Showing posts with label disabled children. Show all posts
Showing posts with label disabled children. Show all posts

Monday, March 9, 2009

By any other name...


Mysterious Child's Mom writes again.


Last summer I bought several rose plants. My intention was that I would have climbing roses to cover a trellis and make some shade in my yard. One of the roses I bought was planted for several weeks before I realized something was wrong.
Well, not wrong exactly.. but NOT what I had expected.

First clue, a bud opened and a flaming red rose came out... it was supposed to be white. The rose itself was small and there were many of them... my climbing rose was supposed to have large, strongly scented roses... this one had no smell.

Over time I realized that it wasn't a climber at all. It was a bush, low to the ground and fat. NOT what I expected, but I've gotten so many beautiful roses from my unexpected surprise. I couldn't expect it to grow up the side of the house and produce shade for me in my old age. I had to adjust my thinking about this rose.

Why does anyone bother to plant Roses? They are thorny. They need to be pruned. Though beautiful, they attract bees and did I mention they're thorny?

We buy them, because they are so beautiful, some are fragrant, some are long lasting, all have thorns. All need some care and pruning.

How is it with Roses .. we can overlook the thorns and focus on the color, the smell, the graceful flowers and somehow work around those thorns?

Don't we come prepared with armored gloves, sharp snippers and fully charged up on coffee? Don't we expect to have to face the thorns? Don't we just assume that will be part of the raising of a Rose?

My son is as sweet... even by a different name. In a way each of my children are Roses...
Some have a nice fragrance.
Some have beautiful color.
Some are graceful.
ALL have Thorns and need a little pruning.
Some times we don't get what we expected. Maybe not what we planned for, but a Rose is still a Rose ... thorns and all...

I'm gonna try to keep focusing on the flower...
not the thorns.

I'll try to prepare myself to deal with the maintenance of my "rose" by bringing in the tools necessary. I'll try to be well rested and well advised and patient.

Because Roses are lovely.

Sunday, March 8, 2009

The Mystery Begins....


Mysterious Child's Mom writes again.

The perfect baby boy, didn't come home with us. He had changed. It took us some time to figure out it wasn't a flu or being tired or normal baby issues.

We started to notice that he wasn't trying to speak. We use American Sign Language at home (ASL) so we thought he was just doing well at that. We noticed he couldn't walk up or down slopes. His ability to understand when he was dizzy was somehow limited to when he'd spun so long he couldn't even lift his head. He had a strange facination with tactile surfaces... licking screen doors, phones and such. He reacted in panic to other feelings like vasaline or mushy peas. Gagged on foods that were soft and wet.

He loved his soother (nuk) and when he was upset he calmed immediately with aid of it. He dragged his blanket everywhere for security and it seemed to have such drastic calming effect.

All of these "quirks" started to poke and prod at our hearts. Slowly, dawning on us, maybe there was something different about our baby boy. Parents don't want to entertain that thought... so we made excuses. After a time, we started to look into what the "quirks" were from.

A new path, a strange place, the beginning.

Saturday, March 7, 2009

How did this all Begin?



We've come so far that looking back is to remember how hard we tried to have this child, a son. Infertility had been a long standing part of our quest to build a family and stood in the way of "choosing" when and where children would be added to our home.

When our beautiful middle child, Ben, was added to our family we were more than excited. He had beautiful blue eyes, full, chubby cheeks and a wonderful smile. He truly was the "son of my joy". He was the perfect baby. He ate when I fed him, he slept when I laid him down, he was content to play when it was time for that.
He was healthy, happy and beautiful.

When he was 8 months old, I discovered that I was pregnant again. Both thrilled and shocked, I knew this baby boy was going to be a great brother to my coming child. It wasn't long before fear threatened my confidence in how my next child and Ben would relate to each other.

Ben was 18 months old when he developed a strange and unexplained rash on his arms, legs and face. It was raised and purplish red, wart like. We took him to the hospital 3 times before they took him in to admit him. He had a fever that was out of control and he was very lethargic.

Meningitis was whispered in the halls. We were sent to isolation together with my new baby boy who was just days old. No one seemed to know what this was. They eventually ruled out Meningitis and controlled his fever after several days. In hind site, I've been told it was probably some kind of virus. Those days in the hospital were days of change, none of us could foresee.

The child that left there, was not my perfect baby anymore. He was changed. A new part of our journey was beginning.