A Letter to My Amazing Son Jonah on His 12th Birthday

Dear Jonah,

When you were born with epidermolysis bullosa, they told us there was an 85% chance you wouldn’t make it to your first birthday. But this past Saturday you turned 12. Twelve years old. There is a part of me that can’t believe you’ve made it this far. And there is another part of me that screams, “Of course he did! He’s freaking amazing!!” 

(Courtesy of Patrice Williams)

What do “they” know anyway? I said it back then and I still believe it today: God didn’t make you to fit into any kind of box. You are perfectly and wonderfully your own statistic, your own prognosis, your own outcome. 

The first two years of your life, I took pictures of you constantly. I captured every funny look, every smile, every moment. You playing with blocks on the floor? Got it. Sitting in the laundry basket? Check. Coloring on a paper plate in your highchair? Yup.

The manic picture-taking was partly because you were adorable, but partly because I kept in the back of my mind this horrible thought: “What if he never has the chance to do this — giggle on the changing table, rock in that chair, play on this riding toy — again?” I felt the need to capture every single image, because I thought at any moment I might lose you. And what if my memory wasn’t good enough to retain all the goodness of you?

(Courtesy of Patrice Williams)

Sometimes the thought of losing you crippled me. When you wouldn’t eat, had breathing issues, battled infection, or would be in so much pain from full-body wounds, I would wonder, “Is this it? Is this the beginning of the end?” But every day you literally fight for your life. You wake up and decide to be brave and battle through. Even when it’s not easy, you somehow get up, go to school, endure a bath and dressing change, and do it mostly with a smile on your face. 

You’re kicking butt in sixth grade and even plan to play baseball this spring. You are kind, compassionate, and a good friend. You have a mind for sports statistics like your dad, and an extroverted personality like me. You are the funniest kid and have such witty comebacks. Your teachers all say that you are a joy. They are right.

But nobody sees you like I do. Nobody knows you and feels your soul hurt like me. I can see the pain in your eyes before anyone else, and most of the time, I can anticipate your needs before you know them yourself. I have the honor of being there when you let your guard down and holding you in your weakness. I get the privilege of being your comfort. (Even though sometimes my comfort comes out as cheesy, annoying jokes, just to make you laugh.) It’s been you and me forever, kiddo.

Jonah visits his mom in the birthing room before being transferred to the local children’s hospital on February 27, 2009. (Courtesy of Patrice Williams)

I get the privilege of being your mom. Even when it’s hard and it hurts, I wouldn’t choose anyone else. From the moment you were born, I knew I’d spend my everything fighting for you. I thought I would be your healing, but in so many ways, you have been mine. Twelve years of loving you has been the most rewarding endeavor of my entire life. 

I’m always here. I’m here for the boo-boos and bandages. I’m here for the hard days. I’m even here for the middle school science homework. Whether you move out on your own at 18 or live with me until I’m 96, I’m all in. Our life might not look like everyone else’s, but it’s our life, and I’m so thankful for it. I’m so proud of you, Jonah. I’m so proud of us.

Jonah and his mom on his 12th birthday. (Courtesy of Patrice Williams)

And I am so incredibly thankful that God saw fit to make me your mom. His undeserved grace to me takes so many forms. You may be the most beautiful of all. 

I love you.

Mom

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Note: Epidermolysis Bullosa Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Epidermolysis Bullosa Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to epidermolysis bullosa.