This weekend I picked up The Elephant in the Playroom: Ordinary Parents Write Intimately and Honestly About the Extraordinary Highs and Heartbreaking Lows of Raising Kids with Special Needs by Denise Brodey.
I usually shun away from these kinds of books because I get very frustrated and depressed reading inspirational stories. But I skimmed it and saw that it was compiled in short essays by a variety of parents. I thought: okay, I'll give it a try and if it annoys me, I'll just send it back to the library.
Instead, I was relieved to see stories that match my own. Where the robot-like-expectations of constant consistency and endless patience are unachievable myths. Where numbness sets in, blinding me to just how atypical and unpleasant my life can be, until something brings it into devastating awareness. Where the compliments of others about how "strong" or "amazing" I am only hurt and make me feel more isolated.
Some of the parents in the book had to make the heart-wrenching choice to send their children away to residential programs to protect themselves and other members of their families. Some quit their jobs to become full-time therapists, advocates and homeschool teachers. Some divorced. Some moved to get access to better programs. Some needed medication. All of them sought therapy help for themselves.
Their lives were transformed and not in the traditional butterfly kind of way. In a loss of a limb kind of way.
They love their children more than anything. The actions prove it since there is nothing they will not sacrifice to give their child what he or she needs: even their own preferences, pride and expectations.
As I read it, I wondered what I would have written about, had I been asked. I could have written about our relative success with Alex's eating. After 8 years of relentless effort, he's no longer on baby food. Of course, with his latest tantrum over eating ringing in my ears, I'm not sure I could persuasively call it an unqualified success.
I could write about the ongoing frustration of cleaning up "bathroom-product smears" (one of the mom's euphemisms for BMs). I could write about the exhaustion which sets in as one hope after another is crushed. I could write about the horror at feeling jealous about other families' success.
I could write about how Alex still makes me smile and how glad I am that he still seems to be happy in his world.
The frustration is real. The despair is real. The moments of joy become all the more poignant for their rarity.
But tonight, I feel a little less alone. And that helps.