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The 22q Coalition

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Guest post by Kylie Merriam

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 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 patient for every delay, and we will pray, and you,

        You will not win.

Guest Blogger Photo: 

Kylie Merriam is a 24-year-old wife and stay-at-home mom of
     Zachary (4y), Aedyn, (2y), and Judah (4m). She lives in
     California and spends her days visiting Judah at UCSF, where he's
     been since birth. She enjoys homeschooling, running, crafts,
     reading, and raising awareness for 22q11.2-deletion syndrome.

What We Do