Picture Perfect by Joanna Kent

Did you see that picture? That cute picture of my daughter with her brother? The one that you couldn’t even tell my son wasn’t neurotypical if you looked fast enough? So, yeah, that is fake because the reality is what was happening when I took that amazing photo.

[…] as a mom, I adore these smiles.

Things you can’t see by that photo are that my son wouldn’t walk for himself at the playground that day. That he kept trying to eat the mulch, dropping his body to grab it. How it took two adults, one at the top and one at the bottom, to go down that slide with his sister. He’s five. This isn’t how it’s supposed to be.

The reality of pictures in my home is they aren’t the reality of what happens in our home.

As you can see, both children are smiling. Both children are insanely happy. That much is so true. And when I look at this picture as a mom, I adore these smiles. I think my mother-in-law will want it in her picture frame, and their aunts and uncles will smile at how cute the kids look. But behind the photo, I feel sad. Maybe even a little angry at the world.

The struggle of looking at the past can sometimes be a slap in the face […]

The other reality is how many photos I don’t take. I do take short video clips and pictures here and there, but there are times I feel so overwhelmed by everything that happened previous to that “picture perfect moment” that I can’t even take the photo.

Some days, there are “memories” from my old photo app that I used to get prints made. Or social media reminders of things from years ago. The struggle of looking at the past can sometimes be a slap in the face compared to a walk down memory lane.

How did I not realize something was wrong sooner? Or there is a photo he’s holding a crayon and not eating it. So why can’t he do that now? And the pain of watching videos of my daughter outpacing her brother is a different form of guilt and shame I try to protect myself from by not looking back.

My son used to go to the pantry, grab a snack, we would eat it, and then he could take the wrapper to the trash. I would say, “throw that in the garbage!” His cute little pitter-patter would run over with excitement, and he would throw it away. I regret that I never made a video of that. Or how he used to complete puzzles. Or how he used to sign to me during his meal times. I didn’t think those were the highs.

I live in the moment, and I try to remind myself it’s okay.

The reality of photos is there are so many memories, good and bad that I don’t have the strength to make the right choice to take, look at, or post. I love my children, and of course, I think they are the most beautiful things, but the uncomfortable truth is that my son makes people uncomfortable. My son can even make me uncomfortable. How horrible that feels to say. And the cycle of sadness, frustration, and self-pity makes me feel like I’m failing as a mom, and maybe as a person.

That divide between remembering the memories I didn’t capture, the guilt with that, and trying to be present and record memories for the future is frustrating.

So I push through. I take the photos. I try to look back at memories – something I couldn’t do years ago. And when it all becomes too much, I stop. I live in the moment, and I try to remind myself it’s okay. I’m doing the best I can, and that’s what this person can do.

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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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