Smiley Riley, pt 2
Stories from the sand
It has now been a little over three months since Riley’s diagnosis. I wish I could say that I’ve been dealing with all of the confusion & stress & sadness gracefully. I wish I could say that I haven't started having panic attacks again. Anxiety is a tricky SOB. So is grief. & guilt. But I will say that I really am trying to allow myself to feel all the feelings. Even when I feel bad for feeling bad, I try to tell myself: your feelings are valid. They are real. And they are strong. But they are not stronger than you.
Some days, that works like a charm. Other days, I cry so hard in the Starbucks drive thru line, the barista literally can't understand my order until I pull around to the window. All the while, Riley was napping peacefully in the backseat after a particularly long appointment, probably dreaming of applesauce pouches & bubbles & Mickey Mouse Clubhouse.
Over the past few months, we have begun to navigate this new world of Riley´s together, despite my occasional mental breakdowns in parking lots & it has been challenging. After his initial diagnosis, we were handed an aggressively large stack of paperwork & referred for evaluations at several pediatric therapy clinics. I spent hour after hour the first few weeks combing through applications & insurance questionnaires & disability findings while we waited on wait lists for evaluation appointments to open up.
When we were able to get some evaluations scheduled, I felt relieved, like we were finally going to start making progress towards getting him the support he needs. And we are. But it's slow progress, like walking up a steep hill of sand. After every evaluation, they share his scores & their thoughts - all concluding, ¨Yes, we really think he needs this therapy” & then we are put on another wait list for a therapy appointment slot time to open up, which is estimated to be another 4-6 months. At the end of every evaluation, they also offer me a parting gift: even more aggressively large stacks of neon colored papers - resources & support groups & activities to try at home.
At this point, all the papers are filled out. The records have all been scanned and faxed. We have gotten some approvals so that it will be easier to afford some of his therapies when we are able to get in. We are working with him at home, using a color coded calendar taped to our fridge to rotate between speech, social and sensory practice.
Like I said, it all kinda feels like slow moves in sand. Waiting is hard. The waiting rooms, the waiting lists, the waiting to see, the what ifs. Parenting, especially the last few months, has felt really overwhelming; relentless even. But here is what I also know to be true… the type of love I have for that boy, this deep fierce protective primal shit, it is also unrelenting.
This shit is tough. But I am too.
So is he.
He is magic, all belly laughs & big blue eyes & sticky kisses & love tackle hugs. & wow, how lucky am I to be that boy´s mama?
And now because this was a little depressing & emotional, I would like to give you my current favorite picture of Ry that is my screensaver on my phone.
My face when someone says that we are on ANOTHER wait list:
