Thursday, November 22, 2012


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. 

Monday, July 30, 2012

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!

Saturday, July 21, 2012

Anticipation... 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.  ;)