My Special Grandson

Hello again all who visit me, Today, Sat. 01/30/10 is a dreary wet day in which even ducks would look for cover. The sun tried to come out a couple of times, then just gave up. I need the solace of my blog to help me make it through some dreary hours here.

I would like to tell you about my 12 year old grandson who, in my book, is a very special child. He was born deaf in one ear, (no ear drum,) and very hard of hearing in the other ear. He was also born allergic to food. At the time I was living in Al. and of course I came home to North Fl for his birth. Due to the many problems of the severeity pf the food allergies I stayed until he was four months old. A team of Doctors, my daughter and I kept him alive, the Dr's with IV's, (drops of nutrients came right back up) my daughter and me with anything we could think of, goats milk, powdered milk, canned milk, regular milk, special formula's, gatorade, powerade...you name it, we tried it. It all came up, the redness, itching and swelling started. We had to have an Eppie Pen at all times. And he screamed around the clock. He was hungry.

And we prayed. And we prayed. And we prayed. He did not grow, he lost weight. I finally had to return to Al and my daughter and I were on the phone daily, we cried on the phone, we prayed on the phone, we gave advice on the phone and all the while, over my daughter's weeping for her dying baby I could hear him screaming.

My home in Al was located on top of a mountain and it had a long rocky driveway from the main road to my house. One morning gotten up early and cooked a big pot of Collard greens and corn bread. I heard a car coming down my drive and it was my daughter. She had driven all night to get to me. She handed me the baby, now almost a year old and no bigger than a four or five month old baby, and with tears streaming down her face she said "mama, he's going to die. He's going to starve to death and I cant handle it" He was limp and listless. The doctors had finally told her even with the IV's and all they could do, the end wasnt far off. I got them in my house, took one of his baby bottles and strained it full of liquid (pot likker) off of the collards. My daughter sat slumped in a chair holding the Eppie Pen and wondering if I was going to kill her baby. I was wondering the same thing. I was scared to death. He sucked the bottle dry, no swelling, no vomiting, no nothing, just a baby to burp. And burp! Lol! And he went to sleep and slept like a normal child, no moaning, no sudden vomiting or stiffness....just a soft little snore. When he awakened I mixed some cornbread with some more "pot likker" and fed it to him. Later I put some of the actual collards in the blender and pureed them. It all stayed down.

My daughter stayed with me eighteen days. During that time we had learned to barely touch our finger to some food and just, very lightly, touch his lip with it. If it was something he couldnt have his lip would turn red and swell a tiny bit. We learned he could eat watermelon. And...hey, I'm from the South, I love chitlin's and fresh pig tails.... I cooked some and learned I werent the only one who loved it, so did my tiny grandson!!

He lived through the Grace of Jehovah God showing us how to feed and what to feed one of His helpless children. When my g/son was about three years old I moved from my not so lofty perch on top of the Alabama mountain back to Florida. The few foods he had begun to thrive on had turned against him. My daughter learned about a new Research for Severe Food Related allergies and needed people to sign up for it. It turned out the age group for this experiment was for one to be at least sixteen years old. My g/son was flatly refused in the program (Xolair) but they under estimated the power of a mother living in fear her child would die. She got him in it after a hard struggle.

Then began the serious task of his hearing. He had already, at such a young age, trained himself to know certain words when he "saw" them. He was lip reading. (Of course he was wearing a hearing aid in his "best" ear but he had such a poor quality of hearing in it even with the aid.) We also taught him sign language and we put much effort in encouraging him to talk, to use his voice and speak, not just point. He was a willing "student" a happy child and easy to work with. He loved learning and he loved food!!!! When he was around six years old one of the ear specialists thought he may be a bit to young for surgery but asked my daughter if she was willing to risk it, said kids are usually around twelves to sixteen when they have that procedure. She talked it over with my g/son who said "Lets do it"!! They took a skin graft from behind his ear and made him an ear drum. One year of taking, rejecting, taking, rejecting. And it finally began working. Over the years his hearing aid was upgraded, of course, and while he defended it the best he could children at school would run by, snatch it from his ear, run off laughing and throw it on the ground. Sometimes one would be broken, sometimes not. He also had to have a speaker box on his desk with an ear phone to be able to hear the teachers who were supposed to wear a tiny microphone clipped to their clothing. He passed into First Grade and at first was getting excellent grades. Then his teacher moved and his grades dropped dramatically. When my daughter started questioning the new teacher she was told my g/son "was rebelling against the loss of his favorite teacher" It came to light the new teacher had told another teacher "she wasnt wearing that thing clipped to her clothing" Needless to say she wore it after that. My g/son became and remained an "A" honor student. In fact, he was just made the "A" Honor Guard over the other Honor guards in a ceremony in which the Sheriff attended and shook his hand.

The Sheriff was crying.

This is how it happened: My g/son was just one of about eighteen students that had been voted by the school for that position in the Honor Guards. Of course all the mothers of those students practiced their child's Acceptance Speach with their children as did my daughter. After much ado with the parents and children waiting at the ceremony my g/son was anounced as the "A" Honor Guard over the other Honor Guards (which meant not only does he have to watch the children but the other Honor Guards also) The thing is when the Speaker called his name she pointed out "he had made that acchievement in spite of being hearing impaired."

He took the stage and politely thanked all those he should thank but that's where his and my daughter's well rehearsed speach went down the drain. He clearly stated he didnt know his hearing or lack of it was going to be brought up, that he wasnt up there because of his hearing, he was up there because he wanted to be somebody someday and the only way to do that was to study. He said he was up there because he deserved to be up there accepting that award. He also pointed out there are a couple of other children in his school that wear hearing aids and are taunted like he was at one time. He told those kids to wear their hearing aids with pride, it was their link between hearing birds sing, their younger brothers and sisters playing, music, laughter, even the sound of tears when one is crying. He told them it is not a handicap, it is a treasure, to wear their hearing aids, their glasses, whatever they need, with pride. There werent a dry eye in the place.

When he had only been on his Honor Guard duty one week he came by to see me. I asked him how he liked it. He said "Granny, kids are the meanest things in the world! They wont listen to nothing! When i tell them not to do something because they will get hurt the minute I turn my back on them they are doing the same thing again! The minute I get eighteen years old I am getting myself nutered" I said "Well, I think only animals are spayed and netured, I think men get a Vacectomy" He said he didnt care what they done to him as long as he couldnt make kids, he just couldnt deal with them!!! LOL! LOL!

Several months before this happened his doctors had wanted a conference with my daughter and g/son. It was bad news. Most of the people regardless of age thats been in the Xolair program since it started has begun developing some form or other of cancer. They asked my g/son if he wanted to be taken off the shots. My daughter let him speak for himself. He said "No, but he would try to go one month without them and see what happened" He didnt make it a month. He was starving and nothing, not even water, would stay down. It took a month for the shots to get back into his system so he could eat. He says he will have to take his chances and deal with whatever happens as best he can. I have to say I am very very proud of him. Yes, he is a strong little boy, he faces the possibility he can develope cancer and he does it with dignity.

By A Proud Granny