Sometimes it feels like everything just piles up – from the challenges of being diagnosed, seizures, hospital stays, to the complications we encounter every day.
Most recently we are facing the tonsillectomy decision. BUT he takes straight sodium 3 times a day – orally. Can’t a boy with GAMT get a free pass? Planning a trip, and having to work with TSA and their guidelines and our “suspicious” white powder. Deciding whether or not to send our kid to kindergarten with his class or to wait out a year, and wondering if we are too lax on his diet (lack of restrictions). On top of everyday parent worries, we are left with the wonders and worries of the long-term effects of what the massive amount of creatine is doing to his little kidneys. Some days when all is said and done, we sit and wonder…why us?
Why us? How come we were so lucky to get an accurate diagnosis so early in life? Why are we so fortunate to live only an hour away from a fabulous pediatric hospital? Why is treatment so easy? Geez, Levi has friends with food allergies that have a harder time out and about than he does. Why are we so blessed to have this special boy in our home, our family (one of 80 in the world)? He is such a gift. Why us?!
Joining this group of fellow creatine deficiency families has given us strength. It is so nice to know we are not alone, and can be here for one another. I hope our experiences will help any of you out there who might be in the beginning stages of the “why us?” You are not alone, and that sweet child of yours will help you start to understand the “whys” in your life. Ours sure has!