Regardless of my son, Caleb’s age, he is stuck forever in time as a five-year-old. As a result, there will never be a day, as long as we’re both alive, where I don’t need to take care of him. Much like a five-year-old, there are skills he can do independently but others he simply can’t because he lacks maturity. For example, he can never be left alone by himself. We still need to find someone to watch him if my husband and I go out.
My parenting hasn’t changed much for him since he was little. Actually, nothing in our relationship has changed. I still take care of him the same way I’ve always taken care of him. This makes me a parent stuck in time raising my forever child – even though he is only an inch shorter than me.
Being my forever child was not a future anyone envisioned when we thought about Caleb growing up. We knew all about the responsibilities and the work involved with having a child with a disability. We were also adequately informed about all the heartaches and the problems we would face, we were more than sufficiently educated on that. But no one talked about the other side of that coin. What does it mean to have a child who essentially never grows up? Well, I’ll tell you.
My forever child
Do you know Caleb’s face still lights up every time he sees me? It’s for no other reason than I’m his mama. I will always be his mama. When I walk through the door after being gone, he hugs me and tells me he misses me. Just like he used to do when he was little. I’m still his favorite person…or a close second anyway.
Do you know he walks around the house in a Superman cape because he believes he’s Superman? He’s not pretending to be Superman. He is Superman.
The magic and wonder of childhood still exist in him. The world continues to be an exciting place. And even if he’s seen the same thing a billion times, he still experiences it through fresh eyes like it’s the first time. Nothing gets old with him. For example, no matter how many trucks he sees on the road, the next one he sees is just as exciting as the one he saw a few seconds ago. He gets a thrill out of seeing every single truck.
He’s also very teachable and willing to learn. He’s open to discovery and nothing is beyond the scope of his interest. It’s one trait I absolutely love about him.
Disappointments, failures, and heartaches last only a minute before they flitter away, leaving innocence intact. As for regrets, he has none. Every day he wakes up excited to be alive and live each day to the fullest. He’s always proud of himself and his accomplishments. And even though he has reasons to complain, he never does. He just picks himself up and starts all over again. His zest for life is very much the same as it always has been. He amazes me and every day I thank God he’s my son.
How he impacts my life
He keeps me young and fills my heart with so much love and joy. He teaches me patience and makes me see beauty everywhere. He has taught me the meaning of compassion, grace and resilience. And yes, I will always have to take care of him for as long as we are both living. But that’s such a small sacrifice to make for how much he’s poured into my life, this forever child of mine.
That’s the side of having a child with a disability no one told us about. It’s a side you’d only know if you’ve been touched by such extraordinary lives. I am beyond thankful to God for my forever child.
Every time I think of you, I give thanks to my God. Phil 1:3 NLT