I've started to post this several times this week but hit delete because I felt, well, inept and a little pathetic sounding, but every time I sit down to do an update the same thoughts come out, so here it is.
It's been a pretty tough week on me. Working, struggling to get from one appointment to the next, trying to split myself equally between the kids and failing miserably. Zach starts to get sick on Tuesday, and quite honestly, when you've dealt with so much illness with a special needs child, you tend to be more relaxed with your "typical" child. By Wednesday night I was on the phone with the on call pediatrician, which thankfully is the pediatrician that actually sees my kids, because Zach's pulse ox is low and he's wheezing even after being on breathing treatments every four hours. Thursday I take Zach into the office and he has walking pneumonia. Fabulous. Wednesday and Thursday night I was up every three hours to give Zach breathing treatments, and I'm T-I-R-E-D. Friday morning I wake up to this odd sound coming from Zach's room so I jump up and run into his room only to find him still asleep and vomiting...on his back. I wake him up and let him finish and then put him in the shower. Got his bedding all changed and put him in my bed because he's so lethargic. Ten minutes later, back up changing all my bedding because, yep, sick again. So we head down to the couch to try and lay back down. Thirty minutes later, sick yet again. I'm running out of places to put him because the laundry can't keep up with the vomit!
On top of all of that, Alex has been really giving me a run for my money. I need to put all this in writing because it's my "therapy" so if it comes out wrong, or off base, I apologize. But the irony of it all really hit home this week. How can I love someone with every ounce of my being, and hate something about them so vehemently that it makes my stomach hurt? I love Alex for who and what she is, but I honestly hate her disability. I hate the fact that she has such a high pain tolerance that she can rip her hair out and bite herself till she bleeds like it's nothing. I hate the fact that what we take for granted every morning when we put our feet on the floor she can't achieve no matter how much time and effort we put into helping her. I hate the fact that I can't hear her call me Mommy or say I love you. I hate that she goes into such a manic attack that there's nothing she or I can do to stop it. I hate the strain her disability puts on our family. I hate the fact that when Zachary is sick I still have to tell him "just one second buddy" because I have to do everything for her. I hate the fact that I had to cry for hours last night because the thought of the next year with her scares more than anything in this world. I honestly fear how I am going to take care of her as she gets bigger. I can barely get her in and out of her wheel chair, or in and out of the car because she's getting so tall and heavy. Yesterday I was trying to get her upstairs using our chair lift and she completely extended her whole body and would not bend her legs for me to get her up the stairs. I hate it, hate it, hate it. I hold steadfast to the bible verse "If God brings you to it; God will bring you through it", but I honestly don't know how much more strength he can bring me. I'm being real and I'm being me - please don't question for one second my love for my daughter, I will continue to do everything I can for her and leave no stone unturned in trying to better her life, but the more time that goes by, the more defeated I feel.
That's my vent for now, I'm beat and heading to bed...