Previous Challenge Entry (Level 1 – Beginner)
Topic: Touch (the sense of touch) (08/05/10)
TITLE: Baby Jake
By Frankie Conar
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When I heard him cry for the first time, he sounded like a cat mewing, and red flags went up in my mind. I had heard of a syndrome where baby cries sounded like cats, but I couldn’t recall the name. I spoke with the doctor and he assured me baby Jake was fine. I prayed the doctor was right, but in my heart I knew something was wrong. I didn’t have the heart to mention my fears to my son that day, he was walking on cloud nine.
As time went on, other differences were noticed. He was like a rag doll, Jake could not hold his head up and seemed to have very little control of his body movements.
My daughter had her third child a month after Jake was born, and the two little boys were often together. As Jamison grew he could roll over, reach for things, pull himself up, sit up, crawl and do dozens of other things, while baby Jake just laid there and flopped. Jamison would look toward noises but Jake never seemed to notice. Jamison could let out an ear piercing scream and Jake rarely made a sound.
The first diagnosis was failure to thrive and muscle hypotonia. Several times a day Jake needed to exercise and be brushed with a soft brush to stimulate the nerves in his skin. Trying to get him to eat was an ordeal, at one point, it looked like a feeding tube was the only option. The next issue found was deafness; Jake was ninety-five percent deaf in one ear and forty-five percent in the other. He could hear loud sounds but they were muffled at best.
There have been various test trying to determine his problems, so far, the doctors at Vanderbilt are just calling it Jake Syndrome. Mentally, Jake is fifteen months, physically he’s like a three year old. He will be turning six this November, he has learned to walk, or should I say run, and that is a miracle we never thought we would see. He has outgrown the failure to thrive syndrome, and is now at a healthy weight though he is still small for his age. With the help of hearing aids he can hear sounds, but we don’t know to what extent.
The fastest way into Jake’s world is through touch. He is a very happy child, always smiling, and is a ‘snuggler’. When he’s over stimulated, holding him close and rubbing his back or arms calms him. He has touched our hearts and brought joy, love and hope into our lives.
As he grows, he’s noticing that his younger sister can do things that he’s unable to do. He tries his best but often fails. Sometimes I notice the longing in his eyes as he watches his sister and cousins. I do my best to see that he is able to slide, swing or do what the others are doing. And when Jake accomplishes something, or thinks he has, he is thrilled; his whole face lights up and he giggles nonstop.
When my husband and I talk about Baby Jake, and the tough road he has, we say, ”He’s just happy to be”. That sums up Jake’s attitude toward life. Whatever comes his way, he faces it with a smile and tries his best. Isn’t it a pity that we all can’t be ‘just happy to be’ like Jake?
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