Future Vs Now: Our Vision for Charlie

Jamie Sumner
Special needs mom and author
07/12/23  9:48 AM PST
young disabled boy in his wheelchair looking out at his yard with a smile. looking toward the future with a child with disabilities

The Fine Balance of Looking Toward the Future and Living in the Moment

Late one Saturday night as I was rearranging bicycles and boxes and rakes yet again in the garage so the doors wouldn’t freak out and refuse to close, my husband held his phone under my nose and said, “Look at this one.”

It was the picture of our perfect house. It was not far from where we live now, but in a neighborhood next to the river with older trees that connoted the kind of “happy little trees” Bob Ross was always going on about. Everything about this place screamed “happy.” It soothed me to scroll through the slides of the huge master bedroom, the wood-burning fireplace, the blue-tiled kitchen, and most importantly the downstairs bedroom perfect for our son, Charlie, who needs to be on the first floor for wheelchair-access. I could have cried for how perfect this place was for us, and then I saw the price and did cry. One million dollars. One million dollars. That number broke my brain. While some people blink right past that, we are not those people.

“Why are you trying to ruin me?” I asked to my husband, who had also not yet seen the price and so therefore was ruined right back when I showed him. But guess what we did the next day? We went to the open house. It was better than we imagined, which made it so much worse. It smelled like freshly laundered summer in a bottle and had a private path lined with smooth stones that led to the river.

We left the realtor’s card on our van’s dashboard and returned home stare at all the things we now could not stand about our current situation, which was perfectly tolerable less than twenty-four hours before.

I do have that house to thank, however, for the current remodel of our house. We are building a giant screened-in porch off the back with a foundation meant to handle an upstairs master bedroom if/when we move Charlie to our bedroom downstairs. It isn’t the million dollar home of our dreams, but it is the upgrade that will stop us feeling itchy in our own home.

I’d be lying if I told you the conversations that led to this remodel were painless. Spending this much money forced us to talk about our vision for Charlie, not just in the next year, but the next decade and the one after that. Based on his needs, Charlie will most likely live with us forever, and I am a-okay with that. He’s my eldest son, my mini me, my boy who charms with a grin and flirts with the best of them. But…I will not always be able to lift him. We will need more medical equipment to assist with that. We will need to have funds saved to send him to the wonderful facility near us that runs a life-long learning program for adults with special needs for when he graduates high school. We very well might need a home nurse. That’s a lot to consider for the future as he watches YouTube videos on his iPad.

Would it have been nice to hop right on into that million dollar home and live happily ever after? Sure. But the future is fuzzy. Those people who had the perfect home? They are moving to Colorado because they wanted to be closer to family. The perfect home doesn’t make the perfect life. You can’t predict what will make you happy, just like you can’t predict what the people around you will need for themselves and from you down the road. The best you can do is squint at the future and make a guess. Then you commit to living in the moment and let yourself be satisfied with your own version of “happy little trees.”


child with special needs
Jamie Sumner is a special needs mom and author.

Author of the middle-grade novels:















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