THURSDAY, who knew?

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/

One Year

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.

Hey Pappy!

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.

Just a quick note tonight.

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.

I want to go home in Daddy's truck

Sometimes the smallest of moments give the greatest amount of hope. Friday night produced one of those moments. Cole, Cale and Erin came to the house while their Mommy and Daddy went out to celebrate Brandi's Mima's birthday.

Of course we went through the normal session on the swings with Cale and Cole and then went in to have supper. Supper was followed by Cole carrying his new Thomas book and "demanding" it be read to him as he holds like his teacher would. Cale was playing with the cutout puzzles and watching "teebee".

Cole showed Marcia how he exercised at school. He got on the floor and said "exercise" then laid no his back and made like he was pedaling a bike.

Cole and Cale could no doubt solve the nation's energy crisis as the expend their's and ours nonstop.

But to the small moment. Brandi and Chris return around 8 and soon after one or the other said it was time to go. Saying something like get ready to go. Well Cole had arrive at 5 or so with his mom in her van and his Dad had arrives at 6 or so in his truck. Chris's truck is parked outside the privacy fence. Cole has not seen the truck.

When someone said, "lets go", Cole spoke up clearly and concisely,"I wanna go home in Daddy's truck. Don't sound like much of a moment much less great until taken in the context of Cole's Fragile X.

For Cole to want to go home in daddy's truck, he had to remember that he came in Mommy's van an hour earlier and Daddy arrived later. He then made and assumption.

That Daddy came in his truck.

Brandi and Chris got the test back on Erin and it was positive for fragile X. Erin has not shown any signs of developmental disabilities, but she is shy and has high anxiety in some situations. Now that we know some of the reason we all can approach situations differently with her.

She is still sweet and my Pill as I call her.

Pride is not a word I often use nor an emotion that I often display. But I am so proud of my children, Brandi and Chris. They have given a huge responsibility and challenge. They are meeting it head on.

Baker, Cole Baker

What is your name? Baker,(pause)Cole Baker is the answer in a Bond, James Bond sort of manner.

I have posted in the past that Cole-man would not say his own name. Well now he does and it is a Bond like manner.

He has seemingly always been able to call everyone by name, even answering what is your Granny's name with Marcia, what is your Nana's name with a broken Barbra. And the name he seems to like to answer with the most, what is your Papaw's name.

He surprised me this past weekend as we were asking about different names from the Thomas characters to Cars to his new love, Toy Story. After a few questions of what is his name running from Woody, Buzz and Rex, Cole ask me, "What is Papaw's name?"
Followed by a "Kirk" and then a big smile and look of accomplishment. He returned to asking and answering "what is Papaw's name?" Everytime with a big smile as he said with voracity and perfect enunciation, "Kirk".

Cole and Erin were here with us for Saturday a week ago when we had a visit from our oldest Grandson, Andrew. Erin and Cole were both glad to see him and their Uncle Ben as were Marcia and I. Erin, Andrew and I made plans for a fishing trip on his next visit.

Back to Cole. He is one perpetual motion machine. He loves to play and he loves to "read" his books. He almost has a book in his hand unless he is swinging in beloved swing on the carport. He has pretty much memorized his three Thomas books and his Toy Story book. He intently listens so he can chime in on the words he loves to say.

Top Hat aka Sir Topham Hat has long been in his vocabulary. Top Hat is all he would say when ever the character appears in the video or on the pages of his book. Well, now he is pronouncing it "Topham Hat" still no Sir but a well enunciated Topham Hat.

Now back to that swing. Cole loves to be pushed as high as the swing will go. Mostly I give him a few good pushes then sit down in the rocker and give him a boosting push as his arcs become shorter and shorter. No longer will that do. As I sat down in the rocker from swinging him, he shouts "get up Pappy, stand up Pappy". All this in one sentence. Well I had to get up and send him sailing again. As I headed for the rocker Cole shouts again, "No, Pappy standup, push me".

You have to really understand how much a leap in communication this is for Cole and me. So, I jump up and push again. This time I sit down even though I am being commanded to "stand and deliver" so to say. I explain that Pappy is hot and tired and I will push him while seated.

Cole allows me to push him one time from the seated position then declares "I want down, Pappy". Which is not new and so I rise to slow the swing and release him from the safety straps. Well, Cole looks me in the eye and says," I want to swing, push me".

Cole has become devious, he has baited his poor Pappy. He has learned how to get me out of the chair and receive the push that will send him arcing high into the air back and forth in his swing... I guess I am an easy mark, you think.

I wish you could all have a visit from Cole-Man. I hope that some will visit him at his golf tournment Friday, September 30th at 1:00 pm at the Francis Lake Golf Club
in Lake Park. You can contact Cole's dad Chris about the Tournament here chris@redoxchem.com.

Thanks for indulging a doating grandfather and thanks for your support.

Cole is now in school. He has completed three days. I picked him and Erin up from school Friday afternoon. When I pulled up to the pickup area one of the teachers called for Erin Baker, but up popped Cole first dragging Erin up by the arm, she had a death grip on him, practically leaping over other kids. "Jim, Jim, Pappy he hollered as he climbed in the open door.

He went directly to his booster seat and Erin buckled him and off we went to visit Granny on the way home.

"Granny, Granny he called as we approach Marcia's office, it just up the road on the way home. "See Granny" Cole called. He knew Granny would have a snack. We stopped and had a short visit, heading on home.

I just knew he would want to get in the swing when we got there. We pulled in and I got him out of the seat. He started toward the swings to my dread. He turned and said "its hot Pappy". Then he went up the back steps, slung open the screen door, opened the back door and said "come on Pappy, want Coke".

Guess what? He got him some Coke and I sighed with releif that there would be no swinging session in the 102 degrees heat. No sooner than I had put ice in the cup he had taken his stool out of the cabinet. He has a little fold up stool he uses when he washes his hands in the kitchen sink. He went directly to the pantry, climbed on the stool and pulled down the Chex Mix bag. "I want chips" and so we had Chex mix.

Cole and Erin then went into our bedroom and turned the tv on to Nick. Erin sitting in the chair and Cole perch up high on the end of the bed with his cup of Coke and cup of Chex. I-Carly didn't hold his attention long before he was asking for a Thomas DVD.

I went to the DVD stack and pulled out one. He took it, looked at it and said "Thomas workshop, want Treasures". These are the things that amaze and puzzle me about Fragile X. Cole can't read a lick (I think) but he knows which DVD is which and he has several. He looks at them and calls them by title. Friends help out, Milkshake, Treasures, Workshop and others I can't remember.

He also has several Thomas books with illustrations and one or two lines of text on each page. Although he can't repeat the complete line on each page. He knows what line is on each page. And he has three or four books that can correlate the words with the illustrations. But then on the other hand he still can't or won't say his own name.

I look at these things and then remember that at age 3 he hardly said more than a dozen or so words. Now he is five and knows all the charaters of Thomas, Spongebob, Toy Story by name. He follows the stories, laughs, sings and talks to the DVD. He has come such a long way.

He still comes to my chair and says " lap, Pappy, lap". Use to be to climb up and take a nap. Now he climbs up with his book and "reads" to me and then tells me to read to him.

The bottom line. He is learning. Learning differently from "normal" kids but he is learning.

In a previous post I mentioned that Chris and his friend Charlie Cosey are organizing an golf tournament to benefit FRAXA. Things are starting to come together.
Several sponsors have been established and several teams have already signed up.

Chris and Brandi along with Charlie and Patty are hoping to make this an annual event and establish a south Georgia Chapter of FRAXA. They are working hard at it and I want to thank those who have offered and given support.

Here is a link to the Team up for a Cure sight.

http://www.firstgiving.com/fundraiser/chrisbaker/teamupforacurecharitygolfouting?utm_medium=share&utm_campaign=share&utm_source=at-facebook&utm_content=eua#.TigsS4JYpM1.facebook

Here is a link to FRAXA.

fraxa.org

Thanks for visiting and as we say in the south, Y'all come back, ya' hear.