Monday, June 11, 2018

please help

My broken heart wants to do good. Wants not to complain, to feel stepped on. How I dream of someone to stand up for me, to call everyone around and say-hey, she needs help, what hour are you signing up for? Which task can you do?
I wait every day for that person.
And they never appear
I spend day after day begging & pleading with people, agencies, case mangers. I can’t do this anymore. Nobody would. So many jobs, so much work. I’m only 1 person. I didn’t ask for this, but it has to be done. Isaac didn’t ask to be like this, its nobody’s fault. Just a fact.
People don’t like that all I do is need help. Believe me, I don’t want to need it. I want to get up and go about my life, with nobody else needing to know if I went to the bathroom, got dressed, or ate.
I’m sure Isaac feels the same way.
I want to do things I enjoy, and not feel like I owe people for doing it. How can I bake, shop, do something creative, when someone is giving me their time to help? How can I sit down and eat supper (no idea how its getting made) when someone is bathing my daughter?
Is all empathy gone in this “selfie” world? When I was in grade school we got an assignment to pick an inanimate object and put yourself in its’ place. I remember what it felt like to be a chair, a pencil, a wall.
Is there nobody left in this world  who can put themselves in our place and help for a little, then go home and thank your lucky stars you don’t live here?
Or run an errand, make a call, organize some paperwork.
People say money doesn’t buy happiness. Those are the people with the money. If I could hire people to do all these jobs, believe me, I would.
So all I can do is cry, take care of my son, and hope for a miracle.

Friday, June 1, 2018

Couple days in may

How I wish I could follow me around with a video camera. I wouldn't believe my life if I wasn't living it.
I'm sure everyone lives their life making constant decisions about what to do next in their day.
There is so little actual time that I get to do what I need to that it feels like every decision is critical to my life- should this therapist come at this time or squeeze them in someplace else? But then I can't get abcd done, or the rest of the crazy alphabet of my life.
By the time I get SA off to school, change isaac, do his 2 hours nebulizer treatments (while texting 20 ppl & doing email & good thing there's drinkable yogurt & protein bars),  change him, get him up in his chair & do all of his am care its 12pm
If a therapist is coming I get a little time to
Text more ppl
Get dressed
Do laundry
Make phone calls
Do paperwork
Clean up
Go to the bathroom?
Text
Do laundry
Manage crisis x- we ran out of meds, wheelchair broken, what do u mean we have no feeding tubes
Order something online- shoprite order, ran out of variety of stuff isaac needs from Amazon, what do you mean its summer and sa has no clothes that aren't a uniform & only 1 pair of shoes that got ruined in the mud
Text
Rinse, repeat
Oops, isaac needs suctioning, meds, flush, and ANOTHER neb treatment
Hey! How is it 2pm & I have 5 errands to do with isaac and get sa by 345??
But I didn't get to do anything for the construction!!
Run run run
Skip errands 3 thru 5, they'll happen eventually. Or not
Get her from school
Snack, homework, shes bored
Ha ha, I thought I was gonna sneak in another phone call. Crazy eli
Feed her supper
Dont forget isaac- another neb, flush, meds
Text
Bathtime & bedtime already?!
Oh yeah, all that texting got me somebody to bathe her so I can get isaac ready for bed
Another 2 hours treatments & meds
10pm- eat supper? Wash dishes? Put up curtains? Make a phone call?
Give more meds, put on his braces, hold him while he has seizure, text (remember when there were no cell phones!)
1am fill last feeding
Try to sleep?
Yes, I know I'm writing this at 4am but that cuz I took a nap from 12-3 then had to put away food and shower
Oops, sa up. Gotta go
Next installment- the mystery of all those texts....