My mame is Rena Joy Pickles. Don't laugh; that's my real name. I live in Galveston, Texas, with my husband, Charles ("Chuck") and our five children. "Chuckles" the Bull Mastiff rounds out our motley crew. (The kids named him; I didn't! LOL)
I am going to write about our youngest, Addisyn. Addisyn Michael was born two years ago, a seemingly healthy baby. It was apparent from the time of his birth that something was seriously wrong. He was born with an abnormally small head, a condition known as microcephaly ("small head").
It was not known whether he would be disabled or not. The news shattered us.
Yet the news was to get worse in time. It turned out that Addisyn not only had microcephaly: he also had signs of being brain damaged. Just how much was not known until further tests could be run. He had seizures and signs of cerebral palsy.
As he grew older, Addisyn exhibited more signs of his disability. The doctors predicted he would never walk or talk, and remain a newborn, as far as development. Although he would age, he'd remain an infant, would need 24/7 care. He had just too much wrong with him.
Now at the age of two years, Addisyn is more like an infant than a young toddler. He cannot sit up without help; he is difficult to feed (he may have to end up going on tube feedings before too long, according to his primary doctors), and he often ends up in the hospital periodically with myriad problems that have threatened his life. He is on oxygen most of the time; his lungs are weak.
Out of all this doom and gloom, there is some good news: our son is able to hear and see, and he can smile if you speak to him, say his name, hold him. He loves people; the more people that are around him, the happier he is (unless they are doing painful procedures or tests on him, that is).
When we go out in public, we put our son in his specially made stroller, and we go on long, leisurely walks. Addisyn loves the feel of the wind on his face, the smell of the fresh sea air, the sounds surrounding him. He loves the warmth of the sun on his body, and the sounds of birds singing (or gulls screaming overhead) causes him to break out into smiles.
People oftentimes do stare or ask prying questions (this is normal); however, we are honest, direct in our answers. We don't shy away from the truth; if people can't accept us or our special child, then we don't even bother with them. Our son (let alone our family) does not need any more aggravation!
Well, we are going to go. Addisyn has another doctor's appointment at two; we are going to go out to eat at Joe's Crab Shack, then head over to Dr. Tooley's office. Hopefully Addisyn will have a good report; we can only pray that happens!
I will be writing about Addisyn (and our other children) from time to time. Take care and may God bless you!
~Love, your new friend, Rena Joy Pickles, Galveston, Texas. )