The Waiting Game

Waiting. We all hate it. Flipping through that germ-covered People from 2009, when Brad Pitt and Angelina Jolie were still an item. Playing Candy Crush until you run out of lives and have 13 minutes until the next one. Staring at the home menu of a Bambi DVD on the television screen because someone forgot to press play.

But, that’s what we had to do…FOR SIX WEEKS!

We called a few days after our appointment for the results of our CK blood test – it was 12,000. The nurse says, we just don’t know yet so don’t let this ruin your day. We need to wait on genetic tests to come back before we are sure. Are you f***ing kidding me? Let’s just say my day was officially ruined.

It was hard to move on with normal life.

Mom came. I wasn’t in a good space. I wasn’t eating. I sure as hell wasn’t sleeping. I smelled, I’m not going to lie. I said, “I can’t do this. I won’t do this. I want to preserve my family in my memory this way.” I’m not even sure what I meant, but I certainly freaked everyone out with my words and thoughts. Having a severe anxiety disorder that I was trying to manage through exercise and meditation (I know that’s so silly of me), my world spiraled out of control and I slipped into a dark space. I couldn’t even look at Liam without crying. My beautiful boy who just didn’t understand. My other kids having to lean on Collin for support.

Get professional help if you need it.

Everyone tried to help me. Tried to say the right things. But, there are not right words for this. The only true solace I found was in the words of parents who had been here, where I am at right now. My family wanted me to not think the worst, but I knew what our results would be, and I knew what we were facing. They wanted to remind me that this is happening to the whole family, not just me, but I didn’t care. They wanted to find common ground by discussing their own traumas and how they got through it. That just made me angry. They couldn’t begin to understand THIS. I was angry at them, angry at God, angry at all those parents with healthy 6-year-olds. It also made me sad – deeply sad. This was a sad I’d never known in my whole life – a deep, painful sad that you feel to your core, that makes your bones aches. A sad that frightened me.

And, my family pushed me to get help.  I immediately received meds to help me eat and sleep, and once I began to human again, I started to see just a tiny bit of sun through the dark clouds. Sometimes faith and prayer isn’t enough – sometimes you need to consult a doctor. Don’t stop those prayers, but get the advice of a professional, too, if you need it. My family stuck through with me, even when I was horrible to them, even when I pulled them into my darkness. Maybe they can’t say the right thing, but just being there is enough.

It’s okay to break.

Everyone talks about strength. People tell you that you’re strong enough to handle this or it wouldn’t happen to you. They remind you that you have to be strong for your family. But I’m here giving you permission to break no matter what’s going on in your life, just as long as you come back and put the pieces back together. This isn’t a Today Show segment – this is your life. You’re allowed to have real, raw human emotions. You’re allowed to admit when you don’t feel strong. You’re allowed to be mad. You’re allowed to be sad. And you’re allowed not to feel guilty for breaking. Don’t let others make you feel guilty for phasing through your process of grief. Please, just get help if you need it.

Faith and believing in miracles.

My therapist said that there is no reason, no greater plan, that this is just chromosomes that caused this. But, I want to believe there is some higher power who’s overseeing this thing. I want to believe in prayer and faith. I want to still believe in the miracle, in the cure.

The Results

They came six agonizing weeks later, over the phone on our last day of our epic Spring Break family vacation.
Liam has Duchenne Muscular Dystrophy. The nurse gave results over the phone and even said something about starting steroids right away, and I heard she got in trouble for that. This was not a conversation for the phone. But it helped prepare me for diagnosis day and next steps.