Andrea, the Director of the CLC program, with her Hungarian accent, keeps making me cry. The woman must think I am a ridiculous, emotional wreck who has not come to terms with my son’s disability – a feeling that I would profess is entirely not true – or maybe it is?
I just came from my second meeting with her about Max. This time she has two weeks worth of knowledge and observation and she has the whole picture. In summary, she called me out. She knows that on some level I don’t think we belong here, that I have been brainwashed into believing that Max will never have surgery, and that I may be doing him more harm than good by acting like he is normal and not forcing him to recognize himself as disabled.
These are not nice things to hear, even in broken English. I have spent the last 24 hours thinking about her strongly worded suggestion that Max finally have the surgery we have been avoiding with the illustrious Dr. Nuzzo. I mentioned it to some of the other parents, all of whom have children who already had the surgery, travelled great distances at great expense to see a doctor whose office is 20 minutes from Metuchen. Overwhelmingly, they proclaim it “miraculous.”
I came to Michigan thinking that we had it all figured out. We came here with our carefully selected equipment, shiny new braces purchased for this trip, and several pairs of his tried and true Converse All Stars. This program was intended to be a chance to do what we normally do, but more intensely. I expected accolades on my wonderful parenting, gold stars at every turn and applause wherever we went.
What I am finding is that what I came for is not what I am leaving with.
The truth of the matter is that Max is not going to make much more progress than he already has doing more of the same. It may be time for drastic changes that offer him a slightly altered version of himself and a drastically altered mind-set for me.
The equipment he came with is not the equipment he is using the most. The braces have been determined to be “useless” resulting in an order placed over the phone for different ones to be shipped to the hotel. The ubiquitous Converse in every color under the sun have just been replaced by several pairs of not very cool sneakers I purchased at “Shoe Carnival” around the corner.
Was I really foolish enough to think that just because he and Sophie could wear matching Converse, that everyone, even Max himself, would forget that he has CP? If you ask Andrea, the answer just might be a resounding YES – even in Hungarian.