People often ask me how I keep going. They ask me how I can smile and laugh. They wonder how I can possibly make plans for the future and count on better days and moments ahead in the face of so much grief.
Some days it is harder than others. Some days I realize I am waiting for three calls from two different facilities for two different kids and it becomes overwhelming. The best way I can explain all of this rare disease parenting is just shy of unbearable. It really is. My life really is.
On those days, I often bounce back and forth between shock, helplessness, and anger.
Shock is easy. That’s the easiest one for me to deal with. In the sense that I don’t actually have to deal with it. It’s easy to ignore and go about my business. I spend a lot of time in shock. I literally have a hard time believing this is my life. That my children have to live this way. That we will always be worrying in some way about them and their health. Absolute shock.
Helplessness is excruciating. The helplessness rare parents feel is just crushing. It will bring me to my knees in despair in just moments. It makes me feel like my soul weighs about 800lbs. I feel as if I can’t quite catch my breath and I worry about things I won’t even allow myself to think in my mind, let alone say out loud or type out here for anyone to see. The helplessness is real, y’all. When others tell us they don’t know how we do it, we have no answers. No words of wisdom. In truth, we don’t know exactly HOW we do it. We just do it.
Anger. Oh, anger. Anger is another hard one. It feels slightly better than helplessness as anger often feels more productive. Blaming someone or something is better than the constant questioning of helplessness, isn’t it?
But in its’ own way, anger is a feeling with nowhere to go when you’re a rare mom (or dad). Where do you direct that anger? Where do you put those feelings? On disease? On medicine? On God? Where?
Sometimes my anger is directed on all of those places, and then some.
But really, what good is that? What good is it really, to be angry about your child’s diagnosis? Even if there were someone to “blame” (and there almost never is) what good would that do? What would that solve? Would it absolve you of your shock and helplessness? Nope. Would it somehow make the helplessness any less heavy? Also, nope.
Being angry about these things is like being mad at the wind. Sure, you can be annoyed that your hair is getting caught in your lip gloss as you walk to your car, but so what? Does the wind suddenly apologize and sit down? Nope.
Being mad at rare diseases is necessary for brief moments. Anger can be a powerful motivator. But in the long run, it’s not all that helpful.
In the long run, being angry will rob you of the joy in your day-to-day moments with your rare kiddo. And make no mistake, there is joy to be found in those moments. Plenty of it.
There is joy in people, in bonding, in grief, all of it. We have found plenty of joy in our journey.
The way I see it, we have two choices in this rare parenting life. We can view this as a season of grief with moments of joy or a season of joy with moments of grief. Your view will probably change regularly. But as long as you are able to find joy in your life with your rare kid, you’re winning. Even if it doesn’t feel like it.
Rare parents need a bit of anger from time to time. It replenishes our resolve to keep fighting for our kids. Just remember that being mad about life will drag you down if you sit in it for too long. So get up and find some joy when you can. Don’t rush it, but don’t put it off for too long either.
I mean really, what good is it to be mad at the wind anyway?