A Visit with Santa 2008

So Friday was the last day of school for the munchkins. Christmas for the teachers was more of a challenge this year as J now has his regular ed teacher, a special ed teacher, speech therapist, OT, 6 different aides, and the nurse. I wish I had seen Betsy's Pretzels a few weeks ago - they would be an awesome teacher gift. I made Chex Muddy Buddies(AKA puppy chow) and gave them all $5 Starbucks cards.
Thursday we went to their class parties and then checked them out an hour early and took them to the mall to see Santa. Yay, I'm so glad we went when we did! There was only one family in front of us in line! Justin has refused to have any part in sitting with Santa ever since the Screaming Fit of 2004. Yeah, it's awful, but it will probably always be my favorite Christmas picture ever, because it's the one that makes me laugh every time.







But this year he joyfully walked up, said "Hi Santa" hopped up on his lap and in the very first snap, we got this amazing picture. What a difference a few years make!
He didn't stay long, but he handled it well and we were proud of him. They gave us coupons for a free cookie for each of them, so that part was great too. He wasn't happy on the way out because he kept seeing toys and he didn't like the idea that he was leaving without getting anything other than a cookie. Yeah, patience is not his strong suit.

Ollie is back this year, and our elf brought a note from Santa this morning. Apparently Ollie has seen the meltdowns and the disobedience, but he has also seen some very kind and loving behavior too. Maybe the reminder will keep them in check for a few more days. One can only hope, right? I'd hate for Santa to bring them nothing but coal, but I have a feeling Santa will be kind to them this year.

I need to get busy wrapping stuff today as I've only wrapped one present so far. Oh and I've not yet sent out one Christmas card. Yeah, queen of procrastination, here, I know.

Thankfulness...

Things I'm thankful for, some more serious than others, and not necessarily in order...

• My Lord and Saviour, Jesus Christ
• My family, immediate, extended, even my in-laws are awesome. I could go on for days just on this one, but I won't, because it would cause me to miss turkey dinner.
• That reminds me...yes I'm thankful for dinner, and the turkey who gave it's life for us. And dressing (Yummmm!), sweet potato casserole, rolls, dessert....yuuummmmeee!
• Friends....how would I survive without you?
• The internet, as it has allowed me to connect with many new and old friends.
• Kindergarten. J knew about half of his letters in August, and his IEP goal was to know them all by May. He knows them all, uppercase and lowercase, and can tell you the sound they make. And, I have a life of my own between the hours of 8 and 3 - it's awesome.
• Teachers who care - they make a world of difference.
• Hubby's job, which allows me to stay home.
• My DVR. How did we survive without it? We love it so much hubby and I each have our own. Actually I share mine with the kids, which means I watch a LOT of Dora and the Backyardigans.
• This country, the freedoms we enjoy here, and the many who sacrificed to make that possible.
• Take-out Chinese, because my kitchen is currently clean, and I'm not cooking tonight.
• The 11-0 season the Crimson Tide has had thus far, and the hope of beating Auburn for the first time in quite a while - Roll Tide Roll!
• My parents, for raising me right, & for telling me to marry hubby anyway, in spite of the fact that he's an Auburn fan AND a yankee.
• The current drop in gas prices - wow.
• Slice and bake cookie dough - that's good stuff.
• My church family, a fantastic pastor, and great teachers.
• The Hagerman's, Steve Warren, Dr Berry-Kravis, and the many other specialists, researchers, educators, & therapists who have made huge differences in our lives and who continue to work towards finding better treatments for our kids.
• All of the Fragile families who work together to help and support each other through this journey.

There's more I'm sure...but my crossing guard is ready to go out and direct the holiday traffic in our neighborhood, so I better go keep an eye on him. Happy Thanksgiving to all!

Penguin, James Penguin

I only have 1188 songs on my iPod....
My musical tastes are, well, odd at best. Hubby says it will be the sign of the apocolypse one day when I hit shuffle and we hear Amazing Grace, followed by Superfreak. Many years ago, when I had my albums alphabetized I used to laugh that it went from Amy Grant to ZZ Top.

Anyway, I found this on a couple of different blogs and decided to give it a try.
Thanks to Paula’s Place: http://paulafasciano.blogspot.com/ and Holly Daze http://hollyzzdavis.blogspot.com/ for this one. :)
1. Put your music on shuffle.
2. For each question, press the next button to get your answer.
3. YOU MUST WRITE THAT SONG NAME DOWN NO MATTER HOW SILLY IT SOUNDS!
4. Tag ** friends who might enjoy doing the meme as well as the person you got the meme from.

IF SOMEONE SAYS "IS THIS OKAY" YOU SAY?
You Might Think - The Cars

WHAT WOULD BEST DESCRIBE YOUR PERSONALITY?
I'll be Home For Christmas - Brad Paisley

WHAT DO YOU LIKE IN A GUY/GIRL?
Rumor Has It - Clay Walker

HOW DO YOU FEEL TODAY?
Summer Highland Falls - Billy Joel

WHAT IS YOUR LIFE'S PURPOSE?
In a Little While - Amy Grant

WHAT IS YOUR MOTTO?
Huckleberry _ Toby Keith

WHAT DO YOUR FRIENDS THINK OF YOU?
Must Be Doin' Somethin' Right - Billy Currington

WHAT DO YOU THINK ABOUT VERY OFTEN?
Sapphire Bullets of Love - They Might Be Giants

WHAT DO YOU THINK OF YOUR BEST FRIEND?
Good to Go to Mexico - Toby Keith

WHAT DO YOU THINK OF THE PERSON YOU LIKE?
Yes! - Chad Brock

WHAT IS YOUR LIFE STORY?
She's Got a Way - Billy Joel

WHAT DO YOU WANT TO BE WHEN YOU GROW UP?
Online - Brad Paisley

WHAT DO YOU THINK WHEN YOU SEE THE PERSON YOU LIKE?
Redneck Woman - Gretchen Wilson

WHAT DO YOUR PARENTS THINK OF YOU?
It is Well With my Soul - Wayne Watson

WHAT WILL YOU DANCE TO AT YOUR WEDDING?
There is a God- Valleydale Celebration Choir and Orchestra

WHAT WILL THEY PLAY AT YOUR FUNERAL?
I Ran (So Far Away) - Flock of Seagulls

WHAT IS YOUR HOBBY/INTEREST?
What Child is This? Vince Guaraldi - Charlie Brown Christmas

WHAT IS YOUR BIGGEST SECRET?
More Than a Feeling - Boston

WHAT DO YOU THINK OF YOUR FRIENDS?
She's a Beauty - The Tubes

WHAT'S THE WORST THING THAT COULD HAPPEN?
Friends in Low Places - Garth Brooks

HOW WILL YOU DIE?
I Left Something Turned On at Home - Trace Adkins

WHAT IS THE ONE THING YOU REGRET?
The Ballad of Billy the Kid - Billy Joel

WHAT MAKES YOU LAUGH?
Jungle Love - The Time

WHAT MAKES YOU CRY?
How Great Thou Art - Elvis Presley

WILL YOU EVER GET MARRIED?
Can't Get Enough of Your Love, Baby - Barry White

WHAT SCARES YOU THE MOST?
Atomic Dog - George Clinton

DOES ANYONE LIKE YOU?
Homegrown Tomatoes - Guy Clark

IF YOU COULD GO BACK IN TIME, WHAT WOULD YOU CHANGE?
I Play Chicken With the Train - Cowboy Troy

WHAT HURTS RIGHT NOW?
Escape(The Pina Colada Song) - Rupert Holmes

WHAT WILL YOU POST THIS AS?
Penguin, James Penguin - Brad Paisley

All I want for Christmas...

...is my 2 front teeth!

Yep, the Tooth Fairy is on her way to our house yet again! We don't know what happened to the tooth, and he doesn't care. This is his 4th lost tooth and only one of them we found. But Tooth Fairy understands and gives him credit for it anyway. Anyway, he lost it just in time - I may have to go download the Chipmunks version of '2 front teeth', just because it will annoy hubby to no end.

Well the good news on the stomach virus is that it has lasted just under 24 hrs for each of us. Lindsey got sick last night, and we had to throw away a teddy bear and her favorite pillow "Pilly". Yes, her pillow has a name and apparently is a girl pillow as Pilly is always referrred to as a 'she'. Anyway, we agreed that a new Pilly (this will be Pilly #3) will top her wish list. Let's hope Santa can handle that. It's a light up pillow - with an LED color changing light inside. Anyway, we are all feeling much better now...and we are praying that our recent guests will all be fine.

I was going to start Christmas decorating Sunday, but felt too bad to do anything - so hopefully we'll get started tonight or tomorrow. I found a crossing guard ornament, and a flamingo ornament to commemorate their Halloween costumes this year - so that's new, plus I got an 'arch' ornament from St Louis, but those are my only new decorations so far this year.

I think I'll go finish taking down the last of my scarecrows and other 'fall' themed decorations so I can start dragging out the other stuff.

An evening with Fragile friends

So our local FX group gathered at our house last night. We had 4 families - 8 adults - 9 kids(all between the ages of 3 and 9) - 3 girls - all full mutation, and 6 boys, 4 with the full mutation. It is good to gather with friends who understand, though - friends who don't give you odd looks when you have to excuse yourself to change your 5 yr old's pull-ups. It was great fun... the kids trashed the playroom, but that's what playrooms are for right? I think in my desire to clean up earlier in the day, I stressed out Lindsey a bit too much, because she came downstairs crying because 'we worked so hard and now it's all ruined!' Note to self...next time don't bother cleaning the kids' rooms.
Anyway, the big issue of the moment is one of our local school systems has decided to end their preschool program. They had been widely praised for the program, which is comprised of 50% special needs and 50% typically developing kids. The excuse, as I understand it, is that there is a federal mandate requiring then to educate children in their natural environment (home or daycare), also they are saying that they are required to have a 70/30 preschool ratio by the federal mandate, which they don't have the space to do. But they are really just cutting costs. They refuse to offer my friend's 9 year old services, even though she has a fx diagnosis and she did miserably on her standardized testing. Also her 3 year old brother was not admitted to the preschool program because he was doing too well. They offered him 30 minutes a month of OT, and no speech. Seriously, has anybody ever heard of a 3 year old boy with FX who shouldn't have speech therapy? And the reason he is 'doing so well' is because his parents are shelling out a fortune to put him in a private program. So I guess they have to take him out, put him in regular daycare, and wait for him to lose ground before they will do anything for him? Yeah, not gonna happen.
Anyway... school system beauracracies can be such fun, eh? But we had a good time swapping stories and laughing together, and I am thankful beyond words for friends who 'get it'.
And now I have to call my wonderful friends and warn them because overnight I began feeling ill, and now it seems that hubby and I have a stomach virus. How much are they going to love us if we gave them a stomach virus for Thanksgiving? Yeah. Fabulous.
Anyway, I guess we have an explanation for the random hurling we experienced from J a few days ago. Still it was just that one time and then he was fine again, so I didn't suspect a stomach virus. Now I need a Band-aid for my tummy.

A Band-Aid for my tummy...

J: I need a Band-Aid, Mommy
Me: do you have a boo-boo?
J: I need a Band-Aid for my tummy.

Cute, hmmm? No boo-boo on his tummy, and he's been playing and snacking all afternoon like normal, but big sis loves Band-Aids and is always looking for an excuse to get one, so I figure he's just imitating her, right? Nope.

Apparently, "I need a Band-Aid for my tummy" is code for "I'm about to hurl recycled mac and cheese and yogurt all over the carpet". Yeah. Thanks for the warning, son.

And now, he's running about chasing his sister and acting perfectly normal as if nothing happened.

Invisible mom

I got this in an email the other day and I just loved it and wanted to post it for those of you who might not have read this one yet. :)


Invisible Mother.....

It all began to make sense, the blank stares, the lack of response, the way one of the kids will walk into the room while I'm on the phone and ask to be taken to the store. Inside I'm thinking, 'Can't you see I'm on the phone?' Obviously not; no one can see if I'm on the phone, or cooking, or sweeping the floor, or even standing on my head in the corner, because no one can see me at all. I'm invisible. The invisible Mom. Some days I am only a pair of hands, nothing more: Can you fix this ? Can you tie this? Can you open this??

Some days I'm not a pair of hands; I'm not even a human being. I'm a clock to ask, 'What time is it?' I'm a satellite guide to answer, 'What number is the Disney Channel?' I'm a car to order, 'Right around 5:30, please.'

I was certain that these were the hands that once held books and the eyes that studied history and the mind that graduated summa cum laude - but now they had disappeared into the peanut butter, never to be seen again. She's going, she's going, she's gone!?

One night, a group of us were having dinner, celebrating the return of a friend from England . Janice had just gotten back from a fabulous trip, and she was going on and on about the hotel she stayed in. I was sitting there, looking around at the others all put together so well. It was hard not to compare and feel sorry for myself. I was feeling pretty pathetic, when Janice turned to me with a beautifully wrapped package, and said, 'I brought you this.' It was a book on the great cathedrals of Europe . I wasn't exactly sure why she'd given it to me until I read her inscription: 'To Charlotte , with admiration for the greatness of what you are building when no one sees.'

In the days ahead I would read - no, devour - the book. And I would discover what would become for me, four life-changing truths, after which I could pattern my work: No one can say who built the great cathedrals- we have no record of their names. These builders gave their whole lives for a work they would never see finished. They made great sacrifices and expected no credit. The passion of their building was fueled by their faith that the eyes of God saw everything.

A legendary story in the book told of a rich man who came to visit the cathedral while it was being built, and he saw a workman carving a tiny bird on the inside of a beam. He was puzzled and asked the man, 'Why are you spending so much time carving that bird into a beam that will be covered by the roof, No one will ever see it. And the workman replied, 'Because God sees.'

I closed the book, feeling the missing piece fall into place. It was almost as if I heard God whispering to me, 'I see you, Charlotte. I see the sacrifices you make every day, even when no one around you does. No act of kindness you've done, no sequin you've sewn on, no cupcake you've baked, is too small for me to notice and smile over. You are building a great cathedral, but you can't see right now what it will become.

At times, my invisibility feels like an affliction. But it is not a disease that is erasing my life. It is the cure for the disease of my own self-centeredness. It is the antidote to my strong, stubborn pride.

I keep the right perspective when I see myself as a great builder. As one of the people who show up at a job that they will never see finished, to work on something that their name will never be on. The writer of the book went so far as to say that no cathedrals could ever be built in our lifetime because there are so few people willing to sacrifice to that degree.

When I really think about it, I don't want my son to tell the friend he's bringing home from college for Thanksgiving, 'My Mom gets up at 4 in the morning and bakes homemade pies, and then she hand bastes a turkey for three hours and presses all the linens for the table.' That would mean I'd built a shrine or a monument to myself. I just want him to want to come home. And then, if there is anything more to say to his friend, to add, 'You're gonna love it there.'

As mothers, we are building great cathedrals. We cannot be seen if we're doing it right. And one day, it is very possible that the world will marvel, not only at what we have built, but at the beauty that has been added to the world by the sacrifices of invisible women.

Great Job, MOM!

Halloween and other updates

So here they are, my little flamingo and crossing guard. J is obsessed with the crossing guard at school and 'directs traffic' at the end of our driveway every day after school - so easy costume. Lindsey originally wanted to be Ariel (Little Mermaid) but she has been a Disney Princess every year for several years so I asked her to be a little more creative. So she wanted to be a flamingo. So 4 pink feather boas and a lot of hot glue went into this creation. She's Pinkalicious!

Yesterday I was trying out my new camera and chatting with the kids about the pumpkins we decorated to match their costumes, so here's my first youtube video. :)

http://www.youtube.com/watch?v=sJ5O4CbQHOM

Let's see what else...it is the season for birthdays for us, so in the past week and a half we've had my dad, hubby, sis-in-law, nephew, and then last is me. I always jokingly gripe because I never get my own cake - I always get leftovers because we are all tired of cake by this point. Yikes, it's been nothing but cake and Halloween candy for weeks it seems. I think I want a birthday pizza instead.

Catching up...

Here I am again, wondering who I was kidding when I thought 'I should blog!' Grand intentions, no follow through - story of my life. Maybe I can blame it on fragile x? Nope...I think I'm just lazy. :)

So anyway, school is in full swing - Lindsey is in the 3rd grade and Justin is in kindergarten. Lindsey is falling behind a bit in both reading and math. We spent hours last night trying to explain the concept of rounding to her, but she just looks at us like we are speaking another language.

Here are a couple of '1st day of school' pics.

Lindsey loves being the big sis, so at the beginning of the school year there was always an aide there at the carpool line to assist in getting Justin to his class, but she's like 'no, I got it' and walks him to his class and helps him unpack his backpack and stuff. And so that continued, and somehow without us instructing her to do so, she just knew that she could gradually back off a bit each day. Now she just walks him to the kindergarten hallway and then watches him walk to his room. I'm so stinkin' proud. :)

Justin is quite the ladies man. Everybody wants to help Justin and sit by him. When I was there for lunch last week there were about 5 kids patting the seat next to them and calling to him to sit by them. The teacher tells me that when they go down stairs he gets nervous and says 'I can't do it' and one of the girls holds his hand and walks with him. Now he has no trouble with stairs anywhere else, but the little girls are cute, and I suspect he is enjoying the attention. Yesterday there was quite a drama over who would help Justin which ended with 2 girls crying and Justin grinning through the whole fight.

3rd grade boys, by the way, are really obnoxious. I was there for lunch again today, and the teachers in 3rd grade sit at the teacher's table in the center of the room rather than with the kids. One of the boys in Lindsey's class sat across from me and was using his plastic fork to fling small bits of bread up to the ceiling. I would have said something to him but I was more appalled by the boys at the next table who were apparently practicing for their frat party days. They were over there chanting 'chug! chug! chug!' while each other chugged their milk cartons. Good grief...where do they learn that? Anyway, it was just loud and obnoxious and I have FX too, so maybe I was just overstimulated...whatever. I'm not looking forward to lunch with 3rd graders again any time soon.

It sounded like a more like a crash...

So we are back from St Louis, and I can now sit long enough to type for a few minutes...oh that's another story that involves carrying laundry down hardwood stairs and and what happens when a fleece blanket gets caught under your shoe. Suffice it to say that there is a horrifyingly large and purple bruise on my backside and my left elbow and shoulder are killing me. Anyway...lesson learned - don't do laundry. Yeah...that'll work right? Ah well, hubby did take pity on me and vacuum yesterday. Oh and when hubby asked Lindsey if she heard a big bump when I fell, she responded that 'it sounded more like a crash'. Yes, well then, perhaps you should have come running to help mommy instead of me having to cry and scream and beg for you to bring me a phone so I could call daddy before I passed out from the pain, eh?


Anyway, we had a lovely time in St Louis, met some new friends and reunited with old ones. We were encouraged to hear the latest research seems to be producing good results, but unfortunately the FDA process moves slower than we would like.
I'll be busy working on how to make picture schedules in the coming weeks, and school starts this Thursday!!! J's going to kindergarten and Lindsey's going to 3rd grade - I am both excited and terrified! Lots of big changes this year and we've got a lot to think about and plan, but I think it's gonna be a good year. :)

Ok, I'm gonna go ice my butt again...lol.

Meet me in St Louis!

So we are 2 weeks out from conference and I'm getting excited! Ah, so much to do and plan and pack! Justin is going to my parents house and Lindsey is going to the in-laws. She'll stay some with grandma and some with her aunt, uncle and cousin. They are both much easier to handle separately where they can't fight with each other, so we will split them up. Pray for my parents especially as they live on a lake and J's favorite thing is to go throw acorns and rocks into the water. He doesn't swim so they can't let go of his hand near the water and that's where he wants to be all the time. So that makes me a bit nervous.

I'm thrilled to meet up again with folks we met 2 yrs ago and looking forward to learning more about the latest research news. Should be a great time!

FX in Time Magazine

http://www.time.com/time/magazine/article/0,9171,1818268,00.html
Woo! It's a 3 page article in the print edition of the magazine - there's actually a bit more in the print version than online. It's a really nice profile of a family affected in 3 generations. The boy who has cognitive impairment, the mom who is a carrier and is in the early stages of FX associated premature menopause, and the grandfather who has fragile X associated tremor ataxia syndrome(FXTAS). I'm excited to see it features so prominently in a major news magazine - I'm tired of hearing 'fragile what?' when I mention it.

Clearly I am terrible at blogging

Could it be because every time I sit down at my computer, J is in my lap screaming "I wanna be the HEEEEROOOOOOOOOOOOO!!!" ? Yes, well, he loves Veggietales, and I sat here with him one day looking at Veggie silly songs on YouTube, and he fell in LOVE with the SUV song. If you haven't had the pleasure of hearing this song 8 million times, as I have - go Google 'YouTube SUV Song'. Just be warned - don't do it with a little person around who might become addicted to it, or you will lose your computer forever. Gotta go...he elbowing me out of the way now, he's gotta be a hero. :)

New perspective

This past Friday night a fellow church member and local radio personality, Rick Burgess, lost his son in a tragic drowning accident. William Bronner Burgess, affectionately known as Cornbread, was 2 1/2 years old.
http://www.youtube.com/watch?v=heHQkmCOYaU

Rick spoke at the memorial celebration. More accurately, God spoke through Rick. I am so thankful for his words, because I've been given a new perspective. An eternal perspective. I would encourage anybody reading this to take a few minutes and go hear this. His message is available in 3 parts on Youtube -if the links here don't work, search for Rick Burgess, a Father's Heart.
http://www.youtube.com/watch?v=5PUHUZWyFeg

http://www.youtube.com/watch?v=B7aNDixS2J0

http://www.youtube.com/watch?v=DUT8Bk6Ou90

I am heartbroken for this family in the loss of this beautiful baby boy, but I praise God for the lives changed through this. I know I am changed. Our son's issues will continue to be a challenge, but now I have the eternal perspective that these issues are only for this life. I am reminded of the things that matter in eternity, and most of the things I fret about in my daily life mean nothing beyond this life, just a blip on the timeline, and I am grateful for that reminder.

John 14
1"Do not let your hearts be troubled. Trust in God; trust also in me. 2In my Father's house are many rooms; if it were not so, I would have told you. I am going there to prepare a place for you. 3And if I go and prepare a place for you, I will come back and take you to be with me that you also may be where I am. 4You know the way to the place where I am going."

5Thomas said to him, "Lord, we don't know where you are going, so how can we know the way?"
6Jesus answered, "I am the way and the truth and the life. No one comes to the Father except through me. 7If you really knew me, you would know my Father as well. From now on, you do know him and have seen him."