Ugh. It’s been one of those days. One of those weeks to be honest. I’m feeling quite “glass half-empty” right now.
Dee (our nanny), hugged me and got all voice-shaky-and-eyes-filled-with-tears, as she left tonight and gave me some much needed words of encouragement. Boy, are we lucky to have her.
Since Tuesday or so, I’ve had this tightening in my chest that just hasn’t gone away. I don’t know if it’s everything that’s going on with PJ and her evaluation at school this week or the upcoming evaluations next week, or if it’s all of the new treatment options that were being thrown around for Bo, but I’m just emotionally spent.
One of Bo’s therapists suggested that we try Constraint Induced Therapy (also called CIMT) to help strengthen his right arm. This would constitute keeping his left arm inside his onesie or taped to his side, in order to force him to use his much weaker right arm and hand. Obviously, I understand the benefit and value of this treatment, and have certainly heard of it being used for stroke survivors, but he’s just so little, and I was really concerned about this being detrimental to both his spirit and his cognitive development. How is he supposed to get around, keep his balance, and have the opportunity to explore his surroundings without the use of 50% of his body (considering his left arm would be taped and his right leg has zero function right now)? It just seems like the cure would be worse than the disease in this case at this point.
** In the effort of true honesty and full disclosure, I am sitting at the computer and crying right now. Believe it or not, not as common as you might think; but certainly a testament to how overly taxed I am right now. **
Luckily, after speaking with his other two therapists, it seems as though the consensus is that he’s just too young to implement this therapy right now, but it is a very real possibility, if not probability, that this will be in his future as soon as another nine months from now. That will likely include an additional therapist, who specializes in CIMT. As I’ve said before, I’m not blind to the fact that he’s going to be different, but this is one of those things that is going to make it glaringly obvious. That hurts me for him, for PJ, for all of us… Which one of us didn’t tuck our arms into our shirts as kids and pretend we didn’t have arms, just joking around? I know I did at camp (for some sort of skit, if I recall), and thought it was hysterical. Now he will likely be that kid – but are people going to be laughing at him? That would break my heart…
PJ has been waking up at 5:30am, and skipped naps twice this week. Not fun in general, but also lends itself to exacerbating all of her other issues and behaviors, etc. Her teacher told me yesterday when I picked her up, that they were all playing with shaving cream to explore textures, and PJ refused to touch it. When some of it accidentally got on her hands, she flipped out about being dirty and had to have her hands washed in order to calm down. A few minutes ago, I checked out the blog for her preschool where they post a little collage of pictures for the day along with an explanation of what they did, and yesterday’s was two pictures of PJ with her hands behind her back in the first, followed by one of her with a spoon in her hand that had shaving cream on it. The caption was, “To enable PJ to explore the shaving cream in a way she was comfortable, we gave her a spoon and black paper on which to schmear the shaving cream”. My eyes immediately filled with tears as I realized how much she’s limited by her sensory issues, as well as how touched I am that her teachers care enough to adapt the lessons and activities to accommodate her. I’m assuming this tightening in my chest won’t go away until we have her formal evals on Wednesday…
My sister-in-law called me this week after reading the blog and commented on how she had no idea of what I/we were really going through, because though I tell her about everything, I “never complain” about it. I bet she’s going to change that tune after this post. Honestly though, we all have our own crap to deal with. PJ had RSV when she was fourteen weeks-old and at the time, Scott and I thought that was the worst thing we’d ever been through. Having Bo has taught me that whatever I, or you, or my next-door neighbor, or someone’s second-cousin-once-removed in Wyoming is going through is the best or the worst thing in their lives at that time, and it feels exactly as wonderful or tragic as whatever is happening to you or me, etc. etc. etc. You just can’t compare emotions, so why bother to try? What’s going on in my house, regardless of how much worse it might seem on paper, feels just as stressful as what’s going on in all of your houses. So why am I going to call you up and give you my sob story, when you surely have one of your own?
Obviously, tonight, I have abandoned that tactic and just given in to the stress, aggravation, sadness, concern, and heartbreaking love that I have been feeling this week.
Sorry ’bout that. I’ll try to stick to the usual stuff from now on. I guess we all have our breaking point and this is clearly mine.