“Mom, can I have a hug? Sometimes it feels hard that I have Prader-Willi syndrome.”
I want to hold on so tightly some days. I want to tell you how much you are loved and cared for and that I, too, wish I could hug away Prader-Willi syndrome from you.
I want to hold on so tightly some days.
Freeze you at the age you are.
Mature in some ways.
Not mature in some ways.
Sweet and inquisitive.
Concerned and compassionate.
I want to hold on so tightly some days. I want to yell at your hands and muscles and motor planning that doesn’t always work for you the way they need to work.
It frustrates you. It frustrates me.
I will just do it for you. Again.
I want to hold on so tightly some days.
Pretend that adulthood is NOT around the corner.
Pretend that you will NOT be out of the school district’s protective shelter someday.
And hold hope that whatever your 8-3 pm schedule someday looks like that you are happy and eager to participate.
I want to hold on so tightly some days.
Just look you in your big blue yes and tell you it’s all going to be ok.
That your dad and I will live healthy and strong forever and take care of you forever. Do not fear.
I want to hold on so tightly some days.
And not let anyone or anything hurt you or make you anxious or change your schedule or alter the things you look forward to.
I want to hold on so tightly some days.
And just soak in your joy, listening to your 90s CD player, blissfully in another world. Unbothered by chores, the “shoulds,” demands, deadlines, to do lists, social media or the fear of missing out.
I want to hold on so tightly some days.
Because I love you so much I could explode.
Jan says
Beautiful
Rhonda says
I’m melting…. So much love in this!❤️
Thank you for always being open to sharing your stories. Sometimes it just sets things right just when I need it.
Love your heart, Jessica!