“I’ve never tried to block out the memories of the past, even though some are painful. I don’t understand people who hide from their past. Everything you live through helps to make you the person you are now.” ~Sophia Loren
A year ago today my doctor called to let me know that prenatal tests lead to the suspicion that Chance might have a neural tube defect. Though we didn’t hear the definitive diagnosis that he had spina bifida until a day later – at that moment during that brief conversation with my doctor I knew something was wrong. I was beyond frightened and it felt like the end of the world hearing that something might be wrong with my baby boy. A year ago I didn’t even know what a neural tube defect or spina bifida was. I had heard of them both but all I could associate with either was the negative thoughts of how something would be terribly wrong.
A year ago I was worried about how much might be wrong with my sweet baby boy. I thought more about all the things he might not do…little did I know just how much he’d change our lives and prove to us just how amazing he’d be.
A challenging year we can now begin to put behind us. I imagine the weeks ahead as October passes I’ll likely remain reflective of the month that followed the diagnosis and all the memories of the heartache and how we’d remain strong enough to not give up…of not just the diagnosis…but the decisions…and how we’d come to make one of the toughest and best decisions of our lives. As tough as it is passing these anniversary moments for the first time it is uplifting seeing just how much life has changed for the better. A year ago if someone would have told me with certainty that we would have went through this many challenges in just a year I don’t know how much differently we’d have reacted with the decisions we’ve made because it’s surreal to see what we’ve experienced…many of those same things I feared and prayed would never happen…have happened. But I’m incredibly thankful we maintained the strength to hold onto hope for this sweet baby boy of mine because he has not only changed our lives…but he’s touched the lives of so many others who have somehow been affected by spina bifida. I can’t imagine what life would be like without him here now. Even with every challenge we’ve been faced with – it’s been worth every moment having him here.
I’ve had many of you asking how Chance has been doing since his surgery this past weekend. Perhaps this photo will help you see first hand…yeah, it’s kind of tough to believe just a couple days ago he went through another shunt surgery when you see this sweet smile of his.
He really has to be getting better. I admit I’m compulsively checking on him and fearful of his shunt that has failed him so many times. Last night he was fussy several times through the night and I’d compulsively check his soft spot to see how he was doing. His shunt problems might make me crazy before long. At times it seemed a bit more firm than when we left the hospital but not enough for me to totally stress out so for now I’ll just keep watching him and praying he doesn’t present any other symptoms of having shunt problems.
Here’s one last photo taken today…of this amazing baby boy of mine who has changed my life so much in the last year. I don’t know if I’ll ever completely stop worrying about the things he might never do…but I’m learning more and more every day that it’s not the things he won’t be able to do that define who he becomes. In time he’ll prove on his own all the things he’s capable of…and well, we already know that regardless of the challenges he has ahead he’s destined to do amazing things…then again, he already is.
by Amanda Kern
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