I watched the bright yellow bus drive away with my miracle boy inside. (And sure, I think both of my boys are miracles…but it’s our second’s, my baby’s, first day of Kindergarten.) And wow. Of course I’m surprised to find myself here. Not the drinking coffee in pristine silence moments, but the two-boys-in-elementary phase. And I have all the feelings.
Hello, all the nostalgic/whoa-life-moves-fast/what? feelings everyone has at this point. Probably magnified by my turning 40 this week. But there’s more…
When they call you and tell you your child’s brain, the actual structure, of it is very different than most everyone else’s, you basically freak out and have to grieve and let go of who you thought your kid was going to be. And it’s hard. If you’re me (a recovering perfectionist), you’ll research and be even more worried that there’s just not much to go on. You’ll read that his rare combo of rare “disorders” puts him in a one in 100,000 club. It’s lonely.
But eventually you find your tribe. Some you already had who stick with you and make your crazy journey their crazy journey. Friends from college who face other big diagnoses. Family who wear their wheelchair heart shirts with pride. The Perlman families who become your family. A Facebook group that becomes a lifeline. The preschool mamas and kiddos who invite your “different” into their lives and celebrate it.
Then whoosh…you’ll look at your 5 1/2 year old and be amazed at how far he’s come thanks to your tribe and his village of teachers/therapists/doctors/aides. He walks and stands (in spurts) with minimal to medium assistance. He grows in independence daily while babbling and talking when you least expect it. His maneuverability on wheels (the chair that was a leap of faith considering he didn’t self propel when we ordered) is outta sight considering his visual processing delays. And you’re surprised at how vivacious, curious, loving, empathetic, smart, hilarious, and handsome he is–traits so inherently Joel that even a funky brain couldn’t stop them from developing.
So I’ll wear my shades to hide my puffy, misty eyes today. And also because the future is so bright. Yellow. School bus yellow to be exact.