Okay let me just say that for the most part I do my damnedest to stay out of any of my children's personal lives and relationships. I am making an exception at this point because of the desperation and sadness I see in the eyes of my first born. Rebecca is strong intelligent and articulate, Noah is intelligent, strong and articulate, they both are loving and caring parents to ALL of their children. The first child born to the two of them (he is 2 now) was born severely handicapped, ( will provide a link to a couple blogs that will go further into this,). His name is Henry and he was born with Cerebral Palsy, the most severe scenario of CP that can happen. All four limbs, are effected and his vision, and many other health issues. As if this is not difficult enough to comprehend and deal with , they have also gotten nothing but run-around and crap from the powers that be, including the doctors. They have not been able to get the help they need to care for their son in an appropriate way, they are telling doctors what is wrong with their child and getting absolutely no answers. The State says "we will help a little bit, but you have to jump through all these hoops first.." They jumped through the hoops. This gramma is furious, no, more like livid. Henry is the sweetest child I have ever known, but his care is constant 24 hrs. a day much of which he is screaming. It is not a pleasant sound, it is earpiercing and desperate. He cannot be consoled, no doctor will help, they are left to suffer this on their own and so is Henry. No child or parent deserves this.
In the mean time they have 3 other children in this community to care for and one out of state that they try their damnedest to be involved with. Zane and Anastasia are older, 11 and 13, Lewis is a baby 7 mo old . The older two have some understanding of what is going on and try very much to be helpful, and they are, Lew understands nothing. Anastasia has started a foundation called :A Sister's Hope, The A.S.H. Foundation and recently had a book sale of which she donated the proceeds to United Cerebral Palsy.
There have to be some answers out there, someone needs to know what to do or how to do it. Bec and Noah have written letters , made phone calls , written e-mails and written blogs. Besides the problems they have with Henry are the everyday problems of raising children in today's world, paying the rent, having a vehicle that will carry their son and his equipment, having a home that is big enough to accommodate their family and Henry's equipment, having enough food to put on the table. Both of them work their asses off in whatever they do.
Working where I worked for so many years, I saw so many undeserving people get food stamps,medical care, housing, disability pay from the state or just flat welfare. How can this be happening. I see it with my mother too. She pays half her income to insurance and still can't afford to pay for some of her prescriptions. I realize life isn't fair, we have heard all the cliches. But tell me why the drug addict can get disability, counciling , housing, food stamps and all kinds of medical care for being an addict and this innocent little baby gets little or no help.
I appreciate all of you who have helped and prayed, I know you have done all you can, this is a gramma venting, not directed at any one. Thank you<3
Remember as you read this I am not a writer; I just write. What I am is a grandma who has had enough of the BS that is my daughter's life.