Happy Transplant Birthday!!! 10 Years Ago

Ten years ago today, we had hope. We had everything. We were going to survive. We had put our baby through tortuous days of chemotherapy. We had put poison (chemotherapy) into Christopher’s little body in hopes of wiping everything out and starting over. We held him as he vomited and convulsed. I would lay in the crib and would wrap my body around him as he shaked and moaned from pain when he was 7 months old. He had emergency surgery (again and again and again). We were told numerous times, he might not make it, but it was Christopher, I knew he would. When the doctors would wheel his little body to surgery, I would close my eyes and pray. I would pray to God to let me change places with him. I’ve had very rare open heart surgery twice. I would ask God to take me to surgery instead, let me have open heart surgery a million times over, without anesthesia. I would visualize it in my head, take me, instead of him. It seemed like a fair deal. I was an OR nurse, I knew how these things worked. When he was in surgery, I would crawl up in a ball in the floor of the waiting room, I would beg and beg and beg God to let me switch places.
The transplant was going to save his life. We had a good transplant, we had awesome cells. They went to work and set up camp like soldiers, they engrafted quick. Someone had given us the gift of life, and that is what we were going to have, a wonderful life. People held prayer vigils over and over. I made up business cards with his picture and website. I gave them to complete strangers and asked them to pray for this baby. I was crazy obsessed with saving his life. Than he was given a medication error, an overdose of immunosuppressant’s, and, the bottom fell out. Life became about the PICU, and more surgeries, and monitors and dialysis and breathing tubes, and comas, and six months later he was gone. We blinked our eyes, and the 410 days of life we were allowed to have him were over and we have spent almost 10 years, recovering from those 410 days…
This year of “10” has been crushing. His 10th birthday last year, this year his ten year transplant anniversary, and in June we will have said goodbye ten years ago. A whole decade, a marker… A decade is a defining moment, a marker in time. Again, another solid reminder of how much time it has been since I last held him.
I know people don’t understand why I still grieve, why his picture is still on our Christmas card, why some days I just want to cry. For a very long time, it was important to me for people to understand why I still grieve. I no longer feel that way, for if you understand, that means you have walked the same path, through the hell I have walked, and I wouldn’t wish that on my worse enemy. I have stopped asking “why”, why did this happen?? I have looked high on mountain tops, I have looked low into the waves at of the ocean. I have looked around corners, and in books and on the internet and on Sundays sitting in the pews at church for over 10 years. I have gone to his grave and begged on my knees to understand why this has happened. The conclusion I have come to is there is simply no answer for why. I do not believe his death was “God’s plan”. I don’t believe God put him on this earth, knowing he would only live for 410 days to simply take him away again. I have a hard time believing in a God that would let that happen. I think things happen, I think there are tragedies and illness and disease that is as great as god. I think we were given a shitty hand. You can pray, you can give medication, you go to a million doctors, but sometimes at the end of the day, things aren’t meant to be and there is no reason for why. Looking back now, realizing how catastrophic his disease truly is, I don’t think we ever really had a chance of him living. We were just chasing a pipe dream of being able to save his life.
When I shed a tear for Christopher I have people remind me how “lucky” I am. I have Katie and Andrew, isn’t that enough? They are right, I am a very “lucky” person, I know this. I am lucky because women with my type of heart defect, women that have gone through the surgeries I have, don’t always have children. I am “lucky” because I was told I might not ever have children, and I had three. I have an EKG that looks like crap and every six months when I walk into my cardiologist office he starts off our conversation by saying, “Well, I thought you’d be doing really bad by now, but you’re not.” Nobody realizes how lucky and blessed they are more than I do. But I ask you this, If one day, fate plopped down and stole one of your children, if you could never kiss them or hug them, or fill their little stocking at Christmas would you feel lucky? Would you want people to “remind” you that at least you have other children? It doesn’t work that way. When your child dies you don’t need to be reminded that you have other children so therefore you are a very lucky person. Other children don’t replace the one that is missing. When someone loses a spouse, we don’t tell them how “lucky” they are. On Christmas Day this year, we left the kids at home and went to the cemetery to place white roses on his grave. I wept at his grave because I would rather have filled a stocking on Christmas than put roses on a grave. Putting roses on my child’s grave on Christmas Day, is not something you feel lucky about.
You look for blessings where you can find one and the one I have stumbled across this year is how very glad I am that Katie never saw him hurt. She never had to see her brother cry and vomit, she never had to see the central line hanging out of his chest, and we never had to sit her down one day and have the devastating conversation that her brother was gone. It breaks my heart for the families that have had siblings that have seen their brothers or sisters go through an illness only to lose them.
Katie has a heart just like me. I’ve known it since the day she was born. Our hearts are wired differently than other people’s. We feel and experience things at a greater depth than other people do. We are sensitive to the ways of the world, and we love all those around us very, very, deeply. Emotions, feelings, they are magnified 100 times with us, that what makes her and I tick. Even though she never met him, she misses Christopher, she misses him deeply. She has, in her own way, grieved his death. She misses the “idea” of him. She told me last week, as she has for many years, she wants to play with him and wonders if he would have been handsome like her little brother Andrew. She has always told me she wants to see him, hold him, touch him. I have told her if he survived he might not have been like Andrew, able to jump and play and run (not that it mattered). Last week we were in a store and she saw a boy in a wheelchair. She turned around and asked me, “Mama, Christopher would have been in a wheelchair right?” “Probably I replied.” Her response was one that reconfirmed that deep heart she has, “Mama”, she replied, It wouldn’t have mattered to me, I would have loved him that much more.”
Katie and I have had conversations with her in my arms and both of us crying from the pain of not having him, and me not being able to make it better for her. I took the advice of another bereaved parent I met, and in the spring we made a Build a Bear. Just her and I, we put in one heart for her, one for her brother, and when she misses him she hugs it, that is the way she can touch him. She sleeps with it every night. She takes it whenever we go on trips, and I am so grateful for that bear. She has so many questions, On New Year’s Eve she went to our pastor and Katie asked her, “Why did God put my brother on this earth only to take him so quickly?” Such a deep heartfelt question for a child that’s only 8 years old. A question we will never be able to answer. To lose a child is devastating, to see their brother or sister feel pain because of their absence, is another slap in the face that he is gone.
Kids aren’t surviving pediatric diseases. They just aren’t. Hurler’s is too devastating. There are treatments, but there will never be a cure. Unless we get better research funding, and better treatments for chemotherapy for children and drugs made just for children, they won’t survive. I know my calling is to help people. I have reached a point in my life where all I want to do is help others. I want to help these kids more. I want to help other parents that have lost a child. It’s what makes me tick, and it’s what makes me feel closer to Christopher. It’s what will help me find peace. I truly believe this is my calling. 

We are halfway through this year of “ten” … The decade will come to a close soon and another marker in time will be gone. We are turning a corner. The pain is still there, it’s just a different corner. Even though our blue skies can be tinged in gray some days, we have a beautiful life, an awesome life. We moved this summer into our dream house. It took me months to figure out the bedrooms upstairs. I couldn’t get the rooms settled in my mind. There are four bedrooms upstairs; a master bedroom, a purple butterfly room and a blue Virginia Tech Sports room. That left one empty room, it didn’t feel right. It felt empty, hollow, like something so precious was missing. Because it was….
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