Hellobee

D was diagnosed with cerebral palsy almost one year ago this month. March is CP awareness month (not to be confused with World CP day in October, which celebrates technological innovations), and to celebrate the occasion I wrote a letter to myself — specifically, what I wish I knew a year ago when I discovered the diagnosis. Discovered is an intentional word choice — D’s neurologist didn’t tell me the diagnosis; she actually just put it on his paperwork which I later found at home when filing it away. This put me in a terrible position of ignorance and fear and worry! I remember that awful feeling well, and wish I could go back in time and give myself a big hug.

Dear past me,

Wow – that is some scary news! Cerebral palsy is NO JOKE. It is not fair that D has to deal with this on top of everything else. Cry, complain, vent, but then you have to pick up the pieces of your life and keep going. You don’t know this yet but D’s CP diagnosis now falls on the very mild side of a very wide spectrum.

D is growing into such an awesome little boy. You can already see some of his personality now (he’s always been curious and tough as nails, since the day he was born) but it just keeps getting better and better. He is SO determined! Nothing and no one slows him down.

The PT that you just agreed to do with him (even before you knew the CP diagnosis) is going to help him so much. At 18m now he doesn’t have any gross motor delays–truly spectacular given the weaknesses highlighted at that appointment. The worries you have about his arm, his leg, his ankles, and his back will all just float away as he grows more and more capable. This time next year he’ll be walking (walking!) to the pantry, pointing (pointing!) to Goldfish, and asking you for a cracker! The early intervention OT that you are about to meet is a wonderful, talented woman that helps him to pass his first swallow study. You’ll only see the neurologist one more time, when she’ll declare him to be in too good shape to continue following up with her. The broviac comes out, the weekly GI clinic visits drop off, and life improves for all of you in so many ways.

I know you’re afraid that the worst is yet to come, but I promise, it’s behind you. I don’t know what the future holds, but this year has been so great! Even the frustrating parts remind me how lucky we are to even HAVE silly things to worry about. Things like, D never stays still for a diaper change. He’s a big fan of pulling hair. Every morning he makes it his mission to disassemble his feeding tube bag and backpack set up so we all wake up to the pump beeping. He gets into so much more trouble than K ever did, and finds a way past every baby proofing effort. He continuously uses the toddler table and chair set as his own ladder to reach things on the counter. He is trouble with a capital T. He has doctor’s appointments that take ALL DAY – but then, we go home.  And we’re all together, and mostly healthy, and totally happy.

The future is awesome, you just have to get there!

Lots of love,

Future you.