My writing mind has been quiet for a long time. There are a good number of reasons why I have not placed myself in front of the computer every day. Part of me is hyper-focused on being in this moment. In five short months, Benjamin will graduate and he will fully transition into the world of adult disability services. I almost don’t want to attend his graduation. There’s no way I’m going to hold it together that day.
I have no idea what will come next. We’re signed up with an adult support coordination agency and I plan to lean on them heavily to steer us in the direction of continued daily, quality services.
So I will allow my mind to be quite about all the changes I’m not ready for because I don’t know how to explain it all to Benjamin. Explain that he won’t spend his days with Ms. Janet and all the lovely, young ladies in his classes who’ve fought for his attention for so many years. I don’t want to imagine him missing all the phenomenal therapists who’ve watched over him so carefully when I’m not there.
Benjamin, I am grateful that you have been so loved.
When I opened your door this morning, you were sleeping so peacefully. I put away the stuffed animal friends that surrounded you, took out your clothes, positioned your wheelchair, and set out your morning medications. You didn’t budge. I leaned in close to get a better look at your skin color and to listen and watch for your breathing.
I woke you with a whisper, “Happy Birthday Beauty Boy.”
I’ve had 21 years to love you, knowing another day was never guaranteed. Your daddy always said, “Ben’s not going anywhere.” I believe, deep in my heart, that you will be with us for a long time. But I know every parent in my lissencephaly support group wants to believe that. I’ve seen too many of them proven wrong. Their mourning is palpable.
Grandma asked me last night, “Where has the time gone?”
These past 21 years have flown, but they have been hard fought.
You are worth every ounce of fight I have ever exerted.
Actually, that’s not quite right.
You are worth so much more.
I love you.
I’ve always loved you.
Any grief I’ve had isn’t a reflection of who you are.
It’s always been based on my fear of how the world would perceive and treat you.
A fear of knowing I can’t make this world accessible enough.
But I will die trying to keep your corner of the world safe and filled with people who are willing to do the same.
Happy 21st birthday my Beauty Boy.
Thank you for being you.