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My adoption agency thought no one would want to adopt Joshua. Who would want to adopt a sick baby who was labeled "terminal"? Who would want a baby who was profoundly retarded? Then they remembered our family.

Joshua was such a thrill! I adopted him at seven months old, and he was a beautiful, soft, cuddly little Raggedy Andy doll of a child.

He had been born with severe cerebral palsy, profound mental retardation, and CMV (cytomegalovirus inclusion). He had very, very severe reflux. Now, I am certain that he had GERD, (Gastroesophageal Reflux Disease) but it was not diagnosed.

Here is some information on GERD:

"What Is GERD?

Provided by YourMedicalSource.com

GERD stands for Gastro Esophageal Reflux Disease. "Gastro" refers to the stomach. Esophageal refers to the esophagus, the tube that carries food from the mouth to the stomach. Reflux means to back-up or flow backwards. GERD is a condition in which partially-digested food in the stomach backs up into the esophagus.

* Partially digested food contains a strong acid like that used in automobile batteries. It also contains powerful enzymes that break down food. When acid and enzymes come into contact with the esophagus, they cause irritation, inflammation, pain, and other symptoms.

* The stomach lining has a special protective layer that protects the stomach from acid attack. However, this protective layer does not exist in the esophagus, making it vulnerable to damage from stomach acid and digestive enzymes."

Joshua could hear in one ear, and had good vision. Most children who get this virus before they are born are blind and deaf as well. I was told he was "terminal", but when I asked how long, the doctor said twenty or thirty years. Well, I did not think that sounded too terminal! We'd have a nice long life together. I did not hesitate.

I was deeply thrilled to get one more tiny baby. Most of my children had been older when I found them. And tiny he was! The size of a three month old at seven months, he still fit in an infant swing, and was such a cuddle-bug! The first time I changed his diaper, he gave me a wide-mouthed toothless smile, with sparkling eyes, as if to say “what took you so long, mom?” I was instantly in love!

cradled in my arms
without a word you bless me
little valentine
your smile is a poem
the lights in your eyes a song

(C) 2003 Rosemary J. Gwaltney



~ Rosemary J. Gwaltney ~

 

 

Joshua loved camping with us!


My Darling Baby Boy

 Joshua had an outrageous sense of humor! He was intensely interested in his brothers and sisters, as well as mom. His big brother Kyle worked hardest to make him laugh. He pushed his wheelchair around the house fast, he dragged furniture across the floor, he jumped in and out the window beside Josh’s crib, causing him to laugh so hard he curled in a ball, and could barely catch his breath! Although many of us tried to make him laugh, Kyle was obviously his choice of the funniest sibling! I was so proud of my son Kyle!

 His big sister Noelle insisted on me bringing him to her fourth grade class for show and tell. I put him on the table, and all the children admired him while I explained about cerebral palsy, and retardation. They were fascinated, because to them he just looked like one cute little baby. I was so proud of my daughter Noelle.

 My daughter Skyla, who has Spina Bifida, was very spry, and her favorite thing was to climb up into his crib with him. She always checked to be sure he was comfy, and nothing was poking him. She always played with him, making him laugh. I was so proud of my daughter Skyla.

 My daughter Julianne, who has Down's Syndrome, was my oldest child. She was very motherly toward little Joshua, changing his diaper, taking time to make him comfortable. Always so gentle. I was so proud of my daughter Juli.

 Joshua sat in an infant seat in the middle of our table for meals. Such a darling centerpiece! He was in on everything. At first I took him to my Sunday School class, and he quietly sat on my lap. But he became too noisy as he grew. I could not leave him in the nursery because the virus he had had before he was born was still with him, and it would have been dangerous to the unborn babies of the pregnant ladies in the church. So every Sunday he and I stayed in the van while the other children went in to their various classes, and then to church. Joshua and I listened to sermons on the radio, and I sang hymns to him. Year after year, our Sundays were like this.

 He loved camping. He was healthier and happier when we camped, than when we were home. It was as though he had been born to travel. Watching the world go by, and sleeping with mom at night suited him just fine! The camping life was his idea of heaven on earth! He laughed heartily, slept better, and, amazingly, never got sick on a trip.

 I had to get up to Joshua’s vomiting and screaming up to eight times every night, year after year. Then get up at the crack of dawn to get the rest of the family up and off to school, on five busses, in a never-ending stream. Exhaustion was much too mild a word. Once, I was so spent, I crawled back in bed and in the morning, discovered that I had crawled between the mattress pad and the mattress, sideways, with my head against the wall! It took me a minute to figure out where I was!

 During these years, all I had to do was sit down, and I was asleep. That’s the worst exhaustion I’ve ever known, and that’s saying a lot!

 Joshua was sick almost all of his life with severe reflux. He vomited every bottle, screaming in pain. I fought for his first three years for help with it. His clinic doctor advised me to put him in a nursing home, where they would just let him scream, and it wouldn’t bother anyone. I was outraged! My main priority was with Joshua’s comfort! How to prevent him from living in agony! When he was three years old, I couldn't stand her negative, uncaring attitude one more minute, and I demanded a new doctor. It was hard to be forceful enough to achieve this. I was told that because I had seven children in the neurodevelopmental clinic, any new doctor would have to take on all seven, and no one had that many openings. But I insisted. I was desperate for help for my little son. May God bless the new doctor always. He was kind and compassionate. He began giving Joshua a prescription to help with his reflux, and it did help, but it did not solve it. He also gave him medicine to help him sleep at night. That was one of the best things that ever happened to me, and to Joshua also, I am sure. My poor little boy finally was able to sleep! Joshua still vomited every day, though he cried much less. They finally did a study to see how much he refluxed, to see whether to do a corrective surgery called a fundalplication. They slowly put a radioactive dye into his stomach with a nasogastric tube. Then they determined his reflux was not bad enough to operate for.

 Joshua's second three years was ever so much better than the first! The caring doctor gave him a whole new lease on life!

2000 Rosemary J. Gwaltney