I truly wake up not dreading the day. After all this time and so much pain that amazes me. Every day I feel the loss of hope, the battle just to get through the day, yet I still wake up not expecting the worst, hoping for the best.
We just finished a month of holidays. Literally a month. Endless days of holiday where we don't do any official "work", but have to prepare endless meals, coordinating a holiday season like nobody can imagine.
I think in all our years this has been one of the hardest holiday seasons due to having next to no help with Isaac. I'm honestly not sure how I pulled off having company for most of the meals, including sleepover company.
One of the hardest parts is having SA home. She needs/craves schedule. Her behaviors are extreme, and very hard to deal with. We did a lot of trips during Sukkot, but the days we ca't go out are hard, to say the least.
B took off most of the time and even though he & SA conflict a lot, it was a help to have another set of hands.
Today he went back to work. I was alone with both kids and the weather was beautiful. I really wanted to/needed to get them out of the house.
SA had created a "spa" in the family room and was trying so hard to wait for some of my time. Instead, I had to do all of Isaac's care before I could even get to sit down for her.
As soon as her eyes open, she asks who is coming to play with her and what are we doing today. Through the haze of my guilt for never being able to give her the attention she needs, I try to keep her busy while doing Isaac's 4 hours of direct care (nebulizers, changing him, giving meds, etc).
Yes, last night I could have started the rounds of texting all over again, but I just didn't have the energy.
I can't begin to describe the feeling that begging for help creates. Having to do it every day is draining, to say the least. SO some days I tell myself its easier to do everything myself than ask for help.
So, as I'm juggling both of them I'm also texting people for playdates and looking on my phone for things for us to do.
Well, at one point SA gets mad at me for being on my phone, even though I was doing it cause she asked me to!
As I went to put Isaac in his chair, I checked the cushion first. It's a loaner cushion fro the Durable Medical Equipment (DME) company. The regular one wasn't working. Well, I realize that this current one isn't working either!
Its flat right under his tush, where he just so happens to have a broken tailbone!!
SO, I still endeavored to get them out of the house to a park about 15 min away (without traffic). I of course had to play "spa" first, so I did that while thankfully one of Isaac's therapists hung out with him.
Then, as I'm getting all of his meds together I realize that his suction machine wasn't holding a charge! I take them out & search the car for the car charger, finally find it, plug it in & it really wasn't working great.
Meanwhile..there were 3 dishwashers to empty, overflowing garbage everywhere, and tons of laundry to do. My cleaning lady texts me last mi ute that she's not coming!!
As I decide to leave and hope Isaac doesn't need the suction that much, SA tells me that she unlocked the front door after I locked it so she could go back in if she wants to.
ARE YOU SCREAMING YET? In my head I was, and it was only 2pm
So, we get to van saun ( we had been there a few days before but the accesible train wasn't available and it was a gorgeous day so I wanted them to be outside.) We go to the carousel to ask them to call the train and get the accesib;e one out. I tell SA that we are then going to the playground where I will nebulize Isaac and SA can play. While I'm nebulizing, I'm emailing the 2 different DME compan ies abput the chair cushion & suction machine.
Esxcept, SA wants me to watch her every minute :(
Finally, I'm able to take her & Isaac on the accesib;e jungle gym for a little & we head for the train. The men who work there are on the older side, & they have a hard time loading him but we get it done & he's thrilled! We go around twice, then head into the zoo to use the bathroom (always interesting with a huge wheelchair).
Then we go to the carousel & the same men work hard to get him up the ramp. Yay! He was so happy.
Need to head home cause Isaac is having music therapy, his favorite.
And then I go to give him a med and find his Jtube clogged. Ok, I'll fix it when we get home.
As I'm driving SA tells me she spilled water all over the car by accident. sigh.
Get home, get Isaac in bed, change him, and start working on the tube. Music therapy has to happen iin bed cause it takes over an hour to unclog.
While I'm doing that, thankfully we have a friend over to keep SA busy in her spa, give her supper.
Meanwhile, I check my emails for responses and the suction machine company responds.
they tell me I need to talk to a respiratory therapist. They say this almost every time the suction stops holding a charge. It usually happens once a month.
This past month, cause of course its all of our holidays, it died twice.
I email them back (while unclogging tube) and say that we need one tonight or in the am cause we have a far away appt in the am.
Thank g-d they believe me & send one out at 730pm.
Finally get tube unclogged (thanks malky-its a 2 person job), get Isaac up in his chair for supper, SA bathed, do laundry, empty the dishwashers, then do all of Isaac's treatments (2 hours) while giving him meds.
Field a phone call while doing more laundry & making the next day's meds, finally get to seep around 2am.
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