Today is your 13th birthday, but the story of you started years before that.
It was just me and dad and Lexi. We were happy but something was missing. Lexi and I especially thought so. We convinced Dad too, that we needed a baby, that we needed you.
13 years ago you were born at 10:03 pm. You weighed 10lbs 3oz and were 23 1/2 inches long. Just as we were laughing with you last night, I’m don’t know how you ever fit in my belly the last month. The nurse at the hospital that day thought you might have broken the record for longest baby born at Mary Lanning.
I should have known then that you would always be the one to break the mold.
You are brave and funny and interesting and wonderful, but life for you is not without struggles. Living with Duchenne is a challenge, but you do it with strength and humor and love.
The list of things that Duchenne limits for you seems endless and yet, you’ve tried everything you wanted to. The fact that you love the stage so much and can share yourself so freely is greater than anything I could have dreamed for you. I smile every time I see you perform, especially for the private performance those of us lucky enough to be your friends and family get to see at home or out to eat or at a ballgame!
I remember a day during the summer you were 4. We had just spent the day in Omaha where you were diagnosed. After travel and tests and all else we endured that day you were exhausted. You slept the entire drive home and continued to sleep throughout the evening. For what seemed like hours I held you as you slept and I wept.
That day, I was told that boys with Duchenne stop walking at age 12. We both know that not walking will not be the end of the world, just a change in ours; but today you turned 13 and you are still walking. The expectations that specialist put on you so many years ago, never defined you. You have always had the gift to just be you. You are the truest person I know.
We are doing things that have never been done before. You and I both know nothing we try is guaranteed to help, but you try anyways. You also blaze a trail for your younger brothers. You are braver than you will ever know. Sometimes I’m scared and you are the one whose lead I follow.
And son, I’ve never seen a middle school boy be embraced so warmly by teachers and peers and friends. There is magic about you. Your smile, your laugh, your wicked since of humor. People can’t help but love you.
But on this day, your 13th Birthday, know that their isn’t a soul that loves you more than I do.
Happiest Day to you, my beautiful boy!