New Year's thoughts

So I'm late kicking off the new year, but the Great Sinus Infection of 2013/2014 has left me severely unmotivated these past 2 weeks.  My friend Matt suggested I start naming my illnesses like they do for hurricanes or winter storms.  If so, it would seem traditional to begin with an 'A' name, but I'm tempted to name this one Bah Humbug as it stole much of my Christmas spirit. 

Anyway, I'm starting to feel more like myself, so I'm determined to de-Christmas the house today and start getting back to normal.  Have been reading a book called Made to Crave, about craving God and not food, and it triggered some thoughts that I want to keep in mind.  I don't do New Year's resolutions.  They don't work.  But it seems the time of year to think about changes and these are things that I am determined to make part of my life for the rest of my life. 

Cravings.  We all have them, and tend to crave more of whatever we consume.  Eating junk food creates junk food cravings.  Watching tv causes you to see commercials for other shows, or for upcoming episodes - causing you to crave more tv.  Playing mindless games on the phone/tablet just causes you to continue wanting to play.  Eating healthy food triggers cravings for healthy food.  Spending time in Bible study and prayer causes us to crave more time with God.  Exercise - I'm not sure it's possible that I'll ever crave it, but in theory I suppose that if I can make it a habit, I will learn to hate it less, right? 

I've also been thinking about how finite life is.  I have a limited number of hours, days, years on this planet.  God placed me here, in this family, in this community for a purpose, and every minute that I waste playing electronic games, or watching mindless television is a minute that could have been better spent.  And I've wasted a LOT of minutes on things that produced nothing of value.  Along with that thought is the realization that if I don't do a better job taking care of my health, I will likely cut short the number of minutes, hours, and days that I have here with my family, taking care of the business that I'm supposed to be about. 

So the goal is now to redirect my habits and therefore my cravings, and to be mindful of spending my time on things that are productive for my physical and spiritual health, for my family, for my community, and for His kingdom.  :-)

Progress

Last night as I was brushing Justin's teeth, I was thinking that it wasn't that long ago that I could barely get a toothbrush in his mouth.  He fought like a little madman to keep me from brushing his teeth.  We started with counting 3 swipes across the front teeth and done.  Even then it took probably 10 minutes to an hour every time to get him to do it.  I remember thinking there is no way this child is ever going to willingly do this.  Now there he stands willingly for probably 30 seconds while I brush.  It's not perfect.  We haven't even attempted flossing yet.  But every day we are consistent and very, very, slowly we increase the routine and I desperately wish for a time machine so I could show the "me" of 3 years ago could see Justin standing there smiling while I brush his teeth now.  I couldn't have fathomed it them, which makes me wonder what he will do 3 years from now that I can't begin to imagine today.

Haircuts were another battle I didn't think we would ever win.  Somewhere around 3 years old we could no longer hold him still enough for a haircut - they would be afraid to try to cut his hair because he flailed and hit so much.  So for a few years we would take him to the basement, strap him into an old carseat and buzzcut him, while he screamed.  This always ended with all three of us covered head to toe in sweat, tears, snot, and hair - not a fun experience.  Eventually we tried the salon again(I told him he needed a haircut and we could do the basement/carseat thing or he could try to behave at the solon, his choice)- he didn't like either option, but with a reward of a dinner out, he did it.  For a while I had to stand right by him and occasionally help him hold his head and hands still, and give constant reminders.  Yesterday, he got a haircut - and I just sat in a chair and waited.  So much progress!  There was a time I couldn't imagine him doing this but here we are.  :-)

Anyway, it just really hit me last night as I brushed his teeth and looked at his sweet smile and his fresh haircut that these two were such huge hurdles, how hard we had to work to make these two routines possible, but now they are, and again I desperately wish I could talk to that younger me and tell her that he will get there.  Yes, it is a long and sometimes painful process, but he will get there. And since I can't have a time machine and talk to that younger me, maybe I can give a little hope to the younger moms, and maybe I can give a little hope to myself for the road ahead. 

We still have a long way to go in a lot of other areas, but knowing that we managed these things that seemed impossible to us not long ago, gives me the courage to continue facing more impossible things, knowing that we have overcome these impossible hurdles already. 

Thankfulness

So, it's early Thanksgiving morning, and I've made a few random 'thankful' posts this month on my Facebook wall this month, but before this day gets crazy on me, I'm feeling the need to spend a few quiet moments here thinking about the many, many things I have to be thankful for. 

1. So first, I am thankful for God, the source of all of our blessings and our creator and savior.
2.  My parents, who I'm blessed to still have with me, and who are still happily married after 53 years.  They have become dear friends, and precious allies, who I know would still walk though fire for any of us. 

3. My husband, who still manages to love me in spite of my many, many flaws.  He is an amazing, loving, silly, wonderful dad to our kids.  He works incredibly hard to provide for our family.  And he doesn't roll his eyes(much) when I scream for him to come kill a bug.  

4. My daughter, Lindsey, who is still my princess girly-girl, who still fills my world with all things sparkly and pink.  She is quiet, thoughtful, sweet, and loving, and I couldn't be prouder of her.  Even when she is angry with her brother(almost hourly), she still adores him, and would do anything for him. 

5.  Which brings me to Justin, who introduced us all to the world of Fragile X Syndrome.  How boring would my life be without this one?  He is hilarious, sweet, loving, occasionally really exasperating, but a joy every day.  He teaches me patience every day.  He teaches me to throw out the standard parenting books, and constantly be on my toes.  He teaches me to pray.  And he has brought a whole new assortment of amazing friends into my life. 

6. I am thankful for other parents of kids with FXS.  It is a great blessing having people who truly relate, and who I can share all of the craziness of this with.  They laugh with me, pray with me, cheer for his accomplishments, and give me new ideas and inspiration daily.  Thanks for sharing this journey with me. 

7. I cant leave out all of my other friends - I am blessed with great friends from throughout my life.  I've always struggled with shyness, social anxiety, and well, just always thought I was just a little too weird, for lack of a better word.  But somehow, certain people have come into my life, who seem to overlook my flaws (or maybe they are just a little weird too? LOL) - anyway, I'm thankful for each of you, and for the love, encouragement, and laughter you bring to my life.   

8.  My in-laws - you don't have to look far(especially today) to find people complaining about their crazy, mean, horrific in-laws.  I am blessed that I truly love and get along well with all of my husband's family.  I couldn't ask to have married into a better family.  

9. My own extended family.  My grandparents are no longer with us, but I am thankful to have had them in my life for as long as I did.  I was blessed with only a few first-cousins and aunts and uncles, but more second-cousins, and great-aunts and uncles than I can count on my dad's side.  I am thankful for the yearly reunions, and times in-between, and for the rich heritage of my Young and Thomas families.  My mom's family is mostly unknown to me, but I am thankful to them, for raising an amazing woman - they must have done something just right. 

10.  Knowing so many who are struggling financially, or out of work, I have to be thankful for my husband's job.  He gets to do something he enjoys, with people he likes, and provide well for our family in doing so.   His job has allowed me to continue being a stay-at-home mom, which I love and am grateful for. 

11. The doctors, researchers, therapists, and other experts, who are devoting so much of their professional lives to FXS.  They are constantly searching for new treaments, new therapies, to enrich the lives of those with FXS, and those who care for them. 

12.  Great teachers.  My kids have been blessed with many outstanding teachers, who love and encourage them, who take the time to understand their learning styles, who continue to ask about them even years later.  You know who you are, and I hope you know I adore you. 

13. My country.  Even with the many things currently wrong with our country, I still can't imagine living anywhere else.  I am so very thankful for the freedoms we have and for the men and women who have served to secure those freedoms and to protect our nation and people.

14.  My church family.  We are blessed with great friends, great music, solid teaching, beautiful worship, many missions opportunities, and a fantasically helpful special needs ministry. 

15. My brothers.  Scott, who taught us about FXS before we knew what it was called, is still as funny and sweet and cantankerous as ever.  And Mark, who is now in remission from Lymphoma, and I pray he will stay that way.
16. I'm thankful for those who will share a table with me today, and I pray safe travels for each of them.  I'm looking forward to the fun and laughter even more than the food (and you know I'm looking forward to the food!). 
I guess I will break here and go get started with the day, but I'm sure I will be back with more. 

I'm thankful to have so much to be thankful for. 

Home again...

Finally home with both kids. :)  Hubby and I have been in Miami with a thousand or so of our best friends - mostly other families with fragile x syndrome, but also the experts(doctors, therapists, researchers, etc).   I have to say first how immensely grateful I am to have such fantastic family who really step up when we go to conferences.  To make it easier and more fun for everybody, we split up the kids.  Like most siblings, they fight.  A LOT.  So a week apart is a very good thing and makes it much more pleasant for everybody.  So she went one way and he another and everybody seems to have had a grand time. 
The International Fragile X Conference is about 5 days of sessions covering just about every possible thing you want to know about FXS.  The latest research and clinical trials, the speech and occupational therapy discussions, sessions on the related disorders that cause tremors and ataxia or early menopause, behavior, toilet training, sibling issues, special needs trusts, fundraising, advocacy, and much more.  My favorite part though is always the friends.  I have made some very dear friends at prior conferences and we usually only manage to see each other every two years at this event, so catching up with them is great fun, and I always meet new friends also, and I know I will look forward to seeing them in 2014. 
Speaking of 2014, the next conference?  Orange County, CA.   Yep.  And of course I have already been looking online at the hotel - it's only blocks from Disneyland.   Eeeeeeeek!   I've already been researching what airport to fly into and looking to see if there are direct flights and debating about bringing my kids/not bringing my kids.  I'm not sure my kids would forgive me if I didn't bring them.  Anyway...we've got a year and a half or so to make that decision, so I'm going to try to set it aside for a while. 
So, first I need to work on putting into practice what I've learned.  First order of business - potty training.  Yep, he's 9, but we are still not there, and clearly what we are doing isn't working.  After the potty training session, I spoke to one of the presenters, told her a bit of our issues, and she said she would work with me to find a better plan.  So for now, I'm to log everything for 2 weeks, email it to her, and we will go from there.  If we can't figure it out by email or phone, she will travel to Birmingham and work with me.  Yay - I found my potty training miracle worker(I hope)!  I don't know what it will cost me, but really the laundry and the pull ups are pretty expensive too.  So we have a plan to address that issue. 
Next will be dealing with the anxiety and aggression, trying to discipline myself to make picture schedules and other things to make his world make more sense.  Fine motor issues are another thing we need to work on, and I've got some more strategies for that. 
Our local group has some new ideas and plans for fundraising, awareness, and social events that I'm pretty excited about.  We are hoping and planning to bring some of the awesome experts here sometime soon.  Lots to do and plan... 
For now - back to real life!

Anticipation...

Hmmmm....so I haven't posted anything in a reeeeally long time.  Guess I haven't had a lot to say.  Or more likely just haven't taken the time to type it.  Anyway...I am just about giddy with anticipation.  Today is laundry and errands in prep for the coming week.  Tomorrow is church and then we have a fragile X awareness event at the local minor league baseball game.  Hoping to meet a few more families from our area there and spread a little awareness also. 
Monday, Lindsey and I, and I think my friend Beth and her daughter are going for mother daughter mani-pedis - Beth and I have to have cute toes for Miami, right?  Monday afternoon Tim and I take the kids to the family that will be taking care of them while we head to Miami for the fragile X conference on Tuesday.  And the conference is the reason I am giddy.  More accurately, the people who will be at the conference are the reason.  At our first conference in 2006 in Atlanta, we met Matt and Beth, who live very nearby, have kids close to our kids ages, and have become like family.  Also in Atlanta, Tim and I were walking to a Ruth's Chris one night during the conference and met Kristie, Eric, Kelly, and Tony. They kindly invited us to share a table with them, and they became instant friends of ours who we wish we could see more than once every two years.  We meet new people every time we go, and so we look forward to seeing many old friends, and we know that we will meet new ones also on this trip.  I look forward to the time with friends even more than the sessions - and I really do look forward to the sessions. 
Like many in the FX world, social anxiety is a challenge, but at conference, at least for me, that becomes so much easier. Surrounded by people who know and understand and live fragile X, I feel like I'm home.  Not having to explain "fragile what?" to anybody is wonderful.  And as somebody (Arlene maybe?) said on the getting ready for conference podcast said - I can take off my armor.  That is such a wonderful description of how conference feels to me.  Surrounded by people who understand me, understand my kids, who aren't shocked by stories of the bizarreness that sometimes happens in my world, who have stories equally bizarre and uncannily similar - people who "get it" - it's just one of my favorite things.  And so I look forward to that feeling, and I know I will meet lots of new friends, and I will want to take them all home with me.  Ok, maybe most of them.  ;)

Thankfulness

1 Thessalonians 5:18 give thanks in all circumstances, for this is God's will for you in Christ Jesus.

So Thanksgiving is tomorrow and I haven't posted anything in quite some time, but here I am...and feeling thankful. Yes, Fragile X is still causing it's share of havoc in our family, but we are blessed to have 2 healthy children. Tim has a good job that he enjoys and he is able to support our family and allow me to stay home. We have a stable, loving marriage. We don't have any crazy meddling in-laws or Jerry Springer dramas(not in the immediate family, anyway!). Our kids have caring, dedicated teachers, and we are blessed with great friends. All in all, much to be thankful for. Most of all for God and his Son, Jesus, we are thankful.

For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life. John 3:16

Bullies

Oh, let's see....where do I start? Generally Justin seems to be very popular among his classmates. They argue over who will sit next to him at lunch and who will hold his hand on the stairs. The kids in his class are all very sweet to him. Last Thursday, I was there for their fundraiser Fun Run. The kids were all running laps and the teachers are all at the start/finish line marking their t-shirts at each lap. So just past the start/finish all the teachers backs are turned and I see a kid from another kindergarten class run up behind J, grab the back of his shirt, jerk him to the ground, and then take off running. I was in shock. And torn between checking on my child and chasing the other one down. Of course I had to go check on J, and he just dusted himself off, smiled, and went on. By then I lost track of the other kid (they were all wearing the same shirt, and I only saw the back of his head). I didn't say anything about it at the time because I couldn't identify who did it, and Justin wasn't upset.
So this week I got this note from his teacher "Last Thursday, at free play, we had a little incident. Justin went down the slide and there was a child at the bottom of the slide- Justin kicked the child to get him to move. The boy preceded to try and hit Justin back. Of course Justin did not know any better so he started swinging at the child and anyone around him. I calmed both of the children down and talked to the little boy who tried to hit Justin back. I let him know that it was not okay for Justin to hit him, but sometimes Justin just acts. I also told him that he should NEVER hit a child back if they kick or hit him. The child was told to come tell an adult if Justin put his hands or feet on him again. I found out today that the very same incident happened at P.E. yesterday. One of the aides told me that it was with the same child. She told me that she did not know who started the hitting, and I let her know that I talked with that child and he knew that if Justin put his hands on him to go tell and adult and not hit back."
Free play would have been in the afternoon after the fun run, but I wonder if J and this kid have had prior incidents that the teachers didn't notice or report. So anyway, I did go to school & tell the teacher about what I saw at the fun run and she is going to talk to him and see if it might be related. I just can't imagine why a kid in another class would choose to target J as it seemed he did during the fun run.


And on the other end, Justin can also be a bully. We had a younger boy (also with FX) over to play one afternoon this week and J did NOT want him playing with his toys, and kept taking things away from him and shoving him. He only does this when he feels like something is 'his', not at school, but it's definitely something we have to work on so we can have friends over to play.

Haven't posted in quite a while. I've been meaning to, but it's hard to make myself do it at times. I went through a valley a few weeks ago worse than the initial diagnosis. I guess we had a few particularly bad meltdowns, and the realization that he's only 5, and the fear that it could get a LOT worse. I dunno, but I spent the better part of a week feeling that I could burst into tears at any moment and did a few times. That is very much not like me...I cry over sappy movies, yes, but real life very rarely. I finally told my Sunday School class, asked for prayer, and began feeling better the next day. So anyway....I'm finding myself praying more, and feeling more optimistic.

Every time I go to school either a teacher, an aide, the nurse...somebody, always stops me to tell me how much they love Justin. "He just smiles all the time", "he's the happiest kid I know", "he just lights up my day", etc... one even told me "everyone should have a child like him". I am thankful beyond measure for this - he obviously saves his worst behavior for me. I suppose that is a good thing, but it also wears on me emotionally that they get so much of the loving, happy Justin, and I get that mixed with outbursts of angry, violent, wild Justin. If only I could keep him the loving, happy, smiley boy all the time......

Facebook has taken over my life

Well, I wasn't very good at blogging before, but now I'm never here at all! Facebook has taken control of my computer...

Anyway, what's new...well, Justin is just gradually getting more and more aggressive and I had a bit of an emotional breakdown about it a few days ago. I'm better at the moment and working on a plan to try to get that under control. We are journaling everything, trying to identify triggers, searching for a behavioral therapist, and trying to get another appt with the neuro to discuss meds. We appreciate all of your prayers.

Most of Birmingham is abuzz with the possibility of snow next Monday/Tuesday. Lindsey is now nine and she has seen snow twice in her life and both were maybe half an inch. So snow is a big deal - I hate it, though. Anyway, I have to go buy carrots today just in case we need a snowman nose. :)

And it sneaks up on me again!

Every year Lindsey's birthday does this to me. I always say I'm going to plan ahead, but then Christmas gets chaotic, and then we are just trying to recover from the chaos and get through New year's, and then it's time to take down the decorations, and suddenly Lindsey's birthday party is this Saturday and I've not sent out one single invitation.
I tried to get her to have it at one of the pottery painting places, so I don't have to deal with the mess and clean up, etc, but she wants to have it at home again. She just wants a very few friends and family, thankfully.
So anyway...I guess I've got to get invites mailed out today. I so wish her birthday was maybe a week or 2 later so it wouldn't do this to me every year. But given how miserably large I was, and the fact that she was over 10 pounds, I don't think I could have survived being pregnant much longer anyway.
I think I had more to type, but suddenly J is here 'helping' me, telling me to 'push the green button'....

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.