Why I Didn’t Leave My Son With Special Needs at Home on a Pool Day

Every day when I wake up, I go into my 19-month-old son’s room and say good morning to my sweet boy. I get the report from the nurse who took care of him overnight and into the morning. I then unhook his feeding tube and shut off the pump. I detach the sensor to his pulse ox and press the button to turn it off. Then to the ventilator. I take the circuit off of his trach tube and power down the machine.

Silence.

I look down at my precious son who gives me with the biggest smile. He knows it’s time. I scoop him up and walk out of his room. He is free of all tubes, wires, circuits and machines. I hold him tightly as I feel the weight of his limp body against mine.

My son has spinal muscular atrophy type 1 (SMA). It has taken away his muscles, his strength, the way he moves and the way he breathes and eats.

But we try to do everything as “normal” as possible. Recently, we had a goal to go swimming. We have a kiddie pool in our back yard set up for our 3-year-old daughter. She was so excited to hear her brother would be going swimming with her.

I did his breathing treatment as he woke up from his nap and prepared his medical stroller. We took his bath chair out to the pool, and I lathered him in sunscreen. With his trunks and sun hat on, he was ready to go.

When we reached the pool, I unhooked him from his medical equipment and turned off the machines. As I held him, I lowered him down into the water. He started crying. I tried to soothe him, but my voice didn’t offer enough comfort while I carefully clenched his delicate and wet body.

I moved him over to his bath chair. Something familiar to him. He still cried. Maybe the water was too cold for him. Maybe he was scared. This wasn’t his cozy warm bath that he loved.

Abort mission.

Out of the pool and back into his stroller. Hooked back up to his machines. His oxygen was fine and so was he once he was out of the water. I pushed him back into the house and got him dressed.

Then I cried. Not because he didn’t like the pool after all the preparation and effort that it took to get him there. But because a pool shouldn’t be so foreign to my little boy. He should be able to splash and play with his sister, who was let down again and didn’t understand why he didn’t want to stay in with her. My son, with his precious soul, is perfect. But my heart hurts when we learn of a new limitation because of his SMA.

About a week later, we were invited to go to a friend’s neighborhood community pool. We were reluctant to go. We had a day shift nurse with us on that day, so I contemplated leaving my son at home with her. But I knew that wouldn’t be fair. We always strive for him to be included. To leave him home would go against what we believe in.

We decided to give it another shot. We did the same preparations, but we were out of our comfort zone this time. It was hot and he was upset. He was overheating, which caused his oxygen level to drop. We needed to cool him down, and we just happened to be at the perfect place to do so. The kiddie pool was empty and whether I was ready or not, this was our moment to brave the pool again.

We moved his medical stroller over to the edge of the pool and unhooked his medical equipment. I stepped into the pool, which wasn’t more than a foot deep. As I lowered him into the water, I looked down at him and he gave me a smile. I held his body carefully to keep him afloat and saw his eyes light up. In the water, he can freely move without his atrophied muscles holding him back. Ever so slightly, he moved his little arms and legs as if this were the place he truly belonged. He was comfortable, no longer overheating in the sun. He was happy.

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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