*In a whisper* “Meet me under the slide. I call a club meeting.” Or since we’re “well adjusted” adults maybe in the wine cellar. Code word for entry: diagnosis.
Welcome to the club. It’s not the kind of club that you seek an invitation to. It’s one that you become inducted into in a haze of sleepless sorrow, sometimes a low wail or high pitched keen. Despair never sounds the same when it emanates from different people. Words of a diagnosis or sometimes just the search for one is your orientation. But you’re part of our club now. The special needs parent club.
We all have different stories, different beginnings, middles and ends, but we weave enough similarities to bind us together. It doesn’t matter if your code word is autism, epilepsy, mitochondrial disorder, diabetes, developmental delay. We’re all still walking different paths of the same road, tripping along sticks and stones and broken hearts along the way.
And it’s ok if you balk. If you are in denial. If you’re not ready to be one of us. We weren’t ready either in the moment that we heard the words that would alter our lives. But we’ll sit next to you. We’ll tap out messages on a keyboard if you’re far away, or hold your hand if you break down at the park or over coffee. We’ll hand you a tissue and we’ll grieve together. We’ll share your tears and ours will taste of the same salty fear.
We’ll also bust out the Pom Poms and megaphones when you get good news or your child defies their limits. We’ll cry tears of joy for children we’ve never met because we’re so dang proud for them. For you. And we’ll look at our own children with renewed hope.
We’ll encourage you and remind you- You’re doing a good job Mama. You got this. Not only CAN you do this, you ARE doing this, and doing a dang good job.
No no. Of course you don’t think so. Of course you feel like you’re hanging on by a thread, or maybe you’ve let go. We all do. But you are doing so much more than you’re giving yourself credit for.
So we are a club, one you don’t think you want to join until you realize, like the Holland poem that a million and one friends sent you, though this wasn’t your intended destination there are good people here. People who get it. (There are assholes here too. Being a SN parent doesn’t instantly make someone a good person. But hopefully they come around. Otherwise they’re relegated to a corner table at the back. Like Baby. We do put Baby in the corner.)
But. You’ll see, you’ll find a place here.
We’ve learned that the small things are never small. We’ve learned not to save things for a special occasion. We’ve learned that life is the special occasion and it is fragile and short and health can’t be taken for granted. Neither can words. We’ve learned to communicate without words. We’ve learned truly to love unconditionally. We’ve learned the value of life. We’ve learned how to not give up or to give up briefly but then get back up. We’ve seen the struggles of meltdowns and tube feeds and wheelchair shopping and insurance hell and dear God not that ER again and the best nurses on the floor and can the neuropsychologist really be booking 6 months out and I did CPR on my child and contentious IEP meetings and the constant feeling of defending your child’s worth and hell NO I don’t accept that this is good enough and the guilt of am I doing enough and oh no I double booked ABA and OT and I’m drowning in my to do list but I’m too damn sad to get off this couch to do any of it and no I haven’t showered in 3 days and someone order pizza for dinner again, yes I know we just had it last night and and and…
Welcome. It’s not all pain, it’s not all joy but whatever it is in this moment we are unequivocally here for you. In pajamas with unbrushed hair, but here.