Like breathing

I’ve been told that 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.

I was at a birthday party and a party go-er 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 that was extremely touching that I will 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 perfectly sums up why leaving our son is difficult. The man observing me told his daughter that caring for Christopher 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. 😉 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 “let go” very often. For the last (almost) three years I have been his everything. I know him like no other. I have been deciphering his cries, reading his expressions, and making decisions based off of intuition and instinct. I am his mind reader and voice. Yes, it’s exhausting. Yes, I could “let go” a little. Yes, there are others who are capable of caring for him but they aren’t that. They aren’t everything.

I know him but what you also need to understand is he knows me too. He knows that I will come to him when he needs it. He knows that I will figure out what his face is telling me. He knows that I will hear his cry when no one else can. 121120-life-is-not-measured-by-the-nu-vs12He knows that no matter what we are 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 completely hard to understand.

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


Not broken

An old friend of mine would occasionally call her child with medical complexities “broken.” I would smile and go along with her but it always bothered me and I couldn’t pinpoint why. I do understand the need to have humor in our lives. I understand that people all cope differently under stress and unusual circumstances. Believe me, our lives need laughter. But I kept thinking of what she said and thought that if she thinks her son is broken she most definitely thinks mine is too.

Our son has a rare genetic condition, congenital disorder of glycosylation (PMM2-CDG). From his head to his toes, he’s affected by his disorder. The list is long and his needs are great, but I would never call him broken. He may be imperfectly perfect, but not broken.

To me, broken things are tossed aside. Broken things are given away in a pile full of unwanted clothes and household goods. Broken things are thrown in the garbage so new, working things can replace them. Broken things are unwanted. At first the idea that broken items are not kept is why I felt her comment never settled quite well with me, but when I quickly googled the definition of broken this is what caught my eye.

“(of a person) having given up all hope; despairing.”

Now this. This is what really struck me. “Given up all hope.” Not a chance. No way. You will never see him give up. I watch him struggle daily to sit and to grasp a toy on the first try, but one thing I never see is him give up. Of course he gets frustrated and cries, occasionally through his entire hour of physical therapy, but he perseveres. He tries harder than anyone I know. When I look into his eyes I see hope. He radiates love and joy. There is definitely no despair in him.

Yes, his body doesn’t function like it should and there is absolutely no “fixing” it. We don’t know if he’ll walk or talk but a great friend once told me that “we won’t know unless we try.” And try we do. We try and we hope.

My sweet boy with the greatest hair and dashing smile is most definitely not broken.