The 22q Coalition

There’s a secret language in this world. You won’t find it in any course catalog, and rightly so, as it requires no instructor to become proficient. You speak it with your eyes and your smiles, and there are a select few that can understand it.

Those few are parents.

Parents of the sick, the defective, and the broken… Parents that roam the halls of hospitals across the nation… Parents who are hurting, yet hopeful. Beaten, yet brave.

I am one of these parents.

We walk past each other every day. We share a “hello” sometimes, but more often just a glance. I try to give a smile to each one of you I pass. No matter who you are, or what your child may be going through, there’s always a return. Sometimes it’s a cry for help hidden behind a glare. Sometimes it’s a joyful smile of your own with eyes full of fear. There are numerous ways that we connect, but in each and every message that we send, there is one underlying thought that is conceived between us…

“I understand.”

I understand your concern and your questions. I understand your pain and your joy. I understand your faith and your hope and your love for your child. I understand your desire to trade places with your child. Whatever that may mean.

When I saw the invitation for a guest to share news, I thought, “What news have I to share with doctors or parents, that they don’t already know? What makes me so special?” And then it occurred to me. I know of this language that we parents all speak. I know of this bonding that happens between us with every pass in the waiting room, and with each and every “how’s your kid today?” I don’t know if our doctors, our nurses, or our surgeons see it or know about it. I don’t know if our children know of it, or our extended families, but we know it’s there. Our bond.

So is that my news? My information to share? Almost. The news of our bond? It’s news for you, 22q11.2-deletion syndrome. You cannot keep us down. When someone looks at my 4-month-old, Judah, just barely nine pounds, with a trach in his throat, a cleft in his face, a feeding tube in his nose, a scar on his neck and another down his chest, they pity him and they pity me. In those moments, it’s like you’ve won, 22q. I have news for you. My husband and I will fight. Judah will fight. We all will fight. We will seek new answers, we will reconstruct every deformity, we will exercise patience for every delay, and we will pray, and you, 22q…

You will not win.