Twenty Years of Heartbreak and Oceans of Tears

Over 20 years ago a beautiful baby girl was born to my eldest son and his wife. Her nickname is "Boops". She was a bright eyed, alert baby, seemingly perfect in every way, but the neonatal pediatrician detected a problem with her heart and had her transferred to Texas Children's Hospital in the Houston Medical Center where she could receive the specialized care she needed. The specialists there determined that she had a defective valve which surgery would correct.

"We'll repair it and she'll be home in a few days, less than a week," they assured us. Nine months of hospital hell ensued, in which time my daughter-in-law remained at Boops' side, coming home for a couple of hours only twice in all that time. The heart repair was a success but complications after complications occurred and time after time we were told she would not survive. For nine months our lives were an endless round of hope, despair, and deathbed watches. She would pull through one emergency only to be struck with another.

Ultimately she did survive. Instead of bringing her home "in a few days" it was nine long, harrowing months later. Instead of the near perfect little baby as she was born, she was blind, nearly deaf, severely brain damaged and profoundly retarded. She cannot sit alone but must be harnessed into her special high chair or wheelchair, or propped with pillows. She must be diapered and spoon fed and carried from bed to chair. She has never spoken a word, merely cries, screams, or sometimes laughs. In all ways she must be treated as a small baby, in spite of the fact she is now bigger than her petite mother.

An army of therapists and the extended family pitching in to help was fruitless - except she was finally taught to chew so she no longer had to be fed strained foods. Even so, food must be very soft or she chokes. There are times when she appears to suffer pain and screams in agony, but she cannot tell us what is wrong. Rocking her, walking the floor with her has no effect, and is difficult when the baby is 5' 2" long (tall) and weighs 110 pounds. It has been a hard, painful 20 years, especially for her mother since she and my son divorced, and she is a single mom with 2 other children.

Biting her lower lip, which is a no-no as she has made her lip raw doing that.

Laughing in glee. What does she find to laugh about in her dark, almost silent, empty world? She knows nothing of our world and does not respond to it , nor does she respond to "baby play". My grand mother said that angels were playing with babies who laughed as she does. That's as good an answer as any.

Appears pensive. What does she think about? Can she think? What fills her mind?

My former daughter-in-law and her normal daughter, my grand daughter. For 20 years the family life has revolved around Boops and her needs, and the normal children always had to take a back seat to Boops' care, a full time job. For years my daughter-in-law carried Boops every where she went, on family outings, shopping, visiting and tried to give the other two children a semblance of normal life. Taking Boops out was like moving day at the zoo, with hauling her big, heavy specialized wheelchair and all her equipment and care products with them. Now that Boops is larger than her mother, it is so difficult to take her out that my daughter-in-law, who has handicaps of her own, has become a virtual hermit, preferring to stay home than to suffer the hassles.

Now that Boops is an "adult" she cannot get the Crippled Children's benefits she once did. My daughter-in-law cannot get state aid because the authorities tell her that since Boops has attained her majority and is legally an adult, she must file claims herself! Arguing that Boops has the mind of an small infant and is incapable of filing for herself falls on deaf ears. They tell her that she must go to court, declare Boops incompetent and obtain legal guardianship for her. My daughter-in-law has no money for lawyers and the pro bono attorneys will not take her type of case.

Furthermore, the authorities inform my daughter-in-law that in order to get any type of state aid, she must take job training and get a job (workfare). She doesn't need job training; she has a profession. But she cannot work because she cannot get day care for Boops. Because of Boops' special needs, no one will take responsibiliy for caring for her. The authorities brightly offered her help: for a few hours one weekend a month they will send out a care worker as respite for the mother - give her a mother's day out. A couple of hours once a month does not help with holding down a job. The son has left home and the younger daughter is still in school so cannot care for Boops. Anyway, Boops' needs are too much for a little teenager.

That isn't all. Applying - or trying to- for medical assistance got this response. They said that if she ould not provide medical care for Boops, they would step in, take Boops away from her and put Boops in an institution!

My daughter-in-law lives in fear of Boops getting sick and the state would take Boops away from her. Several years ago during a family emergency my daughter-in-law checked out some state institutions for temporary placement of Boops. In one there were reports of sexual abuse of the patients, either by staff or other patients. In another a scandal erupted that the staff was using cattle prods on patients as a means of behavior modification. My daughter-in-law fled in horror, vowing never, never would she place Boops in one. Even at best, Boops would not receive the loving conscientious care she gets from her mother.

She and the 2 girls exist on the small child support she receives from my son. Now that Boops and the boy are legally adults, the teen age girl is the only one she receives support for. (My son is Bipolar and rather unstable so is little help.) They live about 70 miles from us so it is difficult for this side of the family to help. My daughter sends them a little money sometimes. Due to my reduced circumstances I can no longer help as I used to.

Children with Boops' problems usually do not live to adulthood. The fact that Boops is healthy, well developed, well nourished and as happy as it is possible for her to be is a testament to how well her mother has cared for her. You can see by her pictures that this is so. Being poor should not be a reason for the state to take a child away from its mother. My daughter-in-law was always a hard worker and is willing to work IF she can obtain proper day care for Boops, her top priority, but she cannot. The welfare of her children should be every mother's top priority but especially a child that is as totally helpless as Boops is. Every door has been slammed in her face. The authorities smugly tell her that if she'd just go get guardianship of Boops, then she could file for aid herself, ignoring the fact that there is no money for lawyers.

Is this common sense? Is this just? My daughter-in-law, my beautiful grand daughter and my lovely 20 year old grand "baby" just fall through the cracks and no one in positions of power and authority will make an effort to seek a solution. I get angry when I see certain people milking the taxpayers for every benefit they can possibly squeeze out and yet my own are denied any help at all. Twenty years of heartbreak and heartache and the beat goes on with no end in sight.

Who in the hell is driving this bus?

( You cannot tell by looking that my darling Boops is blind and profoundly retarded, can you? You can see the woman that she should have been, had it not been for all the tragic complications she suffered.)