Recently in the Valdosta Daily Times Rant and Rave section a reader posted a rant concerning a child that was screaming in a store and the mother was ignoring the child's behavior. The ranter seemed to be taking both displeasure at the behavior of the child and the behavior of the mother. The ranter went on to give advice on the discipline need by the child. Offering that such a poorly behaving child should not be out in public. In a subsequent rant posted by another reader it was suggested that the child should be put on a leash.

A year ago I probably would have agreed with both ranters. "Children should be seen and not heard". There are children with behavioral problems that can be addressed with the usual disciplinary actions. There are children with developmental disorders that have behaviors that cannot be addressed with the same methods. I have learned not to be so quick to judge.

If your children are grown or if you never had children at all it is easy to draw quick conclusions as to "what I would do if that child was mine". Think of it in this light. That child needs support from the grown ups around it. If we all grow old we too will seek support from the "grown ups" around us. Remember the old addage, what goes around, comes around.

That said,

Where do I start? I want to keep this interesting to everyone that takes the time to read my ramblings about my two little buddies and their big sister, AKA "the pill".
Erin, Cole and Cale were overnight guests Friday. As usual they push Marcia and I to our physical limits.

Having all three, Erin, Cole-Man, Cale, changes the dynamic. When Erin is here by herself she is completely independent of Marcia and I. She wants to do everything for herself. Throw the two boys into the mix and she has to be in the middle of everything. Telling the boys what and what not to do, telling Marcia what they want and don't want. She trys to mother the boys and protect her status as NO. 1 at the same time. It is sometimes humorous and sometimes frustrating. I truly feel for her Mom, Brandi. Forty eight hours of Erin's struggle to be both protaganist and antagonist wears me out. But still as soon as she and the boys leave I miss them all.

That aside, Cole played hard from the time Brandi and Chris dropped them off till he went to bed. Driving his push car, trying to ride the trike and swinging in his swing. They all went upstairs around 8:30 and had their bath and dressed for bed. Marcia sleeps upstairs with them when they are here and I sleep downstairs.

About 2:15 AM, I hear this little voice. "Pappy, Pappy, where's Pappy". It is Cole-man. Marcia puts him in the bed with me and goes back up stairs. Cole talks and jumps and gets out of the bed. Turns on the TV. Then he wants to watch "Thomas".

"Thomas is on the DVD in the den. So I grab a blanket go to the Den, get in the recliner. Cole turns on the TV puts "workshop" in the DVD and climbs in my lap.
Then he says,"need pillow, need pillow Pappy". I tell him "well go get a pillow".
He climbs down, goes to the Bedroom and returns with two pillows. Gives me one and crawls in Marcia's chair with the other. I am thinking good he will go to sleep and then I can put him in the bed. Right!

Once he is in Marcia's chair, he calls out,"Pappy, covers, covers Pappy. I get up and give him a comforter from the couch. Again thinking in a matter of minutes he will be asleep. Wrong!

He climbs out and retrieves his "Thomas" book. Climbs back in my lap. "Read Pappy, read. He points to the first page and smiles as he say "click clack, click clack" the words on the first page. He turns a few pages and points, "Hiro stuck in mud" then turns the page and says, "uh-oh Spencer" then turns a page or two. "Hooray for Hiro" he says as he points to the page. We repeat this for a few more minutes, then he changes the DVD again. "watch splish splash" then watch "Thomas bration"(celebration). This goes on until about 5:15 before he finally goes to sleep in my lap and I carry him back to bed where we both sleep until we are rudely awaken by his "Granny" at 7:00 AM.

Needless to say I was not a bundle of energy for the rest of the morning.

Back to the book and the pages that Cole recognizes. Don't know what it is he recognizes that allows him to repeat the words printed on those pages but he does put the right pages together with the words. Not only that he uses the right inflections on the words in the context of the story. He raises his eyebrows and draws his mouth into a circle and takes a deep breath as he say "uh-oh" then claps and bounces as he says "hooray for Hiro".

Doesn't sound like much for a five year old, but it is light years from where he was a year ago.

Then there is the other side. He don't like bandaids. Marcia put a little ointment on an insect bite that was red. Then she put tried to put a bandaid over it. We got the bandaid on, but he wanted it off. "Take it off, take it off". Then we struggled to get it off. Then he wanted the one Marica had put on Cale off also. He tried to take it off Cale's leg.

"Band aid off, Cale. Bandaid off Cale. Cale don't want it". As soon as we took Cale's off Cole calmed down and everything was fine.

Cale is making progress as well. He is talking more and asking for the things he wants and wants to do with short phrases. He still is hard to understand at times but he is definitely putting words together. Cale is not as attracted to the DVDs as Cole. He plays with toys and puzzles more. He loves to climb. He is constantly on the kitchen table or our bed. And he loves to emulate everything Cole does. If Cole swings, Cales swings. If Cole gets in the "car", Cale gets in his car.

I try to get each of them to count when they are here. In the swing I get them to count 1,2,3 before I push swing. Cale is counting up to 6 on his on in the swing but as he went up the stairs on his way to bed he counted the stairs 1,2,3,4,5,6,7,8.

They are learning and every little bit is a blessing.

I will go now, but I will ask that you consider supporting a children's charity.
There are many and I hope that you will visit FRAXA.org. FRAXA support research into causes and treatments for FRAGILE X. FRAGILE X is the genetic disorder that affects our Cole-man. Below is a link to an article on drugs being tried to correct Fragile X syndrome. Again Thanks.

http://www.latimes.com/health/la-he-fragile-x-20110501,0,7738702.story

PS: Congratulations to my friend Austin Lodge and his bride Keri.

Cole and Cale were our guests Friday night, giving us need for some of those energy boosting drinks. They are so energetic, but I guess all 3 and 5 year olds are. From the moment Brandi opens the van doors it is a chorus of "Granny, Pappy, Granny, Pappy and then directly to the swings.

They both buckle them selves and then applaud their accomplishment. Then it is " Pappy,swing me high" from Cole. Cale waits patiently for his turn, not. He is bouncing up and down,"swing, swing". Cole is not satisfied with his altitude until he is able to kick the blades on the porch ceiling fan. Cale is not as much a daredevil, he is satisfied at a lower height.

After a few minutes Cole calls out " I want down, down, Pappy" and like and echo Cale repeats,"want down Pappy". I as Cole what he wants to do. Car, drive car followed by the echo, Cale. Typical little brother wants to do everything big brother does.

The load up in the little "Fred Flintstone" cars. Cole will get them lined up and says 1,2,3,go. Down the driveway they go, their little legs taking short steps to propel the cars. Then at the gate Cole will climb out and begin to push the car back to the porch. Guess what the "Shadow" does. Cole jumps on his trike and guess what the "shadow" does. The poor little "Shadow" forgoes a tremendous amount of supervision as Cole mimics his absent sister, Erin. They both are well supervised when Erin is around. It is amazing though how much of Erin mannerisms and posture Cole exhibits when she is not here to be "in charge".

Last week I wrote of the increase in Cole's vocabulary and how it continues to grow. Although it has only been a week since he was last here his use of words in phrases and short 3 and 4 word sentences has grown miraculously. He ask me to "kiss his hurt" and "Pappy, I want some ketchup" followed by the same for "ranch".

These boys love ranch dressing. They eat it on every thing from green beans to pizza.

Cale's vocabulary and speech is increasing as well. He speaks so softly you have to really listen to understand what he is saying. He brought me my glasses and handed them to me saying, "Pappy glasses". Then "get in Pappy's lap".

I am trying to catalog the new words and phrases for both of them to get a real sense of the changes.

It is not only their ability to communicate verbally that is growing but their problem solving abilities. Cole is doing better with the cut out puzzles and Cale does real well with the puzzles.

I put one of each color building block on the floor, red, green, blue, purple and yellow then ask Cole to bring me another block. I made him put the block with the same color block and by the third set he was matching the colors on his own. But then Cale want to show off his throwing arm and style, so I gave up for the time being on a repeat.

Then after breaking up throwing practice Cale grab my arm,"lay down, lay down". I said I will if you get me a pillow. He said "pillow" or something close, then ran to our bedroom and returned with a pillow and pulled me to the flow. Once on the floor I became the trampoline again. They both jump on and over me until I mention sponge bob cookies.

I got the cookies, took the clothespin off the bag and let them help themselves. Cole took the bag and they ate out of it. Cole loves to control the number of cookies Cale gets it seems. But then something happened. I had been showing Cole how to put the clothespin back on the bag the last time they were here. Well he grabs me by the hand with the bag of cookies in the other. Pulls me to the pantry, opens the door and pointed up and said something I did not understand although he said perfectly clear.
He pointed and said "clamp". I thought he saw something in the pantry he wanted to eat. He points again and says,"clamp, Pappy, close it". He was asking for the clothespin but calling it a clamp, which a clothespin is. I took the clothes pin and ask him, this. He responded "yep" "clamp, pinch it". I gave it to him and he proceeded to put it on the cookie bag and with a little help which he ask for, "help, me, help me", we got it on the bag. He then told me "put it up" and I did.

We have no idea where he got the word clamp from much less how he correlated it with a clothespin. But he did.

He is forever toting his Thomas book and asking Marcia or me to "read it". While I lay on the floor with Cale and Marcia was in the kitchen, I heard Cole behind me. I rolled over to see him in Marcia's chair where she reads to him. He was sitting there with his book open, turning the pages and naming the characters from each page. Something we had never seen him do. Then he say "one, two cats". There is one page with two cats in the illustration. He went from front to back pronounced "the end" and then started again.

Within a matter of minutes he had exhibited behavior we had never seen before used words he had never used before. For those of you with FX children you have to know the elation and emotion that runs through you when things like this occur. To anyone reading this without FX children, I hope you will try. Even though Cole is 5,it is the same feeling as a 1 year old beginning to walk and the first time they say Mama or Daddy.

Well, I have rambled on here enough. This Autism Awareness Month. Autism, much less Fragile X, was not anything I gave any thought to a few years ago. Now I do, I hope that my ramblings will have some positive effect on the way children and adults with development disorders are viewed by those not immediately touch by their lives. I hope that people will remember they are not only someones' son, daughter, brother or sister, they are somebody, period.

Thanks.

This blog has been about my grandson Cole, but I now must also give his little brother Cale more attention. Cale is 3 1/2 and is just as full of life as Cole but he also has learning disabilities. He only say a few words and only a few phrases and you have to listen to here those. On the upside he learns tasks pretty rapidly, understands things you say and ask him to do. He is such a cute little boy with a smile that will melt you.

He has a temper and will throw a little tantrum now and then. But he always looks to see if you are reacting the way he wants and is pretty soon smiling again.

Cale and Cole play well together and Cale wants to do everything Cole does. If Cole wnats to swing, Cale wants to swing. If Cole ask to get down, Cale immediately let's you know he wants down as well. They ride in their little cars and on their trikes.
They sometimes have little tiffs but mostly share their toys.

Cale is not as drawn to the Television and DVDs as Cole. Cale would rather play with the vacuum or climb up on the tables. He is in constant motion. Cale shows more ability to figure out the puzzles and recognize colors than Cole. Their abilities are different and we can only hope that Cale will continue to make progress to catchup.

I have been keeping up with Cole's vocabulary and his use of phrases. They are really increasing. He is up over 200 words he uses and more than 30 phrases. Cole will repeat almost any word you say, he just does not use the words other wise. He can also use a word one way but not another. Most notably his name. He will use the phrase "Cole's turn" when playing. You can ask him if his name is John Baker, he says no. You can ask him "what's your name" and barely stammers something out. Cole being unrecognizable and Bake barely so. An effect of the brain connections again.

He has a new Noah's Ark book. Cole loves books, both to read from and to attempt to eat. He will sit in my lap, holding the book and turn the pages. I point out the elephant and he would repeat elephant, then giraffes, then lion and so on. I could then ask him to find the elephant or lion or giraffe and he would turn the pages until he found the animal I ask him to find. All the time saying "find it, find it". But he does not say the animal's name without prompting.

I assume this is due to the connections in his brain being incomplete and not be able to relay the words back to be spoken. I am still learning about FX.

Cole can count to ten with the exception of 4. I watched him through the kitchen window as he push Cale in the swing. He would say "count Cale". Then he would count to Cale. One, two, three, five, six, seven, eight, nine, ten. Then clap and holler "yeah!!!"

We are working on Cale, he is up to four and then he begins to laugh.

Cale is pretty much the same way. He will repeat words though not as many. Cole gives commands such as "Pappy, come here", Granny sit here", "Turn off the light". Cale does not yet. When playing with the cut out puzzles, I will give Cale a puzzle peice, say an fire truck. I will say fire truck and he repeats that although it is not that well pronounce. But then he will ask, "where does it go?" I always answer "I don't know". He then puts it in place and says, "goes here". Of the several puzzles he has he learned to put the pieces in place with just one or two tries. That is very encouraging.

They come to stay with us every couple of weeks and most every time Marcia and I can recognize things, some small and some significant, they both did not do on their last visit. One thing they both do on every visit is make their Granny and Pappy very happy. They run to hug our necks, give us kisses, sit in our laps and make us laugh.
While I wonder what life will be like for them in years to come, years that I may or may not share with them, I am comforted by their overall good nature and desire to learn.

I mostly pray that the world will learn to accept them as they are and perceptions will change for children and adults with intellectual challenges. It is easy to put children with special needs in a good place in your heart, I just hope that they will not outgrow that place as they become adults with special needs. After all we are all God's children, I have to believe they have a special place in his heart.

Please support a children's charity.

Had a great weekend with Cole, Cale and Erin. They are a handful for Marcia and me, but is a labor of love. Most grandparents have used the old cliche, "glad to see them come and glad to see them go". I guess I am the same until I realize how quiet the house becomes and how much I miss their laughter, little hands tugging me to the backdoor to go "outside".

My carrying on here has been about Cole and FX with little mention of Erin and Cale, Chris and Brandi's other two children. I by know means mean to leave them out nor my oldest grandson Andrew. Like any granddad I love them all and they are each unique. But Cole is a "special" child and requires special attention.

I could list all the little things Cole did and said that he did not even a week ago. There are many, his motor skills are improving, his speech is improving, his vocabulary and command of it is expanding exponentially. But today I am filling a little melancholy and philosophical.

All parents of more than one child at some point realizes, willing or not, one of their children requires more attention, needs more support and sometimes pulls a little harder on your heart. Grandchildren are no different. Love is not a measurable commodity and should not be, it is a gift to be given with no expectation of return. There are no scales to balance love given and received only the heart can do that. A child's love is special. It fills your heart to overflowing forcing you to share it with everyone who will accept it.

Cole pulls at my heart. He does so to everyone who comes to know him whether you know of his FX or not. He is just a loving child. He gives us his love with no expectation of return. His innocents allows him give his love for no purpose other than to giving it to you. Not offer it, not trade it, not to manipulate you. When Cole hugs your neck or gives you a kisses he expects nothing, not even love in return. We should all be that way.

I cannot leave without a request for everyone to support a children's charity. I hope that it will be for FX research, but there are many that need our help. With that I want to thank our good friends Larry and Sharon, whose cabin we lived in for three months after our fire. Larry refused rent instead ask it go to a donation to FX for Cole. Something he would never tell and generally I wouldn't either. But today my heart is overflowing and like Cole we should all be that way.

Well it is the morning after. Cole and Cale came for the day yesterday and they were two balls of energy.

Marcia made breakfast for them and the scoffed it down and then wanted to take a bath of all things. So they splished and splashed in the tub for about thirty minutes. Both attempting to dog paddle in the 3 inch deep water. Cole loves to put his head underwater. Which is a bit scary but he always pops up after 10 or 15 seconds. Of course Marcia and I both got a good shower in the process.

Let the water out and got them both out. While in the process of drying Cole off I looked around to find Cale had climbed back and was turning on the water. That one loves to climb everything.

We moved outside as it was becoming a beautiful Saturday morning. Cole got into his little push car and made a few trips up and down the drive before he remembered the swings. I had hung two swings on the carport and had took the swings down after the fire but had bundled the chains around the hooks to get them out of the way.

Cole pulled his car up under the chains and pointed upward. "Swing, Pappy, swing. So our morning activity was set. I gathered up the swings and re-hung them. Cole jumped in and buckled himself in like it was just yesterday he had his last swinging session. Cale did as well. Both yelled "yeah...." as the pushed the locks in on the straps, clapping and bouncing up and down.

Cole told me to "push, Pappy" I did and then he said, "higher pappy". At that point he told me, "down, Pappy, I want down." I was a little perplexed that he was tired of swinging so quickly. I took him out and he went over to Cale's swing. "Cale out, Cale out". Cale just like me not knowing what was going on but wanting to do what ever his big brother was going to do said "yep, I 'ont down".

Well as soon as Cale was out of the swing Cole jumped in and began to lock himself in. Then I knew. Cole loves to kick at the ceiling fan on the carport and he couldn't do it from the other swing. So after the exchange of swings we spent the next hour swinging and aggravating Granny(Marcia) everytime he would go high enough to hit the fan blade with his foot. But even she fell victim to his infectious laugh every time would do it.

Cale on he other hand was content to just go back and forth and sing his little songs in that "alien" language.

We made it to lunch and then went on a ride to T'ville. They both laughed and carried on. Cale sang "paddycake" and Cole talked about his favorite thing, "Thomas and Friends". Back home about an hour later and back into the swings for another hour or so. Both are learning to propel themselves but I think they are holding back because they had rather their "Pappy" push them.

Once back inside for hopefully a nap Cale brought a pillow to the center of the den floor and signaled for me to once again become the human trampoline. For the next 30 minutes the jump, roll over and ride on me as I lie on the floor. Cole calls out between each attack on my anatomy, "Cale's turn, me turn". Amazingly they wait for the other to make their dive bomb attack before making their own run.

Cole and Cale show now jealousy. After the session on the floor I climbed bruised and battered into my recliner. Cole soon climbs in too with his Thomas book. "Read Thomas, Pappy". Then he calls, "Cale, Pappy lap" and Cale climbs in as well. Cole turns the pages and we read. Cale loses interest and climbs down to play with his blocks. Cole continues to turn the pages and point out and name all the characters and animals.

They are both making progress with their speech and communications. Cale talks constantly and he is more understandble. Cole is using more and more short sentences to ask for things and to tell you what he wants. Cole is a long ways from where he was just a year ago. Cale is catching up in a hurry as well.

Oh, we got a small tv with a built in DVD player. Cole was rough on the little DVD players. Taking the DVDs in and out all the time he would break the tray. We thought that the hidden slot for the DVDs would be just the cure for this. Well, I made the mistake of putting the DVD in the slot with him sitting in front of the TV.
Low and behold I come back in the den and he has the the DVD out trying to put another one in the slot. So what the heck, I showed him how to do it, he had alread figured out which button to push so the cat was out of the bag anyway.

It was a great day with our two grandsons and could have only been better if Andrew was there as well.

On another note, I just discovered this week that I can see how many times this blog is veiwed. Over a 1000 veiws, thank each of you for your interest in Cole and in Fragile X. I hope that my little reports will remain interesting as I try to tell about Cole's progress and how he much he adds to our lives.

Fragile X is a genetic disorder that can become a part of your life. Like so many other things that affect our health and the health of our loved ones there is seldom a warning. It is here and we must deal with it. Some will have a bigger burden than others but each will find the need to make sacrifices to provide the support their child or grandchild will need. No matter what the malady may be, they all need support from those who have not been touched, yet. It is easy to gravitate toward support of deseases and disorders that affect children and especially those that are crippling or terminal.

Fragile X Syndrome is not necessarily crippling nor is it terminal in the normal terms. Fragile X can be seriously dibilitating and it is terminal in the fact that the child will become an adult and will have the disorder till death. The fact is this disorder will allow that the child will outlive his parents but still be in need of support, not only finacial but physical and emotional support. This is another plea to those touched, untouched or removed from Fragile X syndrome to consider supporting National Fragile X Foundation which offers support to families, FRAX which funds research into treatments and cures or Easter Seals which offers therapies and services. These are their websites.

fragilex.org
fraxa.org
easterseals.com

Thanks Again.

Hi! Been a few weeks since I have posted anything about Cole. We have finally began to live in our home again. Erin spent the night with us Thursday and Friday nights and Cole and Cale came over Saturday morning. They stayed until we took them home for Cole's birthday party.

His Nana and Papaw, Aunt Dana, Mema and Grandaddy Thomas were there as well as Brandi and Chris and their friends the Skinners.

The Skinners have two small children, Alyssa and Caleb. When they arrive Cole began to holler Caleb, Caleb. Caleb must be around 2. Alyssa 3 or 4. They all played well together on the swings. Cole fell out of the swing a couple of times, but jumped right up. Cale ran into the swing a couple of times.

Cole and Cale both seem to interact well with other children. They were both tired from playing hard all morning and no nap. I wondered how well they would do. They were pretty good. After the cake cutting and eating the kids began to play again.

Cole brought me two balloon that were tied together. He said "apart, Pappy, apart". It took me a second to realize what he was saying, then he separated them at the knot and handed them to me. Upon untying them I gave back to him. He immediately turned and gave one to Alyssa. Saying, " here lyssa, here". He really amazes me sometimes with his willingness to share things when he has more than one. With only one though he does become a little selfish.

After opening his presents, he showed his Nana, Papaw and me his new "Thomas DVDs" and the for Thomas books. Then he gave each of us a book. Sharing again.

He then sat for several minutes and identified all the trains in the books for Nana and me. Then he read for me, in jibberish, each page in the little books before pronouncing the end.

Cole's vocabulary continues to grow. He still does not readily name colors and has to be prompted to do any counting. But he recognizes more animals by name and sound. He uses more and more words in sentences.

I got tickled at him when he was showing me his DVDs and books. Their was one box with DVDs and 4 little books about 3x5. He did something just like I would do. He could not hold all of them at one time and show them to me. So he put the DVD box between his knees then attempted to hold up the 4 books. The DVDs fell to the ground from between his knees each of the 3 times he tried it. Then he picked up the DVD box and slammed on the coffee table and proceded to show me the books. Just seemed like something my impatience would have me do.

Backing up to the morning. When Cale and Cole arrived Cole's first request was for "COKE". Followed immediately by Cale saying "COKE". So I guess I have addicted both of them for life to Co-Cola for breakfast. I know that Brandi could shoot me.

Cole did get upset when I tried to get him to use his fork at breakfast. He told me "I don't want it". Then handed it to me. I put back on the table and he immediately handed back saying " I don't want it". Didn't force the issue. He was doing so well with everything else. He can display a little temper at times and I could see it coming.

Then I heard the backdoor open and then Cole gave out a holler, GamMa(not sure about the spelling). It was my Mom. Cole has not mastered Grandma yet, but Mama melts at the sound of Cole saying GamMa. Both he and Cale ran to her and gave her hugs and kisses. These are such loving children. Erin held back because she is so grown up at almost 7, but she finally gave hugs and kisses.

We went back outside and I got Cole to pedal the "big wheel" a little, but he still ends up pushing it along with his feet on the ground. I do think he was getting the idea of how it works though. Cale is so short he can't touch the pedals yet.

Then the sweetest momemt of the morning came. Marcia was sitting on the edge of the cedar chest, which is the only peice of furniture not to make it off the carport and into the house. It contains all the things that belong and remind us of our son Jay.
It is to heavy for us to move without unpacking. I don't think either Marcia or I want to go down that emotional road just yet. But to the moment.

As Marcia was sitting on the cedar chest Cole climbed on to it and then stood behind Marica and hugged her kneck from behind. The he said, "Granny, scatch your back". Marcia said " Please do". Cole sat with his legs stradle the chest and scratch Marcia's back for a minute or so. Then he said, "feel good, Granny" and hugged her again.

Moments like these might be taken for granted in a five year old if not for Cole's FX. The FX chromosone limits production of a protien which allows connections between sections of the brain to grow. Literally parts of his brain cannot communicate to other parts. So every little word or act of cognition and recognition are little triumphs.

Cole's FX is mild and he continues to learn. He is a great little problem solver. He does not let anything slow him down for sure. We are so greatful for that.

I am the member of Fragile X group on Facebook. Very seldom do I post anything there, but I read the posts of other Fragile X moms and dads and I assume a few grandparents like myself. Sometimes it makes me sad as I read of the struggles of some families, but then some one posts a minor or major moment of progress and hope springs eternal again. I appreciate the honesty that all those in that group have in putting out their failings, successes, tragedies and triumphs.

For anyone reading this I hope you will at least remember these families and children in your prayers and if you can please support FRAXA at FRAXA.org as they search for treatments and cures for Fragile X Syndrome.

Thanks again.

Well unfortunately I do not have a lot to report about Cole. I have been so busy trying to finish up the house and it is so hard to have him over at the cabin to stay.

Marcia and I miss having him and Cale on the weekends so much. It looks like we will be able to move back in in a couple of weeks and then have them both spend the weekend.

Brandi, Cole's Mommy, told Marcia that Cole had gotten up in the middle of the night last week and fix himself some juice. He did a pretty good job all things consider. She woke up to catch him. He had gotten his cup out, his juice poured but the sippee cup didn't have the little valve.

I recently read a post going around on Facebook about walking away from the people that create the most "drama" in you life. I thought about it and realized that all the drama Cole creates just makes me want to love and hold him even more. I have found that the only cure for the saddness I sometimes feel is to hear Cole's say "Hey, Pappy". In fact Cole's smile is cures a lot of my ills.

We are fortunate and blessed that Cole functions so well. I read the posts from other parents and feel for their plight and struggles, knowing they could not love their child any less than I love Cole. I always go back to my Granny for strength. She lost five children before she passed away at 85. I was there for three of the five and she grieved but moved on. She told me she had learned not to ask "why me, but to ask why not me". Having survived 5 children two types of cancer and 3 heart attacks, I knew if she could overcome those battles and that loss I can also.

Cole and his FX "brothers and sisters" are alive and there is hope in life. I hope that everyone with and FX child can find that hope no matter how small a sliver it might be. There is strength in hope but it is also contagious. There is proof of that on of all places Facebook where a group of FX parents share their experiences, thoughts, triumphs and even despair. But most of all I see hope eminating from the conversations back and forth.

I am glad to report that FRAXA met the goal to recieve matching funds from the Doris Buffet Foundation. I hope that all that helped meet that goal will continue to support FRAXA. Also support Easter Seals and Special Olympics if you can.

That is all for me today. I hope to have some first hand stories about Cole and his progress next time.