If someone finds it, please let me know.
Yesterday AJ was denied physical therapy. Well, technically they approved 6 visits from now until November, stating it was follow-up to a home program. In English you say? This means his therapist is supposed to "check-in" with me and see what we're doing at home once a month.
Um, no. Total wrench in our plans for the summer. Remember how I mentioned AJ loves his pool therapy?
We're meeting today to discuss a plan. A plan that has very narrow options. Today is also a big day in terms of "will we have a place to live in a few months" and a sudden reminder of Jeremy's brain getting funky.
I grew up Lutheran, as did Jer, although we were in different synods. Mine was middle of the road with a bit more strictness than other churches of that synod, and Jer's was liberal. So much so that I was freaked out when I first attended his church when we were dating. This congregation greeted one and another, shook hands, and moved around the church. HORRORS. In my chuch, we barely turned around and said hello.
We married in Jer's church, which became our church. AJ was baptized there, but soon after we felt unwelcome. It was a period of uncertainty in our lives, just before AJ was diagnosed with anything, and we felt laser beam eyes stare at us as AJ cried and fused in the back pew of the church. As we moved to the cry room, we read a sign that said, "Please keep your children quiet, the glass is not soundproof." We realize now that we took the sign our of context, but it was enough to make us never return to that church.
We ignored the church idea for a long time, afraid of the indirect rejection happening. It is amazing how things change when you have a special needs child. Over a year ago we found a church closeby. After watching some sermons online, I found myself in tears. I sent an email to the pastor entitled "Lost Faith". In which I literally spilled our guts and asked pertinent questions that I had no answers for. His response was understanding, encouraging, and heart-warming.
We've attended the church a few times, and even though they have a buddy-program for children with disabilities, we still haven't taken AJ. Why? Too scared. Yep. We feel a connection when we attend, which is what is supposed to happen, but we still shy away from it.
Throughout our journey with AJ, I've heard things like: You are the best parents in the world. You are a saint. He is so blessed to have you as parents....my new favorite line to despise-you were his savior. Um, no. I know you are trying to make me feel good, but really it just pisses me off. I am human, just like you. I do not want to be put on a pedestal because guess what, pedestals fall. I'm confused as to God's plan in all of this. Some days I think it was meant to be, other days I'm completely at a loss.
What doesn't kill you makes you stronger. Well, I'm feeling like Pop-Eye already, and I don't really need to be any stronger. (And yes I like spinach) When is enough, enough? I realize that I have not experienced things such as genocide, the tsnuami in Japan, or homelessness. I realize there are people who are experiencing much, much worse.
But given all of that, we're still feeling how we're feeling. Who's bright idea was it to have my husband's brain go hay-wire when we've got our hands full with AJ? When is enough, enough? "God will never give you more than he and you can handle together." Well, we're not together. Perhaps that is a problem, perhaps not. All those quotes annoy me honestly. And don't try and push your faith on me because its your faith. Not mine. My faith has been shaken again and again. I know He's there, I just want to pick his brain. I know, I know. You shouldn't question the Master Planner. Well this planner wants to. Let's have coffee and hash this out.
Everytime we feel like things are turning around, something else happens. Oh I know, woe is me. Pity in the USA. But this is my blog, and if I want to share my absence of faith, I will. I was numb when his physical therapist called me yesterday. I gave her a line about remaining positive, but really? I wasn't. I was numb and at the end of my rope. I'm numb about Jeremy's MRI today. I'm just numb. I've lost the ability to hope, to hope for the best possible outcome. It has been along time since we've had the best possible outcome. Sure, the little things are natural highs-but we all know they never seem to last as long as the lows do.
Faith is a tricky thing.