Saturday, December 20, 2008
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.
Tuesday, November 25, 2008
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!
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
Monday, November 24, 2008
Sunday, November 23, 2008
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.
Tuesday, November 18, 2008
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.
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!
Thursday, November 6, 2008
Wednesday, October 1, 2008
Sunday, August 3, 2008
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.
Wednesday, July 9, 2008
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!
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.
Friday, March 7, 2008
Friday, January 25, 2008
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.
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.
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."