A Conversation of Love & Second Chances

I remember the day like it was yesterday, the birth of our first child. He took what seemed like forever to come, but when I held him in my arms, I couldn’t believe how perfect he was. I had imagined all during my pregnancy that chubby face, no hair, and pink skin. I pictured every second of those first days, every outfit, every photo, every sweet moment planned out.

When his doctor came in to tell me that there was something wrong, I really didn’t understand. He told me that he was jaundiced. Oh, ok! Jaundice is normal; put him in the sunlight, right? It was more than that. My 9 lb baby boy was now being moved to the sick baby unit. I saw him, with all of his rolls and girth, next to babies that weighed fractions of him. It seemed like they had the wrong baby. There had to be some mistake!

Doctors came from the children’s hospital and began to explain that there was something very wrong with our baby.  Even though everything looked fine on the outside, on the inside, his little body was sick.

It was weeks of tests and pokes and sleepless nights in a chair next to his hospital crib. I was still wearing my maternity clothes, I couldn’t accept what was coming. I just thought if we could wait a little longer, that little baby would come home and this would end.

A surgeon met with us explaining that they couldn’t diagnose him without doing an exploratory procedure. Big words and diagnoses were mentioned and it was all so unfamiliar. I remember scrambling, looking for some information on this disease, but all I could find was ‘rare‘ and ‘deadly.’ I remember sitting in the surgery waiting area with family and friends surrounding us. I sat and waited for the surgeon to call and tell us they didn’t find the disease we had dreaded. When that phone rang, I stood there in shock when I heard the words. “I’m sorry, but Aiden has Biliary Atresia, and we now need to continue to do more surgery to help correct what is wrong.”

Would he ever be normal? Would he ever go to school? Play sports? Fall in love? 

Aiden, Christmas 2013.

Aiden, Christmas 2013.

His disease has no cure. It is fatal if not treated, and the only treatment is a surgery that usually fails by the time the child is a few years of age. Aiden’s surgery failed in a matter of weeks.

We sat in a cold doctor’s office listening to the news that we dreaded, and in one single moment we were changed. Our baby needed a liver transplant or he would not live to see his first birthday. I couldn’t understand why they didn’t just DO the surgery. Why were we waiting? I had no idea about the grim reality – our nation has a critical shortage of organs.

Studies have shown that 95% of Americans believe in organ donation. So why is there a national shortage? Why of those 95%  are only a small percentage actually becoming donors? The answer is a simple one. People don’t like to talk about death.  It is inevitable, yet still taboo.

It seems so sad to me that the moment parents like us hear those terrible words, “Your baby needs a transplant or he will die,” that we can’t just do the transplant. Instead, in our country, because of the lack of donors, people and children have to go to the brink of death in order to get high enough on the list to get their second chance.

Over the years, I have realized there is such a simple fix to this devastating problem. We just need to talk about it. For one single day. 5 minutes of your day, just talk about this topic that everyone avoids. Tell your loved ones. Tell your spouse. Tell your parents.  Tell your children. Tell someone who would be making that decision for you, for one day. It’s one, quick conversation.

Lisa and Aiden

Lisa and Aiden

“But I signed my driver’s license.”  That is what I thought when I heard about this shortage. I then found out that 95% of Americans also sign their driver’s license. However, did you know that has no baring on whether you become an organ donor? Our next of kin makes that choice. So you have to ask yourself, ” Have I ever TOLD them what my wishes are?” Instead of being uncomfortable with that conversation, think of that conversation as a gift to them.

If, God forbid, something terrible ever happens to you, in that moment of sadness, it would be a great burden to have to decide what your wishes would have been. Give them that gift now, so if it ever comes to pass, they can make that choice for you knowing it was your last request. When reading stories from families who have donated a loved one’s organs, you hear stories of healing. Hope in dark places. Peace. When I look at my son and see him now at 11 years old, I feel gratitude and thankfulness.  We are whole.  If it were not for a family making that selfless choice during a time of sadness… he wouldn’t be here.  My son’s new liver came at his last moments, just in time. And now he is 11 years old, full of life.

So there, we talked about it. It wasn’t that hard. We spoke about a subject that feels strange, maybe makes us sad, or reminds us of things we don’t want to think about. In doing so, we might change that small percentage of the 95% and get closer to actually having everyone who intends to be a donor, actually be donor. We can help with the terrible losses that people are experiencing. We could possibly end the wait for hundreds of thousands of innocent people.

Recently, in a matter of weeks, three babies with the same disease as my son died waiting for their second chance. It is so hard to imagine the pain those parents are feeling. I can barely stand the thought of them going home with that huge hole in their hearts. Most people don’t know that babies and children sit on the wait list, and even worse, pass away waiting.

Today after the kids are tucked into bed, or your day has ended, take 5 minutes and just say, “Hey, I read this blog today and I wanted to make sure you knew my wishes…..”

Please consider organ donation and saying yes. One person can save up to 8 lives and be a hero in a tragedy. I can’t go back to those early months of my son’s life and change what happened.   His disease has no known cause or reason, but maybe it will have some purpose.

Aiden

Aiden

www.donatelife.net

Lisa Hawk is an inspiration to all who know her. Between juggling all the activities of 2 boys, she tirelessly continues to advocate and volunteer her time for kids’ health. She enjoys refinishing furniture and cheering on the Florida Gators (especially when they play her husband’s GA Bulldogs)! Check out Lisa’s site – Spotted Hen Designs.  [MH note – I’m the lucky one who has “Bertha” in her dining room!]

Speak Your Mind

*