The thief of joy

I vividly remember a conversation I had with a friend when our son started physical therapy. He was 5 months old and still very much an infant. He couldn’t reach his arms to grasp a toy and no matter what we did he couldn’t hold his head up. I recall telling her that at his age he wasn’t too far behind and if we closed the gap early it would all be okay. Comparing him to his peers he wasn’t that too far off. At this point in his life we had no primary diagnosis, only “developmentally delayed.”

I would look at milestone charts and see where he should be. I would quickly google “what should my 5 month old be doing?” I would compare to his big brother or whomever else had a baby his age. If there was an exercise on the internet to increase neck strength you better believe I did it. As each month went by I did the same thing. I held the checklist in my hands at his well-baby check ups and I would sob. Not one. I could never check off a single thing on those lists. I still can’t. Heartbreak after heartbreak. Comparison after comparison. I wanted so badly for him to catch up.

The gap between him and his peers has progressively gotten wider. It has taken him 3 years to get to the same place a 5 month old is at. Three years of extreme hard work and dedication. Three years of immeasurable tears. He is one of the hardest working kids I know; he’d be the only one if I didn’t know other children with CDG. These kids have to work for     e v e r y t h i n g.  Giving up is not an option. I am in awe of our son and other children affected by congenital disorder of glycosylation. I can honestly say I have never worked as hard as these kids do to achieve a goal.

As I thought about the conversation with my friend I realized that the game of catch up is over. I’m done. No milestone charts for me. I’m finished comparing. I honestly couldn’t tell you what a typical 3 year old is doing because that no longer matters to me. The only thing that matters is him and who he is. It goes without saying that we will never give up. We will keep pushing forward trying to achieve more, but checking off “the list” isn’t on my list anymore. I simply want him to thrive.

Instead of focusing on how far he has to go I’m focusing on how far he has come.

Instead of sobbing at the check lists at his check ups I’m bringing my own list filled with what he CAN do.

Instead of googling milestones I’m celebrating progress.

He will continue to work harder than anyone I know. For. Every. Little. Thing.  And because of that, I can’t compare him. There is no comparison.