It's natural for the hard stuff to spring to mind about raising a child with disabilities—all the doctor appointments, the insurance paperwork and pestering, the heartbreak (especially early on in your child's life), the patience, the scares, need I go on? But then, there are so many things I would have never known if it weren't for Max.
For one, I would likely have not been a part of the disability community. I wouldn't have met so many cool, interesting and smart kids and adults because I probably wouldn't have otherwise connected with them. It's sad to ponder, but true. Until I had Max, I had no ties to the disability community.
If I'd never had a child with disabilities, I probably wouldn't be as resourceful as I am, or as dogged. I've always been a determined person but Max pushed me into overdrive. It started back when he was a newborn in the NICU, and I kept asking me for the physical therapist tp stop by and check him out. The social worker told me I'd be his best advocate, and I have. There is nothing I won't ask, no call I won't make and basically nothing I won't do to enable Max and get him the help and resources he deserves.
If I'd never had a child with disabilities, I wouldn't consider the abilities every single one of us have, in all forms.
If I'd never had a child with disabilities, I wouldn't know about the joy of celebrating progress both big and small. Every new consonant articulated, every math worksheet done, every soccer ball kicked, every step taken toward taking off pants or putting on a shirt, every step into a sensory-scary place—it's all worthy of woo hoos.
If I'd never had a child with disabilities, I would still probably feel mostly pity for people with disabilities, like I used to do when I saw parents at the mall who had kids with special needs. Now I know: My Max is living his best life, just like any one of us. He deserves parity, not pity.
If I'd never had a child with disabilities, I wouldn't understand that parenting a child with special needs doesn't make you a saint—it makes you a parent. Max gets love and gives love, the same as any of my children.
If I'd never had a child with disabilities, I wouldn't know the many forms of communication that exist. I used to think that talking existed only in spoken words. Now I know that it can be a voice streaming from an app, gestures, nods, a look in a child's eyes, pupils rolling up or down to express "yes" and "no." There are lots of ways to express yourself.
If I'd never had a child with disabilities, I wouldn't know that "typical" isn't the end all be all.
If I'd never had a child with disabilities, I wouldn't know how enjoyable "quirky" can be.
If I'd never had a child with disabilities, I wouldn't understand that they can be naughty and nice, stubborn and sweet, manipulative and so much fun. They have 3D personalities, because they are...human.
If I'd never had a child with disabilities, I wouldn't have understood what it's like to be lifted, inspired and loved by a virtual community of parents who truly get it and who give me reality checks every single day.
If I'd never had a child with disabilities, I would be a far less open-minded, accepting, empathetic and understanding person. Really, all my children have made me a better person. A somewhat frenzied, crazed person who wakes up at 3:00 a.m. and remembers she forgot to fill out the form for the class trip but still: a better person.
Parents shared responses to my post on Facebook, including Teresa Brown, an exceptionally wise woman who's parent to an adult child with disabilities, and one with disabilities who passed away. She posted something she'd written a few months before Sarah died, just after her fifth birthday, beautiful words about where she's been but otherwise would have never gone if she hadn't had a child with disabilities.
The people I met who would have been strangers.
The things I have seen that would have been hidden.
The joy about inchstones of progress that are missed by those who only see milestones.
The words I have spoken that would have been left unsaid.
All that has been, and all that is to come, is because of you, the child I never expected, the experiences I never sought, a life I never dreamed would be so different than I planned, harder, but more perfect than I imagined!
I am truly blessed, because of you.