Bad Cripple blog poster Dr. William Peace wrote the saddest, saddest post. And then he wrote another sad post, and I'll link it here. (Warning: His posts contain a small amount of explicit content and language. You don't have to read it. I'll quote some below.)
Initially, after reading it, my thoughts go to my 3 1/2 yo son with Spina Bifida. How do we give him what he needs to avoid this bitterness?
And for the record, Dr. Peace's bitterness is completely justified. And honestly, the entire oilam owes him an apology.
But practical front aside: As Jews, we know Who is Ultimately responsible for hardships and trials. We also know He loves us more than we can understand. But it's hard to have the presence of mind when faced with difficult situations.
Parking my car and getting my wheelchair assembled is as astounding as the Grand Canyon. I am regularly stared at. When I bike some people have stopped on a dime as I passed them on my hand cycle and yell at me to stop. In the distance I hear "I want to look at the bike". Some bikers have followed me for miles keeping a running commentary about how amazing I am. I now have a trainer and bike in my house. I do not want to be a stranger's super cripple. I am in reality an ordinary person. Yet I am barred from being ordinary.
Emphasis mine.
I remember when my son was first born. I remember reading a phrase from some article by or about a person going through another intense nisayon: "I had lost my badge of normalcy." Those who know me might argue that I was never normal, but I even lost my badge of "quirkiness." People placed me elsewhere.
I had been told, and am still told, that I'm an inspiration.
When my son was first born, and I was called an inspiration, my reaction was simply that I didn't want to be anyone's inspiration. I needed a normal life, where I could be inspired by other amazing people to see what a petty ingrate I was, and plug along trying to improve - and even succeeding to some small extent. THAT's me. But to be the one doing the inspiring? And how? By virtue of having this child? You would think I donated a kidney or fostered a delinquent, but my situation was thrust upon me, unwillingly. It's like being kidnapped, and dragged kicking and screaming onto a stage, take the black bag off my head, and walk away. The spotlight is on me. And there is a large crowd watching, waiting to see my performance.
But time passes. I've had some time to rehearse. I remember a Shavuos shiur by Rabbi Orlofsky. Something like:
In Judaism, there is no "commemorating" in our holidays. Rather, we relive the event every year. Not literally or practically in this plane of existence, but the energy and spiritual reality of the event comes around each year. And Shavuos is the day we choose to receive the Torah from Hashem. And every Shavuos, we're choosing the Torah again and again.
So one might ask, "Well, what if I decide that this year, I don't want it?"
And the answer would be, "Too bad."
As Rabbi Orlofsky explained*, it's yours. This is your mission, whether you like it or not. You can choose to ignore it, but the consequences of that decision will chase you down.
People expect me to be an inspiration because they are taking their cues from Gd. If He put me in an extraordinary circumstance, it must be because He expects me to be extraordinary. So why shouldn't His people have the same expectations? On a second look, it's really not so unfair.
I also have the choice to wallow in despair.
But whatever I do, it doesn't change the mission Hashem gave me: To raise this child b'simcha, b'ahava, and with tremendous Hakaras Hatov to HKBH. It is my most fervent wish that I can merit to see my son as an adult who is filled with love of life and Torah.
There's more to say about Dr. Peace's post which I'll write another day.
Wishing you all of Hashem's open brachas in perfect abundance,
Rivka Devora
*The Rabbi's explanation actually involved a Harry Potter reference which I am not cool enough to remember.