This is my(Barb) friend Lisa. Lisa has not only had to battle Chronic Illness with one son, Aiden but her youngest son Mason as well. Through all the turns, turmoil and tragedies she has dealt with each one head one and with a grace that has a beauty of it's own. It is my privilege to have her as a guest blogger on our site today because her and her husband Joey's heart. I hope you enjoy her blog as much as I do. Thanks Lisa for your time and your love. Barb and Kim
Aiden's Radiothon Fundraiser: (If you would like to help Aiden in his mission go to Team Aiden on Facebook and email his Mom Lisa)
When Aiden was born 8 1/2 years ago, I didn't know he would be sick. I didn't know he would need a transplant. I never knew he would struggle for years with complications that couldn't be fixed, and weren't understood. I only knew, I had a baby boy. A new beautiful baby boy that I had hopes for. I had hoped he was kind. I had hoped he had a heart for God and was strong and giving. I never knew the obstacles he would be facing.
This path of chronic illness has carved him, shaped him, and developed him stronger in areas, and weaker in others. It is like a rush of water against a soft shore, taking pieces of it with each crash. I remember him at two, already had been transplanted, and coming off of yet another rejection. He was loud and vivacious, strong and full of toddler fury. He drag his IV poles, crashing through doors, filling the hospital halls with his contagious laughter. I love thinking of him like that. Seemingly so unaffected by it all.
Years have past and the waves crash harder on that soft shoreline. He has lost a close family friend, because her organ didn't come in time. He has seen so many children sick in the next hospital room with out Mommy's and Daddy's to hold them. He calls them "strays" and is confused to why they are always alone. He has been teased by children calling him short or saying he doesn't look old enough to be in 3rd grade. He has sat in doctor's offices while they have discussed terrible side effects, possible outcomes, and risks and benefits as they forget he is there, listening, fearful.
I have prayed that as God has allowed this, that he would apply a grace over him, stronger than anything his father and I could teach him. Allow him to have a strong sense of peace and most of all let this be used for good, for the Glory of God.
A few weeks ago, Aiden received a note in the mail, reminding him of the upcoming Radiothon for his local Children's Hospital. He read the note and immediately came up with a plan. His green eyes lit up, as he read it. He looked up and announced he wanted to raise money, "to help the sick children". It was unprompted, his idea. An idea pure from the heart. My mind immediatly thought back to myself holding him as an infant, praying and hoping he would be kind, giving, and a child of God. What a road this little guy has traveled, but yet the destination is exactly as I had prayed for.
Aiden has worked hard to raise money, a coin drive has started, and now with the help of many friends there are jars and collections happening in so many places. It is such a gift to see Aiden get power of his disease by doing something to help others. My heart is overflowing. Over the years I have been so fearful.
Would he he just be immune to the illness since he sees it all the time?
Would he just turn an apathetic cheek, or would he choose compassion and look on others the way we hope others look on him?
I am so proud to see that he has chose this path. I know that innocent 2 year old HAD to be shaped and molded by the raging waters to turn into this little boy that has grown to be such a warrior for other children.
I never planned this life. Living with an IV pole in my living room. I never imagined we could be still on the frontlines so many years later, yet be so full of Joy. The grace I prayed for to fall upon Aiden, is shinning this very week as he counts to coins, and wraps the pennies. It may not have been how I had hoped.. but Aiden is exactly every bit the child I dreamed he would be the day I first looked in his eyes.
Sunday, December 5, 2010
Thursday, November 4, 2010
A little Sweeter by Kim Avery
Life a little sweeter
Posted 2 days ago
Things have been going very well here. I wish I could tell you exactly what has made the difference for Tyler and Thomas lately. It’s very hard to know with their illnesses cause and effect. Even good cause and effect. Perhaps it’s the medicine the boys began a few months ago. Our doctors here felt it was worth trying this new med even though it is not available in the U.S. So we enlisted the help of our friends around the world who have stopped at nothing to get enough medicine for the boys. Literally these super heroes traveled by planes, trains, and automobiles. One even faced extreme conditions including illness and floods to meet and relay the medicine to us. Thank you! Thank you!
We are very hopeful that this medicine is working. Perhaps stabilizing them and helping them stay out of the E.R. but only time will tell. I cannot express how happy it makes me that Tyler has not missed any school and that Thomas has not been back to the E.R. It’s still fresh in my mind that in a season not so long ago we were in the hospital every other week.
Of coarse as you would imagine as a family we do not take health for granted. But I am delighted to realize that beyond that our children seem to have an appreciation and perspective about everyday life that is such a blessing.
The unpredictability of chronically ill children's lives is often overwhelming for them and their families. You would think that many of these kids would be a mental mess, drowning in disillusionment and self-pity. I have found the opposite to be true. Chronically ill children are often some of them happiest and most content people I know. I have come to realize that much of it steams from their perspective. Along with all the misery that accompanies being ill seemingly comes a gift - an incredible appreciation for life.
Tyler’s friend Olivia has been through more pain and life threatening uncertainty than any other child I know. And yet, in spite of it all, her enthusiasm for life is remarkable. I was privileged to spend some time with Olivia a few weeks ago and it was one of life’s moments I will never forget. She hugged me and with a huge smile said “Guess what Mrs. Kim? I got my tube out just in time for you to take my picture and next week I am having surgery to get my stint out. Isn’t that wonderful?” Shining with an inner joy she continued, “I am so grateful.”
Grateful? Two transplants, stints, cystic fibrosis, diabetes, not to mention hundreds of days in the hospital in agonizing pain? But there it was. Gratitude and appreciation. Her refreshing outlook amazed me. These chronically ill children really do view each moment as God given. It's a perspective that changes the way they perceive everything.
A dear friend of mine recently taught a class to Tyler’s scout troop entitled "Citizenship in the Nation." My friend relayed to me later that when they discussed the phrase “endowed by their Creator with certain unalienable Rights, that among these are life, liberty and the pursuit of happiness.” Tyler raised his hand and gave a short dissertation on what he believed. He discussed how the phrase refers to the “pursuit” of happiness not the guarantee of happiness. He talked about how he believed the two were very different perspectives.
I know Tyler, like many other chronically ill kids, often sees the world in a very special way. Maybe the way we all should see it. What would our lives be like if everyday we woke up thrilled just to be healthy? If everyday, in spite of circumstances, we were excited about the possibilities of today and humbled by our ability to pursue happiness to the fullest. What if we viewed every breath as a God given gift and not a guarantee? Maybe for all of us our problems might not appear so overwhelming. Perhaps the sun would seem a little brighter. The grass would seem a little greener. And I suspect, just like for Tyler and Olivia, every moment would seem a little sweeter.
Posted 2 days ago
Things have been going very well here. I wish I could tell you exactly what has made the difference for Tyler and Thomas lately. It’s very hard to know with their illnesses cause and effect. Even good cause and effect. Perhaps it’s the medicine the boys began a few months ago. Our doctors here felt it was worth trying this new med even though it is not available in the U.S. So we enlisted the help of our friends around the world who have stopped at nothing to get enough medicine for the boys. Literally these super heroes traveled by planes, trains, and automobiles. One even faced extreme conditions including illness and floods to meet and relay the medicine to us. Thank you! Thank you!
We are very hopeful that this medicine is working. Perhaps stabilizing them and helping them stay out of the E.R. but only time will tell. I cannot express how happy it makes me that Tyler has not missed any school and that Thomas has not been back to the E.R. It’s still fresh in my mind that in a season not so long ago we were in the hospital every other week.
Of coarse as you would imagine as a family we do not take health for granted. But I am delighted to realize that beyond that our children seem to have an appreciation and perspective about everyday life that is such a blessing.
The unpredictability of chronically ill children's lives is often overwhelming for them and their families. You would think that many of these kids would be a mental mess, drowning in disillusionment and self-pity. I have found the opposite to be true. Chronically ill children are often some of them happiest and most content people I know. I have come to realize that much of it steams from their perspective. Along with all the misery that accompanies being ill seemingly comes a gift - an incredible appreciation for life.
Tyler’s friend Olivia has been through more pain and life threatening uncertainty than any other child I know. And yet, in spite of it all, her enthusiasm for life is remarkable. I was privileged to spend some time with Olivia a few weeks ago and it was one of life’s moments I will never forget. She hugged me and with a huge smile said “Guess what Mrs. Kim? I got my tube out just in time for you to take my picture and next week I am having surgery to get my stint out. Isn’t that wonderful?” Shining with an inner joy she continued, “I am so grateful.”
Grateful? Two transplants, stints, cystic fibrosis, diabetes, not to mention hundreds of days in the hospital in agonizing pain? But there it was. Gratitude and appreciation. Her refreshing outlook amazed me. These chronically ill children really do view each moment as God given. It's a perspective that changes the way they perceive everything.
A dear friend of mine recently taught a class to Tyler’s scout troop entitled "Citizenship in the Nation." My friend relayed to me later that when they discussed the phrase “endowed by their Creator with certain unalienable Rights, that among these are life, liberty and the pursuit of happiness.” Tyler raised his hand and gave a short dissertation on what he believed. He discussed how the phrase refers to the “pursuit” of happiness not the guarantee of happiness. He talked about how he believed the two were very different perspectives.
I know Tyler, like many other chronically ill kids, often sees the world in a very special way. Maybe the way we all should see it. What would our lives be like if everyday we woke up thrilled just to be healthy? If everyday, in spite of circumstances, we were excited about the possibilities of today and humbled by our ability to pursue happiness to the fullest. What if we viewed every breath as a God given gift and not a guarantee? Maybe for all of us our problems might not appear so overwhelming. Perhaps the sun would seem a little brighter. The grass would seem a little greener. And I suspect, just like for Tyler and Olivia, every moment would seem a little sweeter.
Thursday, July 1, 2010
So this is my friend Kim. Hilarious as she describes just one day in the life of "Tyler" and this is the reason we became fast friends. You see, both of us have kids that are complicated, medically. When I hear Kim, I really think life is easy for me, and vice versa. But, we are great at playing off each other, describing and analyzing our problems to the point of bust a gut laughter. Because when you have kids that have specialist, well, you just have to laugh. And most of all, you have to have friends. Friends that are honest, truth seekers and non-sympathizers. You know what I mean, the ones that don't feel sorry for you and will take a moment, read your mail, and tell you to get on with life. So, that is what Kim and I can do for each other and we are hoping that as we start on this road to blogging that some of you will want to join us. We want only what is best for our kids and sometimes that means a myriad of things. So sit back and laugh, cry, empathize and even yell at times as we journey together. Ask questions, throw out idea's...be a part of this journey we call "real" life...kids with special needs, chronic illness, and our families and friends along the way. Pulling, dragging, shaping and loving each and every day we have....
Posted Mar 1, 2010 7:47pm
Have you ever seen the movie "Vacation?" Do you remember the part when Clark Griswald and his family arrive at the amusement park after days and days of a crazy nightmare trip trying to get there and the park guard tells him "The parks closed. The moose out front should have told ya." Remember how Clark absolutely loses it?
I can relate!!! We saw cardiology last week who said its not their thing "Someone should have told you. See a Nephrologist and genetics." We cannot get into nephrology for weeks. How silly are we?
We jumped through hoops got an appointment with a renowned geneticist. Genetics confidently says "this is obviously a cardiology problem but you need an autonomic cardiology specialist. Here is his name. Go see him." We quickly made an appointment for today to see the autonomic cardiologist specialist who would, just by title, know more than the regular cardiologist. Right?
After a great week and a half Tyler woke up very sick this morning. He had low blood pressure and was in significant pain. It just seemed so crazy. He had even been well enough to enjoy skiing with friends last Wednesday....but that's how these cycles have been crazy and unpredictable. We called his own doctor early this morning who advised, that none the less, the object was to get him help from someone who knows..."Keep the appointment."
So we carry him to the car and drive two hours in morning traffic to the other side of Atlanta. Its only when we arrive in the waiting room that we are cheerfully greeted by a large Moose......no wait, a receptionist who says, "the doctor is coming to talk with you. He has read your chart and feels that Tylers case is so complicated that he really cannot help." Obviously how could he possibly help....in all his training this doctor had not mastered the use of the complicated device we call a TELEPHONE. "I'm not sure why you are here." He explains "its not really my thing someone should have told you."
When I get a hold of this someone I am going to let them have it!!!!!
Poor Tyler then had to endure another hour and a half ride home. After several more phone calls while Tyler was pleading at four o'clock today home health care hooked him up to I.V. and he is finally resting. We have also spent the last few weeks making what seemed like hundreds of phone calls to programs who WILL NOT accept anyone under 18 in their autonomic programs.
"I guess SOMEONE should have told us."
Posted Mar 1, 2010 7:47pm
Have you ever seen the movie "Vacation?" Do you remember the part when Clark Griswald and his family arrive at the amusement park after days and days of a crazy nightmare trip trying to get there and the park guard tells him "The parks closed. The moose out front should have told ya." Remember how Clark absolutely loses it?
I can relate!!! We saw cardiology last week who said its not their thing "Someone should have told you. See a Nephrologist and genetics." We cannot get into nephrology for weeks. How silly are we?
We jumped through hoops got an appointment with a renowned geneticist. Genetics confidently says "this is obviously a cardiology problem but you need an autonomic cardiology specialist. Here is his name. Go see him." We quickly made an appointment for today to see the autonomic cardiologist specialist who would, just by title, know more than the regular cardiologist. Right?
After a great week and a half Tyler woke up very sick this morning. He had low blood pressure and was in significant pain. It just seemed so crazy. He had even been well enough to enjoy skiing with friends last Wednesday....but that's how these cycles have been crazy and unpredictable. We called his own doctor early this morning who advised, that none the less, the object was to get him help from someone who knows..."Keep the appointment."
So we carry him to the car and drive two hours in morning traffic to the other side of Atlanta. Its only when we arrive in the waiting room that we are cheerfully greeted by a large Moose......no wait, a receptionist who says, "the doctor is coming to talk with you. He has read your chart and feels that Tylers case is so complicated that he really cannot help." Obviously how could he possibly help....in all his training this doctor had not mastered the use of the complicated device we call a TELEPHONE. "I'm not sure why you are here." He explains "its not really my thing someone should have told you."
When I get a hold of this someone I am going to let them have it!!!!!
Poor Tyler then had to endure another hour and a half ride home. After several more phone calls while Tyler was pleading at four o'clock today home health care hooked him up to I.V. and he is finally resting. We have also spent the last few weeks making what seemed like hundreds of phone calls to programs who WILL NOT accept anyone under 18 in their autonomic programs.
"I guess SOMEONE should have told us."
Tuesday, June 29, 2010
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