smiling young boy in wheelchair and wearing hat that says "Life is Good"

It’s been a rough start to 2022, for sure. COVID. Natural disasters and crazy cold weather all over the country. Losing Betty White and Sidney Poitier. Enough already!

On top of that, we have a stomach bug in the house. Ugh. It’s bad enough for a typical kid; imagine what it’s like for a boy who is nonverbal, fed with a gtube, dependent on a wheelchair for mobility, at times incontinent…actually, don’t imagine it, just take my word for it, it’s gross. Thankfully the kid is content sitting on his adaptive toileting/shower chair and watching movies on his iPad for indefinite amounts of time.

What’s my week been like as his mom? Stocking up on Pedialyte, cancelling appointments, endless loads of laundry…you get it. But we do what we gotta do.

Why? Because we love them, so we don’t think about it, we just do it. We are certainly allowed to complain from time to time, and hopefully we can laugh about it more than not, but either way, we do it.

Good days and crappy days. That’s true life. The best way to get through these days is to embrace them, all of them. Our kids are precious, and if we could freeze their truest moments, we would. The moments when they are content, being themselves, doing their thing, authentically and unapologetically. And we can, with a photograph.

A photograph is a gift, one I love to share with my clients and feel privileged to do so. An image that reflects the true nature and soul of an individual is so much more meaningful than a stiff pose and a fake smile. Kudos to my son’s teachers- I have to admit, they get the very best photos of him, because they are his people, and school is his happy place. And of course, they are not his mom!

This nasty stomach bug brings me back to when our son was born, and we were unexpectedly detoured. His first diagnosis, of many, was diabetes insipidus, which presents a problem with the body regulating sodium and water levels. Too much or too little of either can be very dangerous. Today I am stressing over how much food plus Pedialyte to give him, wanting to make sure he gets enough nutrition and still being mindful of his electrolytes. His doctor wants me to bring him in for labs but I don’t even want to get him out of the house yet…he is either sleeping or in the bathroom, or both!

Disruptions like this happens a lot with parents of children with disabilities. We are en route to a very reasonably expected destination and boom, we hit a roadblock, and there are non clear signs for a detour. Trial and error it is, my friends. Our significant and exciting moments often differ greatly from those of our friends. Our son doesn’t hit typical “milestones,” but he has his own moments, his own wins. He doesn’t look at the camera, but he knows you are there, and you can see that awareness in his smirk. His classmate is not able to sit up on her own, but she is excited about her new wheelchair, and you can see that in the way she dances around in it.

We treasure these things that make our kids who they are.

These captured moments are the reward for all that we do as parents of kids with special needs. If I can offer this reward to families whose lives took an unexpected detour, like ours did, then I have done my job. If I can create a beautiful, realistic image of your loved one who might be disabled or a challenge to photograph, and that makes you, a special needs parent or sibling or friend, smile, then I’ve succeeded.

Everyone deserves a beautiful portrait of their special people.


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