Hello My Love,
You are thirteen! A teen! Oh how much I have wanted you to grow to this age and also how much I have wanted to hold you tight to me in all the smaller versions of yourself so I could keep you safe and close and protected.
To be honest, I worried over all the first years of your life. You were born so early with so many complications. The NICU was more your nursery than the room in our home that I had painted teal the color of a shallow ocean. When you did come home, you came home with a tracheotomy and oxygen and later we got you that feeding tube you so desperately needed. I needed it too, so we could cuddle instead of fight to get you nourished during meals. I still think about it when I tell your little brother and sister not to argue at the dinner table. Meal time is sacred and always will be, thanks to you.
Your official diagnosis of cerebral palsy at age one felt like a gut punch to your future but ended up opening so many doors for therapies and equipment. The first time you walked was in a swimming pool during aquatic therapy. Your horse in hippotherapy was named Dumpling. Your helmet was the same teal color as your bedroom walls. Your first wheelchair was glittery purple. Your first standard had bright orange pads. We like a lot of color in our family.
When you left your special needs preschool for public kindergarten, I put on a smile but shook like tissue paper in the breeze as the bus carried you away from me in your purple wheelchair. You loved school. You still do. It was the best thing to do, to let you go. I am saying that like a mantra now as the days tick closer to the big shift from pre-teen to teen.
Middle school was the next giant leap. You chose band as your elective and thoroughly enjoyed bossing the rest of the class around on your speaking device as you conducted. Now you smell like Old Spice deodorant and when I kiss you in the morning there is the faintest trace of wispy stubble on your chin. Your eyelashes are dark and still longer than mine and when they flutter open, I thank the universe for giving you to me.
Being a teenager is rough. I remember. It is full of emotions that will make you feel like you are holding tight in an unsteady hammock. But this, my love, is what I need you to remember:
You are exactly who you need to be. You use a wheelchair and a speaking device and you must never let anyone make you feel less than for that. As you do more things on your own, I can’t always protect you as I once did. But I have faith that you will stand up for yourself as much as I would. You are tough like me. You are my son. We are linked forever, kiddo, and I am so glad you are awesomely stubborn. I won’t be much good at teaching you how to shave, but you better believe I will teach you how to be your own person. Remember what I always say, “You do you, kid.”
Happy thirteenth birthday, my boy,
Love,
Mom
Jamie Sumner is a special needs mom and author.
Jamie-Sumner.com
Author of the middle-grade novels:
