Saturday, March 24, 2012
A good friend ask me how Chris, Brandi and the Kids were doing this week. He expressed how blessed he was that his family was healthy and doing well.
He said he knew that Chris and Brandi had a lot on them and I agreed. They do, raising three children with special needs. But I also had a moment. Erin, Cole and Cale are by and large healthy. They have the normal issues with runny noses and upset tummies but they are healthy. They run and play enjoying each other's company. Some of their skills are behind and may always be behind but they are physically healthy.
Their developmental disorder, Fragile X, is a condition not a a disease. I hope that I never look at them as not being healthy again. I hope that the world will one day not look at them as if they are unhealthy.
Cole and Cale have limitations but we all do. The greatest impairment to their chances of living a long and happy life are the attitudes of the people who surround them.
All of us "normal people" have had contact with people, children and adults, which have physical or mental limitations. I have and I recall that at times I was not as understanding or as sensitive as I should have been.
But as I remember those people did not chide me for the shortcomings of understanding and sensitivity I displayed.
My friend is truly blessed with a great family, but so are we.
Cole came to visit me at work Friday. He had been sick with a tummy ache Thursday morning and I kept him for a few hours while Brandi had Cale at the dentist. He was so pale and lethargic. He laid in my lap not even wanting to watch Thomas and Big Belle. He wafted in and out of sleep only looking up at me with weak gazes.
He finally ask for some "coke". After a couple of swallows he began to recover. He was asking to watch his DVD of Thomas and all was well. His Mommy came and he was so glad to see her. He looked at her and uttered a weak "hey Mommy" and then gave that sweet little smile that will melt any heart.
A smile that will chase the clouds away and bring out the sunshine. And just when you think he cannot be any sweeter he does it again. As he was leaving the shop with his Daddy, he rolled down the truck window and smiled as he said, "I love Pappy". Cured any melancholy I may have had.
You will notice the original art at the top of the page. These are just a few of the paintings of Cole and Cale. They are simple fingerpaintings but Cole and Cale enjoy doing them.
If you would like to support research for Fragile X treatment and hopefully a cure you can purchase one of Cole or Cale's artworks by sending a check for $5 or more made out to FRAXA and a self addressed envelope to:
405 Plantation Drive
Quitman, Ga 31643
Your artwork will sent to you and your donation will be forwarded to FRAXA. You can find more information on FRAXA at fraxa.org
Posted by Jim Baker at 5:04 PM
Friday, March 2, 2012
I walked up the stairs last night to peak into Marcia's upstairs lair before going to bed. When I open the door the first thing I saw was the light switch. The light switch was not so special just a white plastic plate. But it was surrounded by hundreds of dirty little smudges. Finger prints from the little hands of Cale and Cole.
Funny how sometime the smallest things bring back memories so quickly. The first thing to flash in my mind when I noticed the fingerprints was of the french doors in our home on Gordon Street. The kind with rows of glass panes. The bottom two rows were always covered in finger prints and smudges from Jay standing and pressing his lips against the glass and then giggling. Don't know what about doing that made him laugh so but it did. I remembered being unable to clean the glass when we moving. I am sure the new owners cleaned the glass but somehow I imagined or hoped those little fingerprints and smudges would remain forever on the glass.
Now I have fingerprints around the light switches up and down the stair and everywhere else. Some of Cole's first words were "on" and "off" as he would stand and click them up and down. We didn't know then that he was a Fragile X child. But we still excited that he was beginning to speak.
Needless to say all the fingerprints can't stay but some will certainly become just like the fingerprints on the glass panes, not memories but reminders to appreciate the time we have had with our children and grandchildren. Never to take for granted tomorrow will bring the opportunity to fulfill yesterday's dreams.
Seems life is continually re-arranging your dreams, opportunities and possibilities.
Enough Grandpa philosophy .
The "Kids" are progressing. They are all learning and growing. Erin has just completed playing in a basketball league, Cole will soon be completing his first year in school and Cale will soon begin.
Cale's vocabulary has really grown along with his stature. He is a solid little 4 year old almost a head shorter than Cole but only a couple of pounds lighter. Cale is no doubt the baby in the family he has learned every trick there is to get attention turned his way when he thinks it is lacking.
Ninety percent of the time he is sweeter than good cane syrup. But when he thinks he deserves more attention he can put on an academy award performance to express his displeasure with the situation. I have never seen a child that could cry in such agony with a smile on his face. It is almost sinister at times. He will run and cling to me hiding his face crying to beat the band all the while with a big smile because he is getting what he wants, attention. As if he never receives any at all.
He has learned to even manipulate his big sister, Erin. He has her at his beck and call at times. She is very protective of him and mothers him. Adding one more to the list of "child spoilers" on which I don't appear!
Of course anyone who sees him smile and make his little laugh can easily be added to the list. It takes great will power and fortitude to resist.
On a different note Chris and Brandi along with their Friends will begin organizing the "Team up for a Cure" golf outing in the next few weeks. It was a great success last September. I am sure that Charlie and Patty Cosey will be involved. I know they all want as many families of Fragile X and Autism Spectrum children as possible to be involved. But they also need participants in the golf outing as both players, volunteers and sponsors. So keep "Team up for a Cure" in mind and more information will be coming in the weeks ahead.
Posted by Jim Baker at 4:17 AM