Speaking For Adam

The Last 18 Months Have Been… Pretty crazy overall. Between grappling with Adam’s condition, his vomiting, getting him the services and help he needs, plus a necessary move, it’s been an extremely busy time for our family. In all of the frenzy, I’ve found Adam to be a real source of comfort despite the stress of the consequences of his condition (CTD). The logistics required for us to support Adam on a day-to-day basis are….considerable. They challenge us and make us better in different ways. It’s a bit surreal to see how others interpret or try to relate to our situation. “Don’t worry he’ll get better” or “I’m sure they’ll find a cure” are a couple of things that individuals with the best intentions will say, but oddly, it twists the knife a bit because we know that neither of those things will happen for him. We empathize with others that have special needs children in that subtle way that you would relate with those that you have experienced something deep with, together. There’s an...

Small Victories Adam started walking in March of 2019. He was 3 months past his 2nd birthday. This was a huge milestone for our family because he had been knee-walking for many months up until that time, which I can tell you, is painful. Every morning right around the time of sunrise, Adam gags. You know, the kind that follows bouts of nausea just before you vomit. This happens almost without exception because I’m usually awake for morning prayers. I admire my son because he always maintains the most positive and playful disposition despite having a rough day, every day, by almost anyone else’s measure. The highlight of his day is when he’s around family. It’s what he seems to thrive in the most. Adam has also been a lot more playful with his siblings who have been sources of joy and comfort for him. The bond between siblings is something many of us can attest to, but watching my 4 and 6 year old sons interact and actively care for Adam’s emotional well-being is difficult for me to pro...

Everything shut down The aftermath of Adam’s diagnosis was messy. I felt like Adam’s condition was suffocating me. It was as though life had just come to a complete halt and I lacked direction because all that was in front of me was Adam’s condition. It would never end and he would never get “better”. My idea of “normal” ceased to exist and I had to grapple with an entirely new, uncharted reality that only a handful of families in the world knew anything about. As someone who prides himself in having things figured out I felt like I’d lost control, which, as many men will never admit because we’re awful at emotions: is the most unsettling feeling. In that context, I’ve survived because I have been blessed with a wife who is stronger than anyone realizes. I’ve never told her (or anyone) this, but the reason I was able to keep myself together was because of how she held everything else together. Make no mistake, my wife suffered severely, but she did so quietly and to herself. She suffer...

  Creatine Transporter Deficiency When my wife and were still searching for answers as to why Adam had such significant developmental delays along with constant vomiting, we decided that with the battery of tests being conducted during our hospital visits, we would also go ahead and run a complete genetic test for myself, my wife, and Adam. Just to make sure. This test would look at each of our genetic codes and map them to every known possible disease to find a potential match, or indicators. It was an extensive enough test that it took several months to get the results back. Months later the results were in. Adam was diagnosed and my wife and I were told that each of our genetic codes showed no trace of anything whatsoever. Literally nothing. Under any other circumstance this would have been great news, being given a genetic clean bill of health. They classified Adam’s condition as having resulted from a completely random and extremely rare genetic mutation, otherwise known as a ...

Where to begin? Adam keeps vomiting everything up. These were words my wife would tell me increasingly after our son Adam was born. He is our third son out of four children and at the time I remember, in my undying optimism, telling her to disregard it as he was just a few months old. Babies do that, you know. At 7 months, Adam was in the .02 percentile for weight. No, not 2%, but .02%. I felt like a failure as a father, and I can’t imagine how my wife felt who worked tirelessly every single day and every single night to feed him while balancing our two other boys. He was hospitalized for the purpose of running through a series of GI tests and MRI’s, as well as a DNA test in a very short period of time. Within 24 hours, he was put on what’s called a NG tube. A note about NG tubes. People might tell you it’s not a big deal and that plenty of people have them. But watching a nurse pin my 9 month old son down while another shoves a plastic tube through his nose, down his trachea and into ...