Lately I have been working through an internal battle. As a Mom everyday is exhausting. I realize because of some of the choices I have made my life is crazier than most. I chose to let all three of my children play soccer. I chose to let my oldest play select soccer that includes some travel. I chose to let my son try out for the Olympic Developmental Program for soccer, knowing he might make it and my life changes forever. But what kind of mini humans would I be raising if life were easy and simple.
However, I did not choose for Jack to be sick off and on his first three years of life. I did not choose for his ears not to drain, his tonsils to be too big and his adenoid to be such a nuisance. From 11 months old to three years old I surrendered him to a surgeon three times. Ten weeks after Jack's last surgery Madelynn required her open heart surgery. I know with 100% certainty I did not choose for Madelynn to be born with a congenital heart defect. Nothing about the last ten years has been easy and simple.
Jack has no tonsils or adenoid. He has scar tissue in his ears from multiple sets of tubes. Yet despite his imperfections I have almost forgot about those days. He was so young he doesn't remember them. If he does he has never talked about them.
However with Madelynn her story is different. Madelynn was born with a congenital heart defect for which there is no cure. The last few weeks I have read or heard that line "there is no cure" more times than I care to remember. Madelynn's heart has been repaired. A repair is not a cure. For the last few years I have treated her repair as a cure. I have treasured her leaps and bounds forward and almost forgot about those horrible days eight years ago. One of my reality checks came when one of her doctors told me until she reaches puberty he is not comfortable releasing her. I have read so many stories about CHD survivors lives change as they mature.
In an effort to try and savor what we have today, we left town for our annual Thanksgiving Exit. I did not want my life to be consumed by what could be. It is exhausting just trying to be a parent. To be a parent of children with medical needs some days is too overwhelming. We have created a tradition during our Thanksgiving Exit that we ride to the beach by bike. When she was younger Madelynn would ride by bike seat attached to the tandem bike Phil and I would ride. In recent years Madelynn attempted the ride on her own bike, the first year, with training wheels.
I have never been more stressed about a bike ride in my entire life. Round trip it is just under three miles. For a 7 and 8 years old that is a haul. Her first attempt did not go as expected. We had to tie her bike to another to pull her the last few blocks home. This year Madelynn completed the entire round trip. She didn't even need help climbing up the draw bridge and over to the beach. I was so proud of her. When we were ready to leave the beach and made it to the top of the drawbridge again I made her stop and take a selfie with me.
If at some point down the road her body matures and her heart cannot handle the change I want her to know she did it. She climbed a mountain and made it down the other side. I want her to remember and see that I have proof she is a fighter. I know that her open heart surgery is not a cure. I know that as her body matures her heart and missing part of her aorta may not be able to handle it. Sometimes I hate being reminded that life cannot be normal. However, I have proof that just for a little while it was.
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