It’s a Thursday night and the DSM-5 that I’ve been avoiding since Monday catches my eye from the hutch. I nonchalantly tell josh “we need to get this filled out for Caiden’s upcoming I.E.P. so we can get it back to the school”.
And then I do something I haven’t done since I pulled it from his Star Wars backpack Monday afternoon, I open it up. And as I skim over it the familiar words and phrases jump off the page at me “difficulty making friends”, “repetitive”, “avoids contact”, “prefers routine” and I’m taken back to before his diagnosis, when we sat down and filled out mountain after mountain of paperwork, knowing what it all meant but scared nonetheless.
And I’m reminded that this battle still rages on, it’s not a one time deal or a once a month deal, it’s a daily sometimes second by second struggle, and as the normalcy of the after school routine plays on around me, I tear up. Maybe it’s the exhaustion of the week catching up to me, or maybe it’s the permanence of it all that just occurred to me.
Whatever it is, I set the paper down before it consumes me and I get back to making dinner, to helping guide lunch packing, back to keeping the puppy from nibbling faces, to mediating the bickering, to catching smiles and loves, and to ground myself in this life that is mine.
Because today, I’ll be grateful for the battles we’ve won and the obstacles we’ve overcome, some seem small, like sharing and pooping in a toilet that isn’t ours, and some, some are monumental, like the fact that he said “I love you” to me, completely unprompted this year, words some parents wait a lifetime for and will never hear. And just last night he grabbed my hand as he fell asleep and I sat as still as could be as his little body gave way to sleep, scared that if I moved he might remember I was there and the hand he was holding wasn’t his own.
I thought about just how far we’ve come and how we still have SO far to go. And I was reminded that I’ll gladly take this journey, any day with him as my tour guide even if it means a lifetime of challenges because the payoff…it’s big and bright and beautiful, and some days it says “I love you, mama”.