Not Today

Heavy heart. Broken spirit.

That’s the only way to describe myself today. Please don’t waste any trite platitudes on me – I call “bullshit” on the idea that God doesn’t give me more than I can handle. I think He regularly gives me more than I can handle so I remember to ask for His help.  And today, it feels like He has loaded my plate to the breaking point.  Rather than feeling lighter, I feel like our challenges have become heavier.  Much, much heavier.

Today, we had a follow-up appointment with the Nurse Practitioner at kiddo’s neurologist’s office. After finding out his main provider is leaving next week for another state, we’re glad we set this appointment up months ago.  The NP's next available appointment is…wait for it…February!  Shocker.  So, of course, we're on the cancellation list.  (Side note: My disappointment with our lack of timely medical appointments and resources for children here in Grand Rapids, especially with the greatly-touted, upgraded DeVos Children’s Hospital, is fodder for another post.)

We started kiddo on a certain medication about six weeks ago, and today was the first office visit since.  A few weeks ago, we had to back his dose way down after determining (from horrific, violent behavior and out-of-control mood swings) that he was getting too much of it. While he’s calmed down a bit from the too-large dose, I really don’t see much progress from where we started earlier this summer.

After consulting with the NP (who is new to us, but clicked right away), I felt like Jack Nicholson in the movie  “As Good As It Gets,” posing the question as to whether this is it in terms of the behavior we can expect from kiddo. The NP reviewed all of our info (side note: I’m soooo f’ing tired of tracking meds, behavior, foods, etc. – I’m ready to pull my hair out! I suppose that should be another post, too.) and checked out kiddo, asking him questions and posing other ideas about better behavior which were quickly abandoned when she realized just how dang smart he is, and that talking about making good behavior choices isn’t enough.

Her recommendation? She seems as much at a loss as every other specialist we’ve seen as to what might help his behavior. No surprise there. She did make one recommendation for an anti-psychotic drug, not indicated for children his age/size. (We’ve already had the same conversation w/ his psychiatrist). Oh…and the idea of “in-patient care for medication management.” (Read: psych ward.) I almost threw up right there. (I did at least make it to the parking garage before heaving.)

Yeah. These are our options right now:
1) Wait and see
2) Check in with the psychiatrist (that appointment is still 2 weeks out, with no window to slide in sooner)
3) Put him on a drug with especially-dangerous potential side-effects OR
4)  Check him into the psych ward for in-patient care

In case you're wondering, we're going with option #1 while we wait for #2.

I’m beside myself with grief at the thought that there is no good option to help him and, even worse, that this may be as good as it gets for our kiddo and us. Ever. And that’s a shitty prognosis to hear as a parent. Period. No sugar-coating it. No platitudes are going to change it. And I don’t want to accept it. How am I going to keep going when I can’t hope that tomorrow could be better than today? My heart is breaking right now, and I’m in tears as I write this.

I’m waiting for my experience in parenting to include the fun I see other families having. I’m jealous. So freaking jealous sometimes, I can barely stand it. I see other families with neuro-typical kids, on these spur-of-the-moment trips, photos of kids laughing/playing at the beach, in the park, at the zoo, on vacation and more, and simply don’t know how to make that happen.  And I so desperately want it to happen.

So far, my parenting experience has included hundreds of hours in the car, driving kiddo to/from doctor’s appointments, and various therapies (the list has included multiple rounds each of OT, PT, feeding, speech, hippotherapy, sensory gym camps, and therapeutic riding to date), navigating years of IEPs with the school system, advocating for what he needs to be successful there, as well as tracking behavior, medication/supplement schedules, food sensitivities and trying to keep him from tearing my house apart. Most days, I’m just trying to handle the basics and find a way to let go of enough stress so I can get a few hours of sleep before it starts all over again.  (Now you know why I farm so much on Facebook, right?!)

A trip to the beach, you ask? Why, certainly…as long as I have an out when kiddo gets over-stimulated by too much sun, sand or surf. How about a quick jaunt to the museum?  Sure. We’ve done that. And left, almost in tears, because he had a total meltdown since his favorite tea set was missing. Meijer Gardens? Okay…as long as we don’t go in the sand pit. The parents don’t take too kindly to him throwing sand and toys at their children (even when it’s unintentional) and we get dirty looks all the time. On occasion, we even get drive-by parenting advice about how we should be spanking, disciplining more or how their kids, too, went through “a phase just like it.”

Really? Wow. I would LOVE it if kiddo’s medical diagnosis of cerebral palsy with secondary processing delays was just a phase! I’d give just about anything if I could make it so. Magic wand, where are you?! I’d be a waving fool if I could change this for him. Most of the time, I’m surprised I can keep my mouth shut when I hear something so uninformed and stupid, even if the intention was good. I think I know, deep down inside, if I utter a peep toward one of those dipshidiots, the floodgates to the verbal vomit will burst open.  And I'm quite certain that's not going to serve me in a positive way.  (So I'll vent about it here, okay?  Thanks.)

But I can’t just brush it off like it’s a phase. Because it’s not. It’s a part of who he is, and what we have to work with. Every day. From the time his feet hit the floor in the morning until he’s in bed and asleep at night.  I refuse to let it define him, yet I also know that it's a part of him.  And I know I’ll have to find a way to make peace with it.

Just not today.

Today, I refuse to submit and accept. Today, I’m going to cry and rant and rave (and write) and bitch and moan and complain and scream and let it all out.  (And -- sorry, Mom -- drop a few more  f-bombs in private while sobbing, then put on a pot of tea when my tears have subsided.)  And ask for love and light and prayers for all of us.

Because he’s my kiddo and I can’t stop looking for something to help him. To help us. To make a positive change so we can all breathe and relax. A change for peace in our hearts, our home and our life.

No.  Not today. Today I refuse to believe that this will be as good as it gets.