Friday, October 28, 2011
Who knew that the Thursday would turn out to be so great. The word much more than the day of the week.
Brandi posted this on her facebook page.
"As I'm sitting in line at Cole and Erin's school waiting for them to be let out when I spotted one of Cole's teachers bringing him to me early, probably so her arm wouldn't go limp today trying to hold on to him. Before he reaches the van he says "Hello". I open the door and he says "Hello, How are you?" I look forward to hearing those words everyday. After he got into the van his teacher ask him what today is. He holds his head down with the biggest grin on his face while his arms are going 90 to nothing and says "Thursday "! Can't explain the excitement going through my body. Then she asked him what day is tomorrow. She said "today is Thursday and tomorrow is".......and he said Friday! How awesome is that! He has only been in school for about 2 1/2 months and has learned so much. Couldn't be more proud of my Cole-man! :)"
How could just the words Thursday and Friday be so powerful in the life of a young mother and her young son? The answer is simple if you know what Fragile X Syndrome is. The emotions stirred are only understandable when you have seen the range of effects FXS has on the children and adults that have FXS.
Putting two days together and answering the questions correctly by this little 5 1/2 year old boy is a milestone to be remembered like a 18 month old uttering "mamma" for the first time. Cole has come so far from where he was just year ago. It gives us hope as to how far he may go.
Cole, Cale and Erin are loading up as I type to see their favorite character in person. Thomas the Tank engine at Veterans State Park in Cordele.
Cole loves Thomas, Erin did also when she was 3 and 4. Cale watches Thomas and seems to be more interested lately, but he is more of a Toy Story fan.
Erin knew the 4 or 5 DVDs we had by heart by age 3. You could turn the sound down and she could repeat every word of everyone. She would sing along with the captions.
Cole knew the DVDs by heart at that age as well even though he did not repeat the words. He would be playing with a toy while the DVD played. Just before their was a crash he would turn to the TV then say "uh oh", then turn and play with his toy again. The same when a song was sung on the DVD. Cole would jump up just before the song began, stand in front of the TV and wave his arms and dance to the tune in perfect rythym.
Cale will stop and dance and even sing a few words but he is just not as enamored with Thomas as Cole and Erin. That may change. We will have to wait and see. He is making great progress with his speech and vocabulary. He seems to have a broader
range of interests than Cole.
The only other thing to report is Cole pooped in the potty. While in his swing last week, he told me he wanted down. His words were, "want down Pappy. Have to stink".
I unbuckled him, he jumped down, ran inside, pulled his pants down, sat on the potty and pooped. Marcia had to help with the clean up. He pulled his pants and came back out to the swing where I was with Cale. Marcia came out and announce what had occurred. I told Cole-man good job and as usual he clapped and gave a big smile then told me to push him in the swing. Marcia called Brandi to tell her the news. She was as excited and proud as we were if not more so.
This is the strangeness of FXS. Don't know that he has done it again. Prior to this time he would go to the potty if you ask him, but would not do anything other than pull off the TP and flush the toliet. But at least you know he knows how and we can hope he will decide to make it a regular habit.
I will let yall know how the Train ride went when I get a report.
I wouldlike to thank again everyone who participated, donated or attended the "team up for a cure" golf tournment.
Prayers, Pennies and Perseverance will one day provide a cure, please support research at http://fraxa.org/
Posted by Jim Baker at 7:47 AM
Saturday, October 15, 2011
One year ago I started this chronicle. We found out that our second oldest grandson was a Fragile X child. Now a year later we have two more grandchildren with Fragile X Syndrome. They have had it all along we just did not know for sure, I guess.
Erin, our granddaughter, was tested and she has a full mutation. We are blessed in that she is extremely smart and does well in school except for math. She is shy and vivacious at the same time. She has her moments which we now understand more.
She is such a joy to all us, especially Marcia who always wanted a daughter.
Then this week after being told over a year and half ago that the youngest, Cale, had PDD-NOS but that was all we now know that he has the mutation as well.
My Granny Baker, had six children. She out lived all but one. A still born at 16, lost her fourth son when he was 4, her first and fifth sons in their fifties, her third son when he was sixty.
She told me during a time of great heartache in my life there was never a day without heartache and never a day without joy, just some days the heartache would crawl over the joy. My children and all parents of Fragile X children or parents of any child with a seriously debilitating condition have days when the heartache crawls over the joy. Days when it is hard to hold your chin up and be positive for their children and their spouse. Days when the question is "why me, why my child?"
I once read that you are only as happy as your unhappiest child. This is so true and is one the heaviest burdens of parenthood. When you have a child that is in pain and you cannot ease it the pain manifests itself within you also.
The anxiety of the unknown for our Fragile X kids brings on the heartache. Seeing their happy and loving faces, getting big hugs and seeing them progress in the smallest of ways brings on the joy.
Then I look at parents with children who have other conditions. Cerebral Palsy, MS, Muscular Dystrophy or even worse terminal illnesses. Things could always be worse.
I have said this before but Brandi is a wonderful mother but even more a special person. She has to deal with the imbalance between heartache and joy everyday. She has to overcome the frustration and temper her expectations in an never ending tug of war.
Brandi and Chris have and continue to take the issues before them head on. While it is a heartache for us watch the frustration and anxiety in their lives, the joy crawls over that heartache in witnessing the strength of their character and their resolve to make life as good as possible for their special children.
Posted by Jim Baker at 3:13 AM
Tuesday, October 11, 2011
Marcia and I were blown off the the beach so we came home early. Monday morning we rode to Walmart to get the pictures from the "Team up for a Cure" golf tournament. We had just entered the store when I saw old freind, Larry Jarvis. I waited for him to finish at the pharmacy window so I could speak to him. Small turns of fate are what makes life grand.
If I had not waited to speak to Larry I would have missed what happened next.
While waiting a small hand patted me on the rear and a small voice said, "hey Pappy". I knew immediately it was Cole. I turned to find him reaching for me to pick him up for a big hug. I spoke to Larry and then Cole and I were off for a Walmart adventure.
Cole was there with Brandi to pick up some medicine for his cough. So why Brandi waited at the pharmacy Cole and I left her and Marcia for a tour of the Walmart.
We went to the hunting section where Cole spied the gloves. He loves gloves and picked out a pair of camoflauged ones. We looked at the Camo shirts but there were no small ones.
From there we went through the toy section. Cole pickup and looked at all the Thomas,Cars, Spongebob and Toystory toys and books. He named off the characters and put them back on the shelf. He was not in a purchasing mood I guess. Then we went on a search for Granny.
Granny can almost always be found in the children's clothing section. So that is where we went. She was not there but Cole wanted out of the buggy to inspect the racks, looking for Thomas.
He first went to the rack with the rugby stripe shirts. He has several "Thomas" shirts with those
stripes. There was not any with Thomas on the front. He turned to me and ask,"where's Thomas". Then he found the toy story shirts and the spongebob and cars but no Thomas. He made his way from rack to rack plundering through them just like he was an old shopping pro.
Alas he hollered, "Thomas, Pappy". There was a set of Thomas pajamas much like the ones he sleeps in at home. He was excited for a moment but then continued his search for more "Thomas".
Then you know who showed up. Granny joined the search but I guess neither found exactly what they were looking for.
Brandi found us and she had Halloween costumes for the kids, was still waiting for the prescription. We gathered up the rest of our needs and went to the check out.
Cole and I checked out first. Then Brandi and Granny. Cole came home with us as Brandi waited for the prescription.
We read the Thomas stories and he repeated the parts he knows. We took apart and reassembled the animal puzzles. Of course we went up and down the stairs a few times as well.
Marcia picked up Erin from school and soon there after Cale came running through the back door. They all got a dose of medicine.
Erin watch TV while Cale, Cole and I played with the puzzles. Cole and I read a Thomas story to Brandi and Marcia. Then we went to my chair where Cole went to sleep in my lap as we read the book.
We had to wake him when they headed for home. Cale climed right into his car seat for a change and waved goodbye. Cole got in his chair but was still in a slumber induced semi coma.
All in all it was a nice ending to Marcia and my wet, windy anniversary weekend.
Posted by Jim Baker at 4:30 AM
Wednesday, October 5, 2011
Last Saturday Chris and Brandi, my childrenm and Charlie and Patty Cosey their friends and the son and daughter in law of former Quitmanite, Charles Cosey organized and held a golf outing to raise funds for Fraxa.
Due to their efforts and determination and the good will of their friends and community over $14,000 was raised. They sold t-shirts, cookies, cakes and pies as well as holding raffles and silent auctions.
92 golfers participated and they all said they had the best time ever at a golf scramble and were looking forward to next year.
Several other families and children affected by Fragile X were in attendance as well.
Jan Hinkley and her son Steven and June Lawson and her son Clay Daub were there and were an uplifting force for those of us with younger FX kids.
Of course Charlie and Patty's son, Colten, was there along with our grandchildren, Erin, Cole and Cale. Erin has just be diagnosed as having a full mutation.
Cole and Cale were my shadows all day as we visited with people attending and rode the golf cart on the course with their Nana, Barbara Rozier. Mema and Grandaddy Rozier were there as well and took in most of the gold at the first hole from under the Oak Trees.
We were provided with a perfect golf day from above and much love and happiness from the golfers and volunteers. A special thanks to Aunt Becky who along with Brandi photographed each golf team.
I would love to name every volunteer and golfer but alas and thankfully their were to many for me to remember them all.
Thanks to all that participated in person and in spirits. Prayers and Pennies are needed and in that order to make the cure a reallity. Thanks for both.
More to come, but Marcia and I are off for mini aniversary honeymoon. Number 41.
Posted by Jim Baker at 6:23 PM