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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.

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