Skip to main content

Lessons Learned

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 process. My two older sons have a decent understanding of Adam’s limitations, and they usually go out of their way to accommodate their younger brother. It’s something that neither my wife nor I taught them to do (though we do reinforce it from time to time). We want to avoid making our other children feel obligated or burdened by Adam’s condition. It’s a series of small battles we have to work through, one situation at a time, where balancing Adam’s needs versus the desires of our other children isn’t always clear. I’m proud of my two older boys. It’s not easy at times taking second fiddle to their younger brother. We try to find ways to compensate for those times that it occurs, but for the most part we’ve been blessed with very patient boys who appreciate their brother, and the things they have. I hope that as they grow older, they’ll never feel that they had to take a backseat or that their childhoods were somehow stunted because of their brother. It’s an explicit goal of ours to make sure our kids have as normal of a childhood as possible, between hospital visits/stays and everything else that goes on day-to-day.

One realization my wife and I had early on was that we would need to plan our lives around Adam in his adulthood, since as an adult, he would still have the emotional needs of a toddler. This has impacted some major decisions in our lives but thankfully, so far things seem to be working out.

Popular posts from this blog

A Little About CTD

  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 ...

Resilience

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...