through some of her things as I packed them for storage. I ran across her bear that hung on the door at the hospital the day she was born and the past nine years just came flooding back to me. She is growing so fast and is every bit of amazing that I could have ever dreamed of. She is beautiful, smart and funny. When I count my blessings I count her a hundred times over, for I was surely blessed when God chose me to be her mother.

With the new year brings new things our way. We are planning on painting several rooms as soon as the first of the year passes. My health is proving to hold out very well this holiday season! THANK YOU GOD! It is always nice to breathe easy during the holidays. We were blessed by some of Sam's family over Thanksgiving with a treadmill!!!! It has been incredible! I have been walking every day and coughing tons afterwards. I have noticed my endurance has been building. Today when we left Peyton's Christmas party at her school I was able to walk down the street to where Sam had parked the car, instead of him having to go get it and picking me up. It was really nice. The cooler air really helps. It is amazing to feel amazing. THANK YOU GOD! I am sure I still have suffering in my future, struggles and hurdles, yet today was a good day and I take it a day at a time. So THANK YOU GOD!

I have been so inspired these past few weeks. Art has been pouring out of me left and right. I have been finishing projects that were once put off and starting new ones all the same. It has felt really good. I decided to get crafty the other night around 10 pm. HAHA I made our Christmas cards. I was very pleased with them. I have been looking in the stores and found nothing that matched our personalities. We waited too late to order the traditional picture cards that we usually get. So I had the notecards here from a previous project and decided to do them. It took about two hours to make 36 cards. I, of course, think they turned out fabulous. I hand painted abstract Christmas trees on the front of each one, red on half of them and green on the other half. Then just wrote a simple Merry Christmas on the inside. I am considering doing this every year from now on, coming up with a different design each year. I want them to be abstract, modern and simple. The possibilities are endless, I could do gifts, ornaments, Santa, or even elves. I do believe I will start this project earlier in the year however so when Christmas arrives it will be one less thing on my list to do.The front of my Christmas cards. I took the picture of them both together to show the green and red. =)
The inside.

Sam opened his Christmas gift from me. He couldn't wait. It was a Dremel tool. Yeah doesn't sound very exciting. But it is. He can now carve funky designs into wood. He is really excited as so am I. Sam is an artist is his own way. His dad paints but painting bores Sam. He loves power tools though. I can't wait to see what he makes. He is asking for a pottery wheel for his birthday so I am going to be doing research on that one between now and April.

This is all of the Welch household news for now. I hope everyone has a safe and fun holiday!! Love you all!!

Oh yeah World Peace and all of that Hippie Jive. =)

"Sam I Am Is I Was Me"

2009-10-25T09:07:00.000-07:00

On this day one year ago, I was up running around, making sure every last detail was perfect. I was by far, a complete mess. My stomach had "butterflies", my heart sat in my throat like a huge lump and emotional wouldn't even begin to describe the state I was in. I was about to join with Sam as one person. Sam was and still is my best friend. So I thought what better way to celebrate today than to write about him.

I met Sam almost four years ago through a mutual friend. He was this incredible little ball of energy. He was facing many demons at the time, yet he had this enormous heart. He was so friendly and just a blessing to be around. People were naturally attracted to him. When he walked in the room, everyone was drawn to his electric personality. At that time I never imagined I was looking at the man God had created just for me.

Sam and I started Epic together literally when they first opened the doors. After being there for maybe a month, Sam was asked to join the Tech team. He absolutely loved it. Before Epic, Sam had never been exposed to church. Me, on the other hand, had been in and out of church my entire life. Everything was so new to him. It was amazing watching him grow spiritually. Sam is and has been completely sold out to the Epic vision since day one. Sam is a volunteer on the Dream Team at Epic. He has been showing up every Sunday for the past two years and every single time stays for all three services, sometimes working them by himself. Even when I go in the hospital, he will stay with me on Saturday night and then wake up around 5 am on Sunday and drive home just to make it to service. He has a drive that is unbelievable. Sometimes I have no clue how he does it. It by far is a passion for him. Sam was baptized for the first time in his life ever this year at Epic. It was such an emotional experience for me. I believe each of us has a story. Sams is truly one that will blow you away. To know where he came from, the path he was on, and where he stands today is a true testament to God's mercy and love.

He supports me and he loves me. He goes to work for us each week so he can provide everything we need. He goes above and beyond at work, doing extras for the doctors and his coworkers. Most of the time things that go unnoticed, but he continues doing them anyway. He gives God all the glory and takes none for himself, which to me blows my mind daily.

We have such a unique marriage because I am sick. Sam stepped into my life, knowing the hardships that were to come and loves me completely and fully each day anyway. On the days I can't get out of bed, he helps me. He never once complains. When I feel like crying and screaming because I can't quit coughing, he holds me as tight as he can. There are days it feels like he literally breathes for me. He gets out of bed on his only days off and takes Peyton to school so I don't have to. He hired a housekeeper so I wouldn't be stressed and feel inadequate from not being able to handle all of the housework. When I go to the hospital, he stays every single night possible with me, holding my hand and pushing me along the way to get better. He has been there with me when I am coughing up blood and not sure what the future is going to bring for me. He completely supports me with the book I am writing. He is so patient never hurrying me to finish it, knowing I will finish it in my own time. There have been several times when I have been sick and because of the physical limited activity I could do he carried me on his back when he noticed I was taking short breaths. He loves my daughter as if she were his own. He has told me time and time again, he truly believes God created her with him in mind, even though he wasn't in the picture at the time. He is a man of God. It isn't something he tells you, it is just something that radiates off of him.

It is an honor to get to walk beside him in this life. I truly believe that God created us for each other. That our story together was planned long before we ever imagine. He is me and I am him. His victories are my victories and his defeats are my defeats. He is everything I dreamed of as a little girl and more. I love his drive to be productive and adore his heart that wants to help those in need. He never meets a stranger. He always has a smile. He is truly my best friend. I am overwhelmed today as I look back at our journey thus far, for I have been blessed beyond my wildest dreams. =)

Pumpkins and Life

2009-10-12T21:35:00.001-07:00

It is that time of year once again. The air is cooler and everything that was once green is now beginning to turn beautiful tones of reds, yellows and oranges. This is by far Sam's favorite time of the year. We have all of the Halloween decorations up and ready. I must say, we have more Halloween decorations than any other family I know. This year we pulled 3 giant plastic tubs and four big boxes out of storage, as well as Sam's favorite, his black Christmas tree with a skull base. Yes Halloween is near. We usually celebrate this time of year with several trips to haunted houses. The rain has held us up quite a bit however we plan on venturing out this weekend, rain or not. The rain has put a damper on our holiday cheer. I know I talk of Halloween like it is Christmas. You must understand to my husband, it is exactly like that, if not better. He absolutely adores Halloween. We definitely take it a step further than the typical family. I must say, it does feel somewhat like I am a member of the Addams family at times. It is all in good fun though.

I do wish the rain would stop. I have just about made the decision to build an ark. Our yard is a mess and I don't even know when we will be able to cut the grass again. At this rate, not anytime soon. Of course since the weather has been nasty, it is soccer season. Those usually fall together. Peyton is playing her second year. She loves it so much. I never realized she was going to be a little athlete. She is so good and is one of the fastest runners on her team. She scored the first goal of the first game of the season this year. She did the same thing last year. At her last game, I asked her to help carry our folding chairs. After she strapped one over her shoulder I realized how small she looked, so I offered to carry them both. She looked at me and said, "Mom, I can handle it, I am a soccer player, not a ballerina." Haha I love her so much.

The month of October leaves us many things to celebrate. Our one year anniversary is on October 25th. It is so exciting to know it is right around the corner!! I completely and totally adore Sam more now than I did on the day I married him. The two of us work so well together. We have built our marriage around the foundation of God's word and that helps so much. We both firmly believe that when we were married we were joined together as one flesh. We do have struggles from time to time however we work together daily as a team. It is more evident now than it has ever been that he is who I dreamed of as a little girl. Some days, I wake up and look at the life I am living and think to myself, how did I ever get so lucky? God truly saw fit to bless me immensely.

We are leaving November 1st for Severville, Tn. We are staying in the exact same cabin we stayed in last year for our honeymoon. We will be gone 7 days and six nights.Our cabin is located on the peak of a mountain with a breathtaking view. We are both like kids on Christmas morning...counting down the days. We CANNOT wait!!!! I will be sure to post up pictures.

We have been so blessed these past few months. God has by far been at work in our lives and we are so thankful. Life is good. =)

Kreativ Blog Award

2009-09-08T22:15:00.000-07:00

Miss Katey gave me this blog award. Katey and I share a common bond, as we both have Cystic Fibrosis. Katey is a transplant patient. Her story is a true inspiration and full of hope for those yet to take that step. I encourage each of you to go to her blog and read her incredible story.

Katey, thank you for being a beacon for God's light and allowing us to be a part of your journey. =)

Here are the rules for the award:

Thank the person who nominated you.
Copy and paste the logo on your blog.
Link the nominator on your blog.
Name seven things about yourself.
Nominate seven "kreativ bloggers".
Post links to the nominated blogs.
Leave a comment on each of the blogs

Ok..so here are 7 things about me...
1. I have the most beautiful, incredible, amazing little girl. I am amazed that God found me worthy enough to be her mother. My pregnancy with her was hard. Doctors told me it could result badly. Yet she is here, perfect and healthy and will be celebrating nine wonderful years this year!

2. I attend Epic. It is more than just a building or a church to me. I truly believe Epic is making a movement in the city of Decatur. I have a huge passion to stay with Epic and see it through until the end. It was through their love and acceptance that I came to know the true spirit of Jesus.

3. I am married to the most amazing man ever. He loves life and loves God. It is a blessing to walk this life with him. I never knew what the true bond of marriage was until we were married. I truly feel as if we are bonded, flesh and spirit as one, just as God intended for man and woman to be.

4. My parents are my backbone. My Daddy has been everything a little girl dreams her Daddy to be. He set the standard high for any man that come into my life. He taught me to love wholeheartedly and to keep pushing forward. My Mother taught me to have my own opinions and to always stand for something. She instilled values of self worth , confidence, and self respect deep into the very spirit of who I am.

5. I have Cystic Fibrosis, however it does not define who I am.

6. I have a purpose, a will and a way. God has revealed to me that I am here to glorify His name. He is the Alpha and Omega. He shows me daily that there is no dark corner that he cannot see into. When life gets big, He proves to be bigger.

7. If I were to be completely honest, I would say for the very first time in my life I am living in a beautiful disaster and I am truly, deep down, from the bottom of my heart, inside my soul happy and it feels wonderful.

I nominate the following 7 "kreative" bloggers:
Candace @ The Fuller Family
Heather @ Shake It
Carole Foret @ Artful Living with Carole Foret
Frank @ Quid est Verita
Ronnie @ Run Sickboy Run
Jamie @ A Bumb's Life
Singleton Hippie Art @ Just Give Me Peace

Pictures of the Progression

2009-08-06T06:26:00.001-07:00

I have decided to post all of the progression pictures from the painting here so you can view them side by side. I am also going to be posting pictures at the bottom of me working on the painting!! I have a great new art project coming up and it is TOP SECRET!!! I will give you a few hints as to what it might be! It is going to be a huge project and Sam is going to have to help. It will be in my home when it is completed!!! I am so very excited about this!! I can't wait to reveal it!! Once I get "elbow deep" into it I will post pictures!!! Until then, you can only guess!!! =) =)

Hope you guys are having a wonderful week!
I love you all!!

First Sunday

Second Sunday (This was the day the artists didn't touch the painting, the red paint was put there by IV during the message.)

Third Sunday after 1st service (This was when Melody had started her top half, I had yet to start on my bottom half)

Third Sunday (This was what Melody and I had both done after all three services on the third Sunday)

Fourth Sunday---The finished painting.

These are close ups of my half of the canvas.

Here are some pictures of me working on the canvas on the fourth Sunday.

Glory

2009-08-02T13:26:00.000-07:00

The finished painting.

We finished up our "Canvas" series last week at Epic. I must start out by saying WOW! This series really moved something deep inside of me. Last week we talked about God's Glory. This meant so much to me. Most people live thinking about what if. What if I got sick? What if I lost my house? What if, what if, what if. However I...I live in the what if. I am sick. I have a genetic lung disease. To make it even crazier I just learned recently what my genotype was. A genotype is the type of gene I have that actually created Cystic Fibrosis in my body. My genotype is rare. To even get deeper into my genotype.....I learned that there is ONE mutation in my genotype that causes my Cystic Fibrosis. Most people have hundreds of mutations.....therefore causing it harder to find a cure for those types of genes. However mine only has one. This was exciting news, yet at the same time, it really made me reflect. There is one tiny little mutation that kept me from being normal....from being well.....from being like everyone else. Yet God saw fit for that one mutation to exist. This news was very bittersweet to me, as I am sure you can tell. So close to have having a life completely free of disease. That was not God's plan though. That was not what was painted into my canvas. Instead I have red paint in the middle of my canvas. Sometimes it makes me stand out among others, sometimes it makes life a little different from those around me, but all in all it is mine, my canvas, my life, and it is precious to me. Several years ago I learned to start giving God glory...and not just when things were going well. It makes me think of the song by Casting Crowns, "I Will Praise You in this Storm". That sums up my life. When I can no longer breathe on my own, when I no longer can depend on my body to carry me any further, that is when I will stretch my hands to the sky and praise God like I never have. My suffering brings me closer to God. It is through my disease that I have come to have a relationship with God like no other relationship I have with anyone else in my life. It is through this I have come to know a love so powerful that even time cannot touch it...for it is an eternity of love. My body is broken. It will let me down. That I am sure of. Each one of us will encounter death at some point. Our bodies are not meant to carry us all the way. However my body may be broken, my spirit is not. God gave me the spirit of a fighter. That is where His glory is.....in the fight. I have such a strong will to live, to move forward, it would take an army to stop me. God is always there, pushing me forward, moving my feet when I am tired, breathing air into my lungs when I can't, and holding my head up so I don't miss a single second of this incredible journey. It sounds so amusing to think of it. I stand 5'1 and on a good day weigh 120 pounds and I have the face of a child. Yet I truly consider myself a warrior. Life is not bad. I am actually very blessed, and seem to find myself sick less and less. Yet through health, sickness, and everything else I give God all the glory. If not for Him and His immense love for me and for all of us , I would not make it out of bed every morning, I would not be able to take care of Peyton, I would not even be able to set here three months out of the hospital typing this blog to you. He is the reason I breathe. I understand I don't always get to be well. I have to be sick sometimes. That is part of my canvas, my story, my life. Yet I trust His will and His way. Who knows me better than my Creator??? Who knows more about what I need and don't need?? I pray daily that He breaks me down and uses me so that I can serve Him. My life has to have holes in it for His light to shine through. Being sick is never easy for me. It is never something I will get use to. However knowing that even one person could see God and His true glory just by hearing my story or seeing my life makes every single second of it worth it. Every hospital stay, every blood draw at 2 am, every time I ever cough up blood...it is all worth it. He takes every negative in my life and turns it into something positive. How amazing is that?? I am not a preacher or a saint. I am just a woman with a divine love for my Creator. I am blessed that He opens my mind daily and feeds me more understanding each step of the way. It makes me have to stop and say through all the disease and suffering, life is truly beautiful.

I Am Not, But I Know I Am

2009-07-25T15:27:00.000-07:00

I promise to blog on this really soon. However I know so many of you are wanting to see the progress. So I am posting a picture now and will return to blog later on. My work is in the lower right hand corner under the slash through the middle. The top part is Melody. =) We decided to divide the canvas last Sunday and work on our own sections. It is really neat to see how it is coming along and ties in together!! This Sunday I will be painting ALL three services! So please pray for me!! I have to run now, but promise to blog later!!! Be sure to check back for the update! You don't want to miss this blog! The title says it all!! =)

***UPDATE***

In the book of Exodus, inside the story of Moses and the burning bush, for the first time in recorded history, God tells us His name. Moses asks when I come to the children of Israel and they ask what is Your name, what do I say to them?? God replies, "I AM WHO I AM". God tells Moses to say to the children of Israel, I AM has sent me to you. (Exodus 3:13-15)

This was our message for the third week of "Canvas",I am not, but I know I Am. It takes us out of the picture and puts God in the picture. God wanted us to know His name and it is I AM. Since His name is I Am, our name is I Am Not. Who is going to take care of us? I AM When life gets hard and we want to give in, who is going to stand beside us to make sure we pull through?? I AM Who is going to be a father to my child?? I AM Who is going to take care of me when I am sick?? I AM Who is going to make sure we are fed?? I AM Who is going to love me?? I AM The list just goes on and on. IV explained this beautifully. It was what has been my favorite message in all the history of Epic.

Now the artwork. It has been very intense for me as this message has progressed. I have had to take myself out of the canvas and put God in. It has not been easy. Being sick, the focus has always been on my health, my entire life. Everyone I love around me is constantly watching and waiting for me to conquer my health. So often I pray to God, please make me well, please heal me, I know you can do it, please. However that is not making it about Him. My disease, although it doesn't overpower me, it still exists. Something I have learned in the past few years is my purpose for being sick. I don't believe I am sick by luck of the draw. It isn't an accident. Everything in His plan is perfect. There are no defects. God makes no mistakes......not even the scar on my lip. =)

Messing Up God's Plan

2009-07-20T17:05:00.000-07:00

(*Note* I will be posting a blog soon with pictures of the progress from yesterday. I just really wanted to blog on this. God layed it on my heart. I hope you guys think about it for the next few days and it speaks to you in some way. Love you all!)

As most of you know from my previous post, I was out of town the second Sunday of Canvas. As I also posted earlier, the decision was made to leave the artwork freestanding, untouched for all three services. I finally was able to grab the message on CD that I missed that Sunday as well as see the canvas again. I was in for quiet a shock. As I turned the corner into Epic, I immediately noticed something horrible was wrong with the canvas. To my disbelief there had been red paint slung all in the middle of our beautiful art. The art was finally taking a direction and it was so exciting to see where it was going!! Yet there stood this giant piece of canvas I had been pouring my heart and soul into for the past two weeks, praying over, dreaming about, ruined. I was stunned, speechless. There were no words to express my emotions. I had a lump in my throat that felt the size of Texas. Someone in passing must have noticed me standing motionless in a gaze of fear and came to my side. They told me what had happened. They said I needed to listen to the message. The message. Hmmm....I had not heard it yet. I was suddenly so eager to hear what excitement I had missed. So I grabbed up one of the recordings and quickly ran to my jeep and played it in my CD player. It sounded so usual at first, IV coming on, welcoming everyone to Epic. Then he started speaking about God's masterpiece. The masterpiece He paints daily in our every day lives when we are so busy and unaware. I could hear him picking up the paint brush and then it happened. I heard the red paint slide onto the painting Melody and I had worked on. He told of how our sin and our plans for our lives ruins God's masterpiece. My heart was breaking. No longer was it because our artwork had a runny red glob in the middle, instead because I understood exactly what he was saying. Our artwork is no where near comparable to the masterpieces God paints every single day, however I knew just a teeny weensy bit, on a very smaller scale how God must feel everytime I say no to Him. The times He has already painted it in my life. It is already there, and I am busy trying to paint it in myself. What a mess I must look standing with all of that runny red paint on me in the middle of his beautiful artwork. I was touched. Something deep in my soul was awakened with this new understanding. I have always been one who loves everything life has to offer. The beauty and the chaos. I never take simple things for granted. Like the color of green the grass is after a hot summer Alabama rain. Or the way my daughter stares out the window while we are driving like she knows some big dark unkown secret. Or the way the sun shines on just the right spot of my yard at just the right time of day. Yet I now realize even though I take in every second of every moment that I am blessed with, how often do I find myself "telling" God how I think things should be. The perfect example.....Cystic Fibrosis. How many times a day do I say, you know, God I need you to do this, this is what needs to happen, I need to be well. Instead of trusting that God is the artist, and is painting something so unimaginable, so breathtaking that not I, nor you could ever even begin to wrap our minds around it. He knows the next brush stroke. He knows what I need and what I do not need. I think I need to be well, however He thinks I need to be sick. So this leads me to another idea, maybe the red paint, maybe it isn't always things that we do in our lives. Maybe sometimes it is misfortune, or illness that we stumble into with no fault of our own. But I ask you this....without the red paint, how beautiful would the world be?? If I was well, I cannot tell you where I would be today. I cannot tell you that I would notice the shades of the sky on a late afternoon, or the way the gravel crunches under my feet as I walk the trail between my dad's house and mine. I may not ever notice how beautiful it is to pull into Epic every Sunday morning, and see the most incredible people that I have ever met in my life. And to know they are all on my side, praying for me, and hoping and watching for my health to get better right along side of me. I may never notice the kindness of a smile. If I were well, things may swim past me so fast in a sudden blur. I would be left with the rest of society waiting to realize how beautiful and sudden this life is at an old age when I was wrinkled and tired. If that is how I see the red paint in my life, then I welcome it. Because even when there is red paint, there is also new beginnings. New beginnings for our lives. God can step in and paint over every last single stroke until all the red is gone. He can make it a masterpiece, His masterpiece. So I say to you today, no one is perfect. We as a human race will constantly struggle with messing up God's plan. We will always be red paint. Thank GOD we have a Savior who died for us, to make it right. Because I would HATE to know that I was actually in charge of what is going on around me. The one thing I have learned in my 26 years, sick or not, when I do things without God, all I end up with is a big red mess.

In Progress

2009-07-13T06:41:00.000-07:00

³⁰ Then Moses said to the Israelites, "See, the LORD has chosen Bezalel son of Uri, the son of Hur, of the tribe of Judah, ³¹ and he has filled him with the Spirit of God, with skill, ability and knowledge in all kinds of crafts- ³² to make artistic designs for work in gold, silver and bronze, ³³ to cut and set stones, to work in wood and to engage in all kinds of artistic craftsmanship. ³⁴ And he has given both him and Oholiab son of Ahisamach, of the tribe of Dan, the ability to teach others.

Exodus 35:30-34 (New International Version)

We went to Tennessee this weekend to visit Sam's family. It is always amazing to be able to see them. Our adventures were many and our laughter was much. However I will have to write of it another time. As of right now I am simply just posting a picture of the painting we are working on in "Canvas" I actually missed Epic yesterday because of our trip. The painting was left untouched, and just stood during service in the spotlight. I have yet to hear the message. So I am going to leave a picture I took earlier in the week of our work so far along with a passage from the Bible that I found. This is truly what I am praying for during this series. I want God to use me as a beacon for his light. The work I am doing on the painting is His, not mine.

Peace and Love

Canvas

2009-07-06T08:32:00.000-07:00

We started a new series "Canvas" at church Sunday. It will run for the next three weeks. During the series the church has purchased an 8x4 (Yeah it's huge!) piece of canvas and set it on an easel to the right of the stage. There it sits spotlighted for the entire service. During the Praise and Worship, which lasts about 20 minutes at the beginning of service we have an artist come out and paint on the canvas, very abstract. We have three services for a total of three artists. No one knows what the outcome will be, not even the artists themselves. They are letting the message and God drive them towards the end result each Sunday. What I have yet to say is, I am one of those artists. I paint during the second service at 11 am. Yesterday was the first day and it was fabulous! I have been intensely praying about this project ever since I was asked to come on board last week. This was a spur of the moment idea our Pastor had so the artists were chosen at last minute. I have been painting for 13 years. I have been an artist for as long as I can remember, and I have never had the experience that I had yesterday with my art. This is a lot of firsts for me. It is my first time to paint in front of a LIVE audience. I thought I would be so nervous. But actually I prayed for peace and did God ever give it to me!!! It was like the audience wasn't there at all. It was me and my Savior and the music! Everything else just seemed to fall away. I was in my element. It just felt really comfortable for me. It was my first time to paint with other artists. Although we are not painting at the same time, we are building off of each other's work, which was liberating for me. I was a nervous wreck about it. I was so afraid of painting over someone else's work. But that isn't what we are doing at all. We are building on something. Layers upon layers. After the first artist was finished yesterday morning, someone had already offered a lot of money for the piece, and it was just a base coat! How awesome is that!! The church is going to auction it off when we are finished. I think if it goes at a good price we should do several. We are wanting to build a new building for our church, since we are growing so fast. I think that would be an awesome way to raise money and contribute towards that goal. It was also my first time to paint to Wojo. Wojo is our Pastor's best friend from Vegas. Him and his family are visiting from Vegas. Wojo performed the opening song. It was so easy to paint to him!! I could not have asked for a better opening!! I feed off of music when I do my art, and man did he have something to feed off of! He opened with acoustic and I loved it!!!! Wojo is this great big man covered in tattoos with curly hair. Our Pastor met him at a church out in Vegas when they lived there for a short period of time. I met Wojo for the very first time Saturday night at our Pastor's house for our Youth 4th of July celebration. How to describe Wojo.....hmmmm. You know how you meet someone and they look like they could kill someone, just have enormous strength, but wouldn't hurt a fly?? Okay that is Wojo. Not to mention he has the coolest name ever. Like seriously...I am thinking future baby name here. Seriously. On meeting him, I instantly felt the kindness of his spirit. He is just so peaceful. We stood together behind the curtain waiting to go out for the service yesterday morning. I noticed you can just feel his spirit. He is a man of God. Very amazing. I heard so much positive feedback about his performance yesterday!! People were saying they wished he would move here and be our Praise and Worship Leader. It is so awesome to be able to paint LIVE for the first time ever while listening to him play for the FIRST time ever. LOVE IT LOVE IT LOVE IT! I have been praying over this series. I have prayed that God comes through me onto the canvas. The point is to realize God is the artist in our lives, painting an amazing masterpiece. I had been praying so hard for everyone in the audience to get something out of this. What I had not realized was what I was going to get out of it. God is doing amazing works in my life. He is the GRAND ARTIST and my life is the paint. How breathtaking is that?? Yesterday before I went out, as I stood behind the curtain with Wojo, I started coughing. Coughing a lot. Sometimes when I get anxious I cough. I know it sounds crazy but it is true. I just said this quick two second prayer in my head, God please, not now. Countdown was up, I come around the corner of the curtain and positioned myself in front of the canvas, a metaphor for our lives. I picked up a paint brush and grabbed my rag and began. Instantly the itching in my chest dissolved. God answered my prayer. What seemed like such a small prayer to so many, is such a big prayer for me. How often do I close my eyes, and say God, please, not now. But when the coughing stopped only seconds before I walked out, it was like God whispered deep into my chest, "Yes, Summer, now." Not now for coughing, not now for hospitals, not now for being sick, but instead now for painting, now for worship, now for serving, now for peace. I have learned with every stop in this life there is a go. A stop to be sick and a go to be well. I must say that I do believe that I am going to take away from this experience more than I ever imagined. God is the artist of my life. He is in control, and how awesome is that!!!!

Tennessee Again

2009-06-11T09:27:00.000-07:00

Right before we left to go the show!!

I am having a difficult time with this blog. I have been trying to use it as a daily journal of sorts, however I am a writer. I simply cannot write as if I am speaking. So therefore, from now on I have decided with a few exceptions of updates on our trips and whatnot s, I am going to be using this blog in the same way I have ever used any blog...as an outlet. So here is a bit about our trip we just took. Check back often for new writings of mine to be posted. =)

Me and Houston (Josh's Brother)

Lately we find ourselves in Tennessee a very good bit. Which is fine with me. In my opinion, there is nothing better than fresh mountain air. This trip was made because Sam played at the Coconut Bay again. For those of you who are not aware, my husband, Sam, is a DJ. He started played around nine years ago I believe. Of course this is not his job. He actually works in Neurology for a company called Drs4Drs. Being a DJ is just something he does in his spare time. The music he plays would be listed as Techno. While it is not my favorite music to listen to, he has won me over with several Bob Marley remixes. =)
Sam and Andy, one of his really long time friends. They cheered together at United.

We left on Monday unsure of where exactly we were going to stay for the night. We were torn between getting a hotel room and staying with Sam's friends. They too are also DJs. We decided on staying with a friend after all, Josh, to be exact. Monday night we went to the local Mellow Mushroom to hang out with several friends. I, myself, fell in love with the Hummus they serve there. Who would have ever known that a Greek favorite would have been so delicious in a pizza place!?!? It was FABULOUS!! I even ordered some to go!!!
Josh(Str8 A) The Grill Master himself!! =)

Tuesday was the day of the show, so as always, it proves to be a busy day for us. We ran several errands, which seemed to end up taking most of the day. We were all anticipating Tuesday night so it was fine to kill the time. Tuesday night we all met up at Josh's house and grilled out with a lot of friends, actually several new people to me. The food was incredible. I have to completely give credit to Josh for knowing how to "work the grill".
Chas(with his eyes closed!), Me, Houston, Holly and BJ

After dinner we all headed out to "the Bay" or Coconut Bay. The opening DJ was a woman named Gina. She played mostly hip hop. Sam's set was next. (His DJ name is Omni.) His entire set was Deadmau5. I was really glad he picked those. They sound great turned up loud. Then Josh(Str8 A) went on and finally Kyle (K House) played. At midnight when Kyle finished his set, they asked Sam to go back on, which was really really cool. Sam as "Omni"

Kyle as K House =)

The crowd loving it!!! (This wasn't even half of them!!)

I had a really great time. It was outside on the patio so that was better for me, since EVERYONE was smoking. I don't drink, with the exception of an occasional glass of red wine. So it is always interesting for me to be sober and watch everyone else around me not be. Sam drinks scotch, but not heavily. So it is always like we are in a twilight zone when we are around a large crowd that is completely wasted. Ha ha. But we do enjoy it. Close to the end of the night I realized there was more than drinking going on. There were several people there that were rolling. Which just blew me away!! Coconut Bay is a restaurant/bar type of place. I just never imagined seeing people on ecstasy there. It is really disheartening for us. The techno scene, because of the history of raves, has a really really negative reputation. A reputation that we hate. Everyone thinks because my husband listens to Techno then he MUST do acid and all of those other crazy things. While Sam did have a time of experimentation he is now a man of God. I really believe God is leading him slowly to do a ministry through his talent. It is such a huge chance for him to be able to tell his story with drug addiction and possibly help others in the scene as well. He actually signed with a manager a week ago!! Very exciting!! His manager is our Youth Pastor at our church. However you may not believe that when you see him. He is a giant man, no hair, covered in tattoos and has a "metal" beard. Ha ha. He is pretty awesome. He has been working in promotion for a really long time. I am really excited about him promoting Sam to regular venues and also Christian ones as well!!! This could be Sam's calling!! =)
Sam ha ha ha dancing of course!

Oh me, I do believe I have been rambling!! We ended up skipping the after party and staying with Kyle Tuesday night and returned home yesterday!!!

Tuesday night turned out to be a true success for the guys. The best part about it is, Kyle and Sam learned together years ago, and Josh followed in a few years later. They all three cheered together at some point and are truly best friends. This was their very first time to play out live together!! So it was really special! The crowd was loving it! I really believe it is because these guys have such great chemistry together and are friends off of the stage. It really makes a difference!! All three...Josh(Str8A), Kyle(K House) and Sam(Omni)

I am posting up some pictures and then I have to run! We are also heading into Tennessee again this weekend for Sam's family reunion!! I CANNOT wait!! I LOVE his family! I will post pictures when we get back from that as well! I hope everyone is well!! Remember to check back for original writings!!!
Me at the end of the night!! It was sooo incredibly hot!!!!!
Love you all!! =)

The Boro

2009-06-08T12:50:00.000-07:00

I love floating around the pool on a hot summer day. It makes me so happy.

We are packing and getting ready to leave this afternoon for Murfreesboro, Tennessee. That is where most of Sam's friends live. He is playing a show tomorrow night at the Coconut Bay. It should be fun. I usually sit at a table and sip on water all night, while everyone else drinks heavily and gets silly. Ha ha. They are all really great people though and we hate we do not get to see them more often!!This is an old picture of me...well a few years ago at least. But it seemed fitting for the rant I am about to give that I would like to insert mini title...."For the Love of Steroids" =)

On a health note...gah I HATE talking about being sick!! I am not sick right now! Yay! But...yeah there is always a but. I am tight in my chest and wheezing. I am having asthma symptoms. I told the resident last time I was in (and my Dr.) about all of this. They just increased my Advair. I really think I need a pack of steroids. I took steroids last summer for the first time in years!! It isn't something I like doing. So you know if I am ASKING to take them, then I really feel like I need them. It is just a pack and it only lasts for like five to six days. I felt so much better last summer when I took them. That may just be the fix I need again. So I am giving myself until Wednesday, and if nothing better, then I am going to call the clinic and have them call them in.

It is so funny how when you are sick you almost become good at it?!? Like I am a professional sick person. I am a lot of other things as well. And Cystic Fibrosis is just a small part of my life, but when I get sick, or start feeling bad, it is like I know what meds to prescribe myself. I have been doing this for so long and I know my body so well by this point that I know what works and what doesn't. It is really crazy.

How blessed am I??? Is she not breathtaking!!! Gah I love this kid!

Life is good though. Peyton is gone to the beach with my aunt and uncle. I miss her so much!!! She will be back on Thursday. Then on Friday we leave back out again for Tennessee!!! I love being out of town though. It is so fun to see other places...even if they aren't far. I use to want to travel the world and as I would love to still do so one day, I came to realize that there are places right here around me that I have yet to even see!!! So I want to see those before I move farther out on the map! =)

Epic yesterday was so amazing!! Our pastor told the story about Ester. I love hearing those stories. He has such a way to make them come to life for me. God's presence is by far in that place. I always leave feeling like a new person......and most importantly loved.

God is so amazing. To Him I give complete and total glory to the blessings that have been delivered upon me during my journey. It's like blowing an FEV1 of 27% but never needing oxygen and being able to run laps!!! Only in the hospital twice last year!! WOW!! God is clearly at work in my life. He is not finished with me yet!!! I have to thank Him for today and every day here after. On most days I truly feel like a walking miracle!!!! =)

I am going to post some pictures simply because I LOVE blog with pictures!!!

I hope everyone is well and happy!!
Love you all!! =)

Deadmau5

2009-04-07T07:53:00.000-07:00

We had a wonderful trip to Tennessee last week. We went down on Tuesday for Sam's set at the Coconut Bay. The crowd really turned out and we had a blast. Wednesday night we hit a club in Nashville for the Deadmau5 show. It was very interesting to say the least. Deadmau5 is a DJ that wears a giant mouse head as he spins. He had two different heads with him Wednesday night. Very neat. On Thursday we rode into Chattanooga to stay with Sam's parents. We always enjoy seeing them and never really feel as if we get to stay long enough. We woke up on Friday to celebrate Sam's 26th birthday and drove home!! It was a great trip but as always, there is no place like home!

Hope all is well with everyone!

Trips and Floors

2009-03-12T08:27:00.000-07:00

We took a family trip to Tennessee this past weekend to visit Sam's parents. We do love those trips. We had a chance to visit with his grandmother, Mary, which is always a real treat to me. I am not sure if it is the longing that I have for my grandmother still who has passed away, but something about Mary just fascinates me. I catch myself wanting to hear every thing she has to say. Driving back from Soddy Daisy, where she lives, to Sam's parents home in Chattanooga I literally sat on the edge of my seat taking in every wonderful story she was telling. I love her little quirks and opinions about everything.
Saturday we did a small early birthday celebration for me and Sam's father. Peyton became very ill and had to go to bed. Her fever spiked to about 102.7. I was so worried. She stayed home from school until today. She is now feeling a lot better, mostly just coughing some.

Sam had to go out of town this week. He left on Tuesday and will not be returning until Friday. I do miss him so. We had decided to lay new hardwood floor in the bedroom so he pulled up the carpet before he left. Now I am left in a bit of a mess and sleeping in the guest bed has not proven to be satisfactory with my back. I am hoping...no I am praying that the man comes today to finish the floor. During these past few days I have realized how much of a sanctuary my bedroom has been to me. I must not take it for granted after this!

I hope all is well with everyone. I will try to post a new update soon on the GREAT STRIDES walk!!

=)

Starbucks Philosophy

2009-02-24T18:18:00.000-08:00

***I actually wrote this from the hospital on Feb. 11, 2009. I am home now and doing well. Hope you all enjoy.***

After having much time to ponder on all the greatness of life and wonders of our nation, I have decided that they can all be summed up with one word...Starbucks.
We are such an insanely Starbucks driven society. The logo, smell, and taste has almost become a staple for us in our every day busy lives. I for one highly contribute to this madness. During my stay at UAB, I make many stops into the Starbucks located here in the hospital to retrieve what I like to call my "comfort in a cup". It wasn't until yesterday the whole Starbucks metephor came to mind. As I stopped in for my usual cup of wonder, I noticed right away something so familiar and so unbelievably overwhelming as soon as I walked through the door. The warm smell that filled my nose and in an instant I was carried back home. The thoughts of holiday shopping, running daily errands and weekly worship flooded my mind at once. I walked over to the counter and began to place my order, "tall caramel mocha, with both caramel and mocha drizzle". As I stood and waited for my greatness to reach me, more thoughts began to flood my mind. I began to watch those around me and took in their little coffee house experience as well. You could see them coming, nurses, doctors, patients, and visitors, running towards the door, they too brought their hurried stride down to a calmer more focused walk as soon as they come under the frame of the doors. It was almost as if a spell so heavily sedated in magic had overcome them instantly. It seemed our surroundings were hypnotizing us all. The jazz music coming from up above, the lights setting an amber glow across the shop, and then of course the wonderful amazing smell of warm coffee. Each detail taking us back to a wonderful memory, bringing us back time and time again to...... Starbucks. Those wonderful memories we wanted so desperately to cling to. Truly that is how life is. It is almost as if we never completely have new experiences, for every "new" experience is bathed in past experiences. It is how we judge situations and learn what we enjoy and come to know what we truly love the most. It is amazing the knowledge you discover when you just sit still and take in every single thing around you. When you allow yourself to become a live wire and just let life move
through you. To think of all the undiscovered philosophical ideas that still await us and can be found in such a place as Starbucks.
As I let these new findings sink in today I thank God for giving me the ability to go through this life with my eyes wide open. I wouldn't want to miss one detail of this beautiful disaster we are living in.

Fridays

2009-02-13T10:41:00.000-08:00

I am going to be able to go home next week!!! =) =) =)
I am so excited!! Tomorrow, Jason is bringing Peyton to see me!! I can not believe I am going to get to see her!! It has been ten days today since I saw her last. I can not wait to hold her. I absolutely adore that little girl.
I am doing great. My numbers are up and I am feeling back to normal. I am doing the full 14 day stay just so I get cleaned out really well and don't have to worry about coming back anytime soon. Afterall I only came in twice last year and I would really hate to break my record!! =)

My mother came by yesterday and brought her friend Gina. It is always so nice to see someone from home. Sam is going to be stopping by this afternoon on his way through. I miss him and Peyton more every day.
In the end this is all worth it. If I have to take a few weeks every now and then to make sure I have more time with the people I love it is worth every second!!!

=)

Birmingham

2009-02-04T14:46:00.000-08:00

I am currently in the hospital at UAB. Things are going good so far. It has only been one day and I already feel better. I came in extremely dehydrated and had to be given fluids over night. Today I have felt much better and I believe it has a lot to do with the fact that I am now hydrated!! =) Being away from Peyton is never easy. She gets tossed around a bit while I am away, however it is the way things have to be. I really hope I am able to come home in time to spend Valentine's Day with her. Valentine's Day has never been one of my favorite holidays, yet when you have children you learn to look forward to every holiday. It is so much fun for them. We bought Peyton's Valentine cards for her class before I left so she would have them. I may have made the mistake by not helping her to fill them out. I hope she remembers all the children in her class! I may have to call some family to help her with it!
Today has been really good. I have spent most of the day reading a new book I purchased, written by Bill Hunt. It is called "The Last Witness From a Dirt Road". So far it has proven to be an incredible read. It has by far accomplished lifting me from this hospital room and setting me down right into the sugar plantations of Louisiana in 1946. Any book that can give me an escape from this place is a good book to me!!!
I took a short nap after lunch and then walked down to Starbucks. My addiction to that place is so unsettling.
I have seen many doctors today. All with fairly good reports. Other than the whole usual spill of the usual. Day two and I am already longing for home. Hopefully this trip will be a short one!!!

Dental Appointments and Beltline Driving

2009-01-29T14:43:00.000-08:00

I was a bit too excited about going to the dentist today. Sam now has dental insurance coverage for us and it is a true blessing!! However on my way my brakes locked up at a redlight on the Beltline and I slid into this huge truck. The damage was very minimal to the truck however my poor jeep is going to need special attention. All is well I suppose. No one was hurt in any way. I rescheduled my dentist appointment and hopefully can make it to the next one a bit safer!!
The Great Strides is going great still. I have had even more donations!! Very excited about that. Sam has left for a work trip and will not be returning until tomorrow so I am going to spend as much time as I can with my artwork.
It has been one of those days!!! =)

Sunshine and Fresh Air

2009-01-27T12:11:00.000-08:00

So far Great Strides 2009 is going fabulous!! I have tons of people who are going to walk and so far we have raised $300!! I know it doesn't sound like a lot but considering I just launched this campaign six days ago I think it is amazing!! People have been so interested in helping and the response has just been overwhelming!! In other news, Sam was baptized yesterday!! How amazing is that?? With last weeks inauguration, Sam's baptism and then the launch of my team I believe it was the BEST WEEK EVER!!!
The weather is so wonderful today!! I have all the windows raised to let in the wonderful fresh air that I have been missing so incredibly much!!! Today is one of those days that if I died right now, honestly I would die the happiest person in the world!! GOD IS SO GOOD!!! =)

Summer's Exodus

2009-01-23T15:12:00.000-08:00

For those of you who know me, know that I am fighting a battle everyday and sometimes my life feels like a war zone. For those of you who don't know me, now you will know. I have Cystic Fibrosis. Cystic Fibrosis (CF) is a genetic lung disease that affects the lungs and the digestive system. I was one of the rare people that only had the disease affect my lungs. Every day my life is filled with breathing treatments, physical therapy and literally what sometimes feels like an uphill fight. I am hospitalized several times a year to fight off infections in my lungs. There is no cure. One day I will have to have a lung transplant. I like to consider myself very normal and I try to do as much as I can on my own. I do not like asking others for help.
I am extremely active and I have a beautiful healthy eight year old daughter that is a complete blessing from God. However in an instant, just from catching something as simple as the flu my life could turn upside down. I am leading a TEAM in a walk to cure Cystic Fibrosis in Huntsville, May 2nd, at 9am. The walk is GREAT STRIDES.
My team is called Summer's Exodus. The choosing for my team name was so difficult for me. As a writer I pride myself in making my words dance however this was a true struggle for me. I wanted a name with some Biblical strength behind it. After considering many names, none of which I am going to mention here to save myself from the embarrassment, Summer's Exodus took me. The definition of the word Exodus is as follows:
1. a journey by a large group to escape from a hostile environment
2. the second book of the Old Testament: tells of the departure of the Israelites out of slavery in Egypt led by Moses; God gave them the Ten Commandments and the rest of Mosaic law on Mount Sinai during the Exodus
It is so perfect because that is exactly what we are going to do!!! We are going to walk out of the depths of this disease into a brighter tomorrow!!!!
I live an almost normal life and I consider myself to be one of the lucky ones. God has blessed me already in ways that are unmeasurable. In ways I am sure that I am not worthy of.
Today I come to you. I am reaching out through this virtual world of static, past a survey, or myspace graphic into something much deeper. Life. This is my life....and I need your help.
You can click on the link below to go to my website and learn more about what the GREAT STRIDES walk. You can also make donations and join my team. You too can walk along side of me on May 2nd. The walk to me is a protest. A protest that I will demand nothing but the best. That I will not let an evil rob me of what is mine. That I will stand and be a miracle in God's work and I will be here as His tool, to only glorify His Great Divine.
I take these myspace surveys all the time. A question that comes up quite often on them is "What is your greatest fear?" My greatest fear is so horrible that I can never bring myself to type the words. It stays lodge in my throat, and runs down into the pit of my stomach. It aches at every part of my being. I have never shared that fear until now.

That fear is leaving my daughter. That fear is her standing on stage to receiver her diploma and her mother not be there. That fear is those college years so sweet yet confusing and her mother not being a phone call away. That fear is the happiest day of her life arriving and her mother is not there to help pick out the cake, the dress, the flowers. That fear is those sweet grandchildren of mine that need nothing more than to be spoiled rotten yet their grandmother will have no chocolate for breakfast to feed them, for their grandmother will not be there. That fear is not dying. That I can do. It is leaving Peyton in this big world to fend for herself that absolutely puts me into almost a throw of insanity. One day I hope to go when I am old, and wrinkled, and used. The way we are supposed to go. When I have lived so much that there is no more life for me to take. When God calls me home in the natural order of things. But going now. Going when my daughter is 8, 15, or 21, when she will need me the most is absolutely agonizing to even think.
Today I need your help. I like to believe that we are all interlinked. We are all good. We are all love.
Visit my website today and please join me as I become a beacon for God's light. No breath is ever easy, yet no breath is ever a struggle. Walk with me, not just on May 2nd, but walk beside me in this beautiful gift and help me fight.

Summer Welch is taking strides to make "CF" stand for "Cure Found!" Visit Summer's GREAT STRIDES Home Page at http://www.cff.org/great_strides/SummerWelch! NOTE: If link looks broken, cut and paste ENTIRE link into address bar. If you are presented with a "Find A Walker" page, enter Summer's first and last name and click on "Find Walker." Then click "View Walker" in the results list to go to "Summer Welch's GREAT STRIDES Home Page."