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??
