When Leaving My Medically Fragile Son Is Difficult

As a mom of a very young medically fragile child, I have a hard time kissing his face and leaving for the night. I know it would be good for me, and I’m positive it will be fun. I’ve been told numerous times I need to get out more often or that I need to do things for myself. Alone. Friends tell me to “let go” a little. They tell me not to worry and that my little guy will be fine without me for a night. I realize all of this, but to tell you the truth, this is extremely hard for me. Is it hard for you, too?

I was at a birthday party and a man observed me caring for our son over the course of the party. We didn’t do anything special. I played with him on the floor, I snuggled him, I fed him — all the usual things I always do. After the party, I was told something extremely touching I’ll never forget. I kept this comment hidden in my heart for quite awhile. I tucked it away and wanted it all to myself. It moves me to tears when I say it aloud and I feel it perfectly sums up why leaving our son is difficult. The man observing me told his daughter that caring for my son is “like breathing” to me. Like breathing. It’s automatic. Natural. A part of my very existence.

I could never pinpoint exactly why I don’t particularly like to leave him. Yes, I’ll admit I’m a bit controlling. Yes, I like to make sure I know exactly what’s going on with his care. I could also give you all of the “usual” scenarios that go through my mind when I make the decision to leave. But those words from a stranger are the only way I can describe why I don’t choose to put someone else in charge and don’t “let go” very often.

I know him like no other. For almost three years, I have been deciphering his cries, reading his expressions and making decisions based off of intuition and instinct. Yes, it can be exhausting. Yes, I could “let go” a little. Yes, there may be others who are capable of caring for him — but they aren’t that.

I know him, but what you also need to understand is he knows me, too. He knows I will come to him when he needs it. He knows that no matter what, we’re in this together. When I leave him, I am leaving part of me. A part of me that is fragile. A part of me that is complicated. A part of me that is hard to understand.

It won’t always be like this. I think. I hope. I know the comments telling me to “enjoy myself” and “stop worrying, he’ll be fine” are well-meaning. I’ll try. I’ll get better at taking a deep breath and doing more for me, but right now I’m caring for the best parts of me.

Follow this journey on Team Christopher S.

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