Chronically Ill

The fact that my child is chronically ill isn't something that I think about a lot.

I think about how to keep him healthy. I think about washing his hands and making sure every vehicle is stocked with sanitizer. I think about making sure we have his infusion meds stocked. I think about his temperature. I pay excruciatingly close attention to his behavior. I'm on alert for any migraine "tells" and a thousand other things but that's just how we live. We live our lives on high alert.

Then, there are times like now.

Now I feel like "chronically ill" is an appropriate moniker.

Most of the time Rainbow lives his life fairly normally. He plays and reads books and goes to the park. Since stabilizing on IgG infusions he even goes to the children's museum. Most of the time the fact that he can't go to pre-school or be around his cousins if they are sick and keeps us all vigilant about sanitization just feels like life. Most of the time it isn't obvious that he is sick.

Then, there are times like now when its obvious he isn't a normal kid, when he fights rolling migraines for two solid days and new symptoms are appearing for which his team has no explanation. Days like today when, despite our fears regarding the list of medications his little body must filter, we can't take even a short break from the meds or he devolves into systemic pain.

Despite all that, because his body doesn't make a key component of his immune system, we have to infuse today.

My child is chronically ill...

I think it's weird how people will try to take that away from us. Much like the way people try to white-wash grief, we are supposed to act like its all ok, we are supposed to say everything will be ok, we are supposed to be strong, "focus on the positive," and only acknowledge those rare cases of people who live "perfectly normal lives."

My son is three, he has endured 76 needle sticks (that actually got documented), 26 nights in the hospital, a lumbar puncture, 17 X-rays/CTs/MRIs, 10 (and counting) infusions, and 56 other various procedures. He has been up in the wee hours of the last two mornings crying because his head and body hurt so badly.

I'm so tired of the cultural expectation that we all act as if our struggles are minor. I'm tired of people's impatience with the suffering of others. In the end, it's entirely selfish.

My grief makes people uncomfortable. Rainbow's illness makes people uncomfortable. Maybe it would be better for our world if we were all a bit more willing to be uncomfortable?

If it isn't obvious by now I'm not in a particularly good place. I'm tired, so damn tired and, on the whole, if you're reading this you've accepted our struggle into your life. For that, I am immensely grateful, more than you will ever know.

Until next time...