I have admittedly struggled a lot over the past year with determining the appropriate content and direction for this blog. The older my son gets, the more concerned I have become about his privacy (both now and as he gets old enough to want his own online identity) and the less inclined I am to talk about the details of his day-to-day life on my blog.
In so many ways, his MCADD has moved into the background with each passing year. Yes, we are still keenly aware that he has it and we never let down our guard when he is ill or acting out-of-the-ordinary, it just doesn't consume my thoughts day-in and day-out like it used to when we were sleep-deprived and feeding him every two hours. These days, he is really just a normal little boy doing normal little boy things -- going to school, playing sports, climbing trees and rough-housing with his big brother. He looks and acts like all the other little boys in his class -- skinned knees, dirty fingernails, superhero t-shirts and all! In the absence of talking about all of the cute little-boy antics and the infrequent bouts of illness (that have become FAR more manageable than they were when he was a baby), I have wondered whether I should discontinue this blog altogether or whether I should simply come up with a new angle.
The good news is that I'm writing something today so I will not be discontinuing the blog. In all honesty, the thing that has motivated me to continue writing here is your emails. In the past weeks and months, I have gotten dozens of emails from other MCADD Moms from around the world who have happened upon my blog and reached out to me. Some are just saying hello. Some are asking for advice. But I can tell that for some of them, finding this blog is something they are truly and incredibly grateful for. It gives them hope and helps them understand that they are not alone in this journey that can seem so scary and uncertain in the early days of a diagnosis.
I will keep writing because that hope is exactly what I was searching for more than three years ago when I first got the news that my beautiful newborn had screened positive for MCADD. My search for hope with this curious and rare diagnosis was why I started this blog and why I will continue it. Writing here was my therapy and I hope that maybe this blog will inspire you to blog about your experience with MCADD for others to find someday, too. Then, we can spread hope together. In the meantime, reading here might become part of your refuge and hopefully part of our collective mission to raise happy and healthy kids (who just happen to have this really rare metabolic condition).
Please bear with me as I try to figure out how best to keep blogging while keeping my son out of the spotlight. He really just wants to be
