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.

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....

may 30 2018. here goes the crazy

in my head there has been a book for 23 years. Title? "that never happens" maybe one day it will get out there. for now, this will have to suffice. I can't count how many times I have heard -"that never happens" for the past 23 years since my angel Chavie was born.

One day I'll go back to the beginning
For now, I must get the craziness documented or I will GO CRAZY

My Isaac (Chavie's brother) is 20.5 years old. Every day that he lives is a miracle.
He has Aicardi-Goutierez Syndrome #5,like his sister did. It is a horrible, awful, degenerative disease. So rare that there are about 500 documented cases worldwide.
It affects just about every part of his body, starting with his brain.
Isaac cannot sit up unassisted, hold his head up well, walk, or talk. His hands cannot hold anything or his fingers do anything like pointing.
He either lies in bed or sits in his wheelchair. His body betrays him constantly. His legs are permanently bent into painful contractures. His toes are bent under, getting blisters all the time. He has horrible scoliosis, hips that are dislocated, and bines so fragile they break at the slightest wrong move.
He also has a mutation of Cystic Fibrosis which causes frequent respiratory infections.

He has seizures which wake him all night.

He is in so much pain he has bit holes in his lips because that's all he has control over.
He has a specialized feeding tube, called a G_J. It needs to be flushed every hour throughout the day or it will clog and replacing it is a surgical procedure in Interventional Radiology that is only open mon-fri, 9-5. he is on 24 hour continuous feedings.
He gets over 30 medications in his tube from 6am to 1am every day. He needs more than 6 hours of nebulizer treatments held for him every day.
He has a special machine to keep his lungs clear and a suction machine to suction him constantly to keep him from choking. There is more machinery in our house than any hospital room.

This covers his basic needs. the detailed list goes on for pages.

Most importantly- ISAAC IS NOT HIS DISEASE. He is an amazing, incredible, adorable young man.
His smile lights up the sun
His happiness makes you feel good all over
All he wants and radiates is love. and kisses
his pout says it all-don't leave me, I need you. I don;t like what you're doing.

HE IS A PERSON

-that needs 6 full time people taking care of him.

But he has 1. Thats me.

Medicaid, in all its wisdom, says he is eligible for 16 hours a day of nursing care.

The nursing agencies, in all their wisdom, HAVE NO NURSES.

I have been accused endlessly of having too high standards. Because I want my son to live. And, heaven forbid-I want him to live as pain free as possible-

I have already lost one child when she was 14. I miss her every single day for the past 9 years.

I have been beating my head against walls, begging for help, for more minutes and years than is possible to count.

Just because g-d saw fit to give me these children does not mean I am not also a person. I need help taking care of him in order to try to live like a person.

In the USA in the year 2018, I cannot get that help.

We pay thousands of dollars in taxes every year. We have elected officials who are supposed to help their constituents. But no matter where I turn instead of help I get accused, accosted, yelled at and put down.

Just because my children weren't born with a money tree to hire the help we need does that mean our entire family should suffer??