A Letter to My Son Before His 11th Surgery

My son was born Treacher Collins syndrome, a genetic craniofacial syndrome he got from his birth mom. Yes, he is adopted; both of my kids are. He was born with no palate in his mouth, no ear canals, profound hearing loss and a complicated airway. We took custody of him eight days after he was born. His first major surgery was his trach at 3 weeks old, and it was then I started telling him that I wished I was a fairy Godmother and could pull my magic wand out of thin air to make everything OK, but I couldn’t find it.

He’s about to have his 11th surgery/procedure at almost 2 and a half years old, and we don’t know what it’s going to be for until the ear, nose and throat specialist (ENT) gets in there. It could be routine; it could be a few nights in the hospital. But the only minor surgery is the one you or your child isn’t having. So in response to that, here is a letter I wrote to my son:

Dearest Son,

I have looked everywhere and I cannot find my magic wand. I’m pretty sure I lost it on the car trip down to Florida to pick up your sister. So I had to leave a message for the surgery scheduler because I missed her call this morning and am waiting for her to call me back. She’s the one who came in last time and gave you a hug because she’d never met you but has scheduled everything we’ve had to send you back for in the last year.

I just want you to know that every procedure, every surgery, everything you’ve ever had to have done that has caused you pain and grief — even though it’s done for your own good, to save your life sometimes — breaks my heart and your daddy’s heart. I just show it more on the outside sometimes than he does.

Yesterday when the ENT came in and put his scope on, and you started signing “All done” and “Ready to go,” and the silent tears started coming because you realized we weren’t leaving — that I was not only going stay but hold you down — it was all I could do not to pick you up and run out the door with you and your sister. That’s why I was crying while I held you down. We have to do this. We do what we do for you because we have to. Trust me, it’s not because we want to.

And it’s not because we don’t love you the way you are. We do. We’ve loved you every way you’ve been. But if we said no to all the surgeries, you wouldn’t be where you are right now. Sitting, watching “Bubble Guppies” and eating crackers and yogurt. You wouldn’t be with us. You wouldn’t be lighting up the world around you with the joy and the happiness you bring to everyone. You wouldn’t be the little brother to your sister, and we would all miss you.

I don’t ever want you to think you have to change what you look like and who you are for anyone but yourself and the betterment of your health. Because we love you the way you are. We love that you talk with your hands, and we love that you swing your arms when you walk because it helps you keep your balance better. We love every bit of you.

Love,
Mommy