Missing Puzzle Pieces by Joanna Kent

My son is like a puzzle. One with no directions, no picture, and guess what, it’s missing a piece – or in his case 3 pieces. Sure, we know where the missing pieces are, or should I say aren’t, but it impacts other puzzle elements as well.

There are days I look at my son, and I wonder, does he know he has an itch? Do you ever have an itch and think about it? I do, now, at least. I pay attention to if the itch can go away on its own if I don’t touch it, and if so, how long did it take? Because my son has never scratched an itch. Sure he has rubbed his face when he was tired, and possibly when he had an irritation in his nose for all I know, but this child has never once in his almost five years of life taken his finger and rubbed his arm or leg for an itch.

I’ve thought to myself how uncomfortable it can be when you need to blow your nose. I don’t know about you, but I can’t go a day without needing a tissue in some way, but my son has never picked his nose. Sure his finger has ended up there, but never in the way a child does when looking for something very specific.

Ever wake up and your foot, arm, hand, whatever body part, is asleep? What would he do? How would he react? Would I even know?

Coughing, sneezing, clearing your throat, all the things we do at times to make ourselves more comfortable, he rarely or never does. Does he cough from choking on his water, sure, but a cough to clear his throat? Never.

My son eats whatever you put in front of him. I have no idea what he likes or doesn’t. How is it even possible to enjoy everything I have ever given him? It just isn’t. There is no baby, toddler, and now a small child who likes everything their parent makes or buys for them to eat, except for my son, it seems.

My son is like a puzzle that is missing pieces, and yet here it still is. It still needs to be completed as much as possible. The stability of the entire puzzle is compromised in ways I even don’t understand.

The more I think about my son as a puzzle, the more I feel this bitter taste in my mouth. I think about how easy it is to make judgments. For example, if you had a puzzle at home and missing pieces, what would you do? I would get rid of the puzzle. It isn’t any good, it can’t be finished, and it will always leave me wanting.

By the time I finished writing this, I didn’t want my son to be a puzzle. Because even though his DNA is flawed, I love what is there. I love what isn’t missing. I mourn for what is, and I realize that no amount of looking – at least in his lifetime – will I be able to find or replace those missing pieces.

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Joanna Kent
Joanna is mom to a "typical" 7-year-old and a special needs 4-year-old son with a rare genetic disorder. She is a full-time mom, caregiver, and content creator for OHS. She wants to share experiences hoping that others can benefit from what she has learned along the way.

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