Going away is wonderful until about an hour before you have to pack up and go home. Then reality comes screaming back in your face.
Our weekend respite for Sissy fell through at the last minute on Thursday so The Dad had to tough it out. He was bedraggled by the time I walked through the door Sunday afternoon. Sissy held it together all day Saturday but came unglued on Sunday before I got home.
Finding the need to "replace" another member on our therapy team for Sissy, in part because of the respite fiasco, I'm getting weary of discovering that the trained professionals know so little. It is tiresome to always be the on-the-fly educator for the newbies and even more exhausting when the newbs demand explanations for my parenting choices. Um, yeah. Ok. Because you've been doing this for HOW long and it's only your day job?
It's disconcerting to learn that at 36, I have wandered so very far from the nicey, nice little gal I was when I set out on a course for life. 99% of my attitude stems from butting heads with people that think they get it but have no earthly clue. The other 1% is grief knowing that I DO have a clue and really wish I still wandered the globe in ignorant bliss.
The staggering truth? Despite the fact that 100% of my social, educational, emotional, mental, physical, financial, and spiritual life revolves around being in contact with persons with mental health issues and developmental delays, only about 10% of the global population is afflicted. So my current reality represents only one tenth of the truth of what life could be like, if only...
I won't lie, it is extremely challenging to enter the homes of the very affluent persons that live in our community so I can wash their windows. Bathrooms larger than my bedroom (which includes our business office). Hall closets larger than my bathroom. Garages with automobiles that total in value three years of our earned income. Trappings and trimmings of life that I don't even know exist except for the fact that I see it in others' homes; that I don't know exist because I don't have time to even pine for trappings and trimmings, let alone shop for them.
Yes. I enjoyed the quilt retreat. For the most part, I sat under the california king size quilt I'm hand quilting. I sat and stitched and thought of many things. I tried to laugh and be merry but mostly I contemplated the silence and how blissful it was. I also tried not to be jealous. Some of the women had quilting supplies and accessories valued at more than a new automobile, and I quilt on a shoe string budget, scrounging remnant bins and ends of bolt pieces to acquire a stash of fabric that I might use later for projects that I self create. Oh yes, I do my own quilting math, thank you very much. And my machine is a 15 year old JCPenney model. Compared to the Berninas, Janomes and feather weight singers, my machine is like a two door 1973 datsun compared to a 2011 Lamborghini. They talked of their trips to quilt stores, conventions, shows and how they set up their sewing rooms at home and I ... had nothing. Nothing to say at all. Because what do you say when you're "sewing room" is the kitchen table that is still sticky from jam sandwiches?
My life is so radically different from anyone elses perception of "normal" that it's not even worth discussing. I'm tired of trying to explain it to people so they can get irritated at me or say something that irritates me. I'm tired of being the professionals' educator. I'm tired of being face to face with the other 90% of the world that doesn't have a clue.
AB had a rough morning and an equally rough afternoon. He bolted through the front door in a fire and a fury and threw himself on his bed when we got home from school. I went in to console him and he drew away from me and got as close to the wall as he could. Without a word, I grabbed the sensory brush, lifted his shirt and began brushing. He cried silently to the wall, I cried silently to the back of his head. I wanted to say, I know son, I know. I understand EXACTLY because I feel that way too. And there's nothing, nothing in the world I can do to fix it but instead of talking, I brushed. Then I rubbed his hair, kept buzz-cut short because anything longer becomes a sensory issue. I climbed up on the bed and hugged him, knowing he was safe at that point and wouldn't haul off and hit me. And I cried some more because I'm SO tired of telling Sissy's therapists, "BUT I HAVE AN IMPAIRED SON TOO!!!! SISSY ISN'T MY ONLY ILL CHILD!!!!!!!" He finally turned over and hugged me, wiping the tears from his eyes.
Sissy's weekday respite provider arrived on cue and I got up to greet her, wiping tears from MY eyes. "You OK?" she asked?
"Yeah. Rough day for AB. It kills me that I can't help him some times."
I wanted to say, but no one really cares, because you're all here for Sissy but what's the point? The rest of us?
The rest of us cry silently because what's the point of trying to explain it to the ignorant 90%?
Jury's still out on how Sissy is going to do on geodon. She's getting hyper spazzy and her respite provider and I agreed this evening it's time for a call to the pdoc. Sissy's individual therapist asked her to journal her thoughts about returning to RTC (still waiting for paperwork - UGH!) and all Sissy had was I'd be sad and homesick.
I got a lot done this weekend on quilts and such and will post pictures later as I have unfinished work still waiting on me at the table and I want to post it all at once.