Gare-Bear’s Chiari Journey

Gare-Bear & Daddy!

Gare-Bear & Daddy!This is my little Gare-Bear, Butter, Brudder, Gerrit-miester, and now known mostly as Guy. (We have an epidemic of nick names for everyone around here!) But his given name is Gerrit, after his Dutch Great Grandpa, who is 100 years old!

During most of Gerrit’s toddler-hood, he was known as Gare-Bear!

Here, he is two years old, after we had just recently moved to Peachtree City, Georgia.

Four months before surgery

At this point we did not realize anything was wrong with our Gare-Bear. He was a happy (most of the time) and very bright little boy. He talked extraordinarily well at a very early age and seemed to most people that met him to be a charming little man!

Although… early on, when he was under a year… I thought at times that I had given birth to the devil himself! He seemed to have horns, a pointed little tail and a pitchfork, and I believed he was out to slowly kill me until he was maybe fifteen months old. He was the most independent and sensory sensitive child I had ever known. (And I have known quiet a few!)

He only slept for two hours at a time in the night. I had to pad his crib with several layers of blankets and then a sheet…and it had to be a flannel sheet…the cotton ones were too loud. (When his fingernails scratched across the cotton sheets it made a noise.) He had to have a heating pad put down in his place when I picked him up to nurse him, so that when I placed him back in bed it was still warm… that way he wouldn’t startle awake and start screaming again. He was very sensitive to light, and would cry if it was too bright in the room. And he woke up if you even breathed in the same room that he was sleeping in!

One of the most frustrating parts of all this for me was that people, people I loved and still love, didn’t believe that he could possibly be that sensitive to all the five senses. So I got lots of crap advice… like, vacuum when he’s sleeping to get him used to the noise, put his crib out in the middle of the action and then he’ll get used to all the noise and sleep through it, maybe you are the one making him sensitive by trying to keep the house too quiet. You need to lighten up. You used to be fun. etc…. Let me tell you something. I would have given a large number of internal organs, a couple of good toes and my right thumb to figure out how to make this baby sleep. I was a walking straight jacket recipient. Some days I told God it was either him or me. But whichever You pick, do it quick.

Another thing about Gerrit when he was little is that he was stiff, ridged, and arched his back when he cried. He never conformed and cuddled like my older one had. (and two since) I just figured it was personality. For crying out loud, he was the exact opposite of my first child… so I thought he was just being his own little independent self!

Well, I was validated a year or so later when a doctor diagnosed him with Extensive Sensory Sensitivity. And to be honest… I am not a technical person (oh my, what a shock!) so, if there is a better medical term than that… well, then, I forgot it. Google it if you must. I know what it is by experiencing it. I don’t need the technical term to know it’s real. I’ll just forget it again… but thanks anyway!

At about one and a half, it got easier. Not the sensory stuff so much, that somewhat continues to this day, but the constant crying and fussiness did. He seemed much happier and content. And he began to sleep better at night. Yipee! I also began to recover from sleep deprivation… just in time to have another baby!

Right after Gerrit’s second birthday, he took a tumble off a porch and hit the back of his head. It was very scary for those that witnessed it. (Thank God it wasn’t me!) But all seemed just fine after ice for Gare-Bear and a Valium for Grandma!

Just a few short months later… we would find out that maybe that fall actually saved his life.

to be continued…

Be sure to go to my pages on the right hand column for the continued story of Gare-Bear.


4 responses to “Gare-Bear’s Chiari Journey

  1. Dad


    You are a great story teller!!!
    This is all I have read so far.
    Keep it up and I’ll keep reading.

  2. Nancy Howell

    This is really good, and told with a mother’s tenacious love and for her child. Will be very helpful for those suffering with the same thing, and very interesting for the rest of us. I’m anxious to read more!

  3. Pingback: Gare-Bear…his journey… « Real Life On My Planet

  4. Sorry but I really cant stand to read/hear about anything bad happening to a child. I hope the lil man is doing better now, I’ll keep you guys in my thoughts and prayers.


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