Control

I’m going to admit something that isn’t particularly flattering.

I’m controlling. Especially with our youngest son.

I’m doing it all.

Please don’t roll your eyes or stop reading and think I’m turning my nose up in an I’m-better-than-you sort of way.

It is far from that.

Every morning I wake up and immediately care for him after a night of interrupted sleep. I’ve been up multiple times from the beep of his feeding pump and occasional need to be rocked at 3am. I get out of bed, lift him from his crib, and head to the kitchen to get his medications ready. We laugh and giggle as I carry him down the stairs. I kiss his neck and breathe his sweet scent in. Then I feel his skin and realize he feels a bit warm. Quickly I take his temperature and say a short prayer to the heavens to keep illness at bay. All I can think of is a recent Facebook post about another child with the same disorder who out of the blue became lethargic, seized, and then was intubated and in the hospital for days. I can’t help but recall his last 11 day hospitalization from a cold. I picture the sweet faces of CDG children that I came to love and lost over the years. Lately, all of this goes through my mind. Multiple times a day.

After taking his temperature, realizing it’s not a true fever, we are ready to head off to our usual therapy appointment. His temperature fluctuation is likely his body just being his body. We greet his therapist with a smile and tell her all about what we’ve been working on over the weekend and soon he’s off to “play” while I sneak into the observation room. While he’s in therapy I call a clinic about an insurance issue, leave a message for his social worker, and email about fundraising. I check a few things off of our list and in the process recall a few more items that need immediate attention.

The day goes on. I’m in control. I know what is happening, when it’s happening, and I’m making it happen. We hug and kiss too many times to count. There’s more therapy, more tears, and definitely more kisses.

Congenital disorder of glycosylation is extremely unpredictable. The unthinkable happens to our kids. Our son contracted a staph infection in his blood and his wound from a routine surgery when he was six months old. His surgeon said she went over and over his surgery in her mind because “that shouldn’t have happened.” But it did. It happened and the things that “don’t happen” DO. We know this. We’ve experienced this.

His disorder has no certainties. If there is anything that is certain it is that surprises lurk around every corner. I have zero control over what happens.

I am simply trying to hold onto any small spec of predictability. I am clinging to anything that I pray to God won’t all of a sudden turn into something it wasn’t. I am doing everything in my power to make sure my son is safe, healthy, and alive. I will do everything I possibly can to ensure he gets what he needs. I know it sounds dramatic, but it’s real. It’s my real life.

We live a life where the possibility of losing our child is very real. As much as I try to stuff it away, it never really leaves me. The reality is always there, haunting me.

I am controlling.

I am doing it all.

I’m not doing it all because I think I can. I’m not doing it all because my way is simply the best. To be honest, I’m doing it all because I’m terrified that if I stop and I lose him I will never forgive myself.

I will want it all back. I will want one more bedtime story. I will beg for him to wake me in the middle of the night for snuggles in the rocking chair. 3am, 4am, 5am, I will want those precious minutes back.  I will be shaking my fist at the heavens pleading for a few more kisses. I will crave the feeling of his soft warm skin on mine. I will want nothing more than to turn back time.

So, yes, I’m doing it all. Not because I can, but because my heart knows no other way.