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. :-)
Welcome!
I need a new blog title, but waiting for inspiration. :) In the meantime, this is a blog about our family, having a child with Fragile X Syndrome, and just life in general.
Followers
Tim and the kids
Waiting for a parade at WDW.
The whole family plus a mouse!
We had an awesome time at Disney this year! Justin was on cloud nine meeting his favorite characters!
About Me
- Leanne
- Happily married 19 yrs to Mr Right. I'm a SAHM to my 12yr old drama queen, princess Lindsey and my 9 yr old little buddy Justin.
Justin and mommy
Uncle Scott
My brother Scott also has Fragile X, but was undiagnosed until a few years ago when Justin was diagnosed.
The Top Ten Things You Should Know About Fragile X Syndrome
By Mary Beth Langan and Sally Nantais
1. It’s genetic.
2. If a woman is a carrier, she has a 50/50 chance of passing it on to her son(s) or daughter(s). 1 in 100 to 200 women are carriers **.
3. If a man is a carrier he will pass it only to his daughter(s), and they will only be carriers. 1 in 800 men are carriers.
4. Fragile X Syndrome does not discriminate; it doesn’t care which ethnic group you belong to.
5. Fragile X Syndrome is a spectrum disorder. Symptoms may vary from mild learning disabilities (including shyness and social anxiety) to severe cognitive impairment (mental retardation).
6. Premature Ovarian Failure, more commonly known as early menopause, is a condition that affects 20-28% of the female FXS carrier population.
7. Fragile X-associated Tremor/Ataxia Syndrome (FXTAS), discovered in 2001, is a neurological disorder that can involve tremors, balance irregularities, difficulty walking and dementia which sadly is often misdiagnosed as Parkinson's and/or Alzheimer’s. This condition is present in some older FXS carriers (typically after the age of fifty), usually in males but FXTAS can also affect female carriers.
8. There are minor physical traits noted in many persons with Fragile X Syndrome, but not in all. These are traits which may also be present within the typical population, nothing unique which would necessarily indicate FXS testing is necessary for your child.
9. When testing for Fragile X Syndrome (FXS), it is critical that the correct tests are ordered – the Fragile X DNA (Southern Blot) and PCR analysis. Inaccurate results occur far too often with the generic chromosomal panel. Test for FXS to obtain a diagnosis or to rule it out. If you don’t have what may be the correct diagnosis of FXS, then you will never be aware of improved treatments or the cure when it’s found.
10. Where to go for the most accurate and up-to-date information on fragile X syndrome:
www.fragileX.org, the National Fragile X Foundation
www.FRAXA.org, Fraxa Research Foundation
www.conquerFragileX.org, Conquer Fragile X Foundation
** American Academy of Family Physicians, News and Publications, Vol. 72/No. 1 (July 1, 2005) http://www.aafp.org/afp/20050701/111.html
Mary Beth Langan and Sally Nantais are both Fragile X Syndrome carriers; each has a son with Fragile X Syndrome. They can be contacted at mblangan@hotmail.com and sally_nada@juno.com
1. It’s genetic.
2. If a woman is a carrier, she has a 50/50 chance of passing it on to her son(s) or daughter(s). 1 in 100 to 200 women are carriers **.
3. If a man is a carrier he will pass it only to his daughter(s), and they will only be carriers. 1 in 800 men are carriers.
4. Fragile X Syndrome does not discriminate; it doesn’t care which ethnic group you belong to.
5. Fragile X Syndrome is a spectrum disorder. Symptoms may vary from mild learning disabilities (including shyness and social anxiety) to severe cognitive impairment (mental retardation).
6. Premature Ovarian Failure, more commonly known as early menopause, is a condition that affects 20-28% of the female FXS carrier population.
7. Fragile X-associated Tremor/Ataxia Syndrome (FXTAS), discovered in 2001, is a neurological disorder that can involve tremors, balance irregularities, difficulty walking and dementia which sadly is often misdiagnosed as Parkinson's and/or Alzheimer’s. This condition is present in some older FXS carriers (typically after the age of fifty), usually in males but FXTAS can also affect female carriers.
8. There are minor physical traits noted in many persons with Fragile X Syndrome, but not in all. These are traits which may also be present within the typical population, nothing unique which would necessarily indicate FXS testing is necessary for your child.
9. When testing for Fragile X Syndrome (FXS), it is critical that the correct tests are ordered – the Fragile X DNA (Southern Blot) and PCR analysis. Inaccurate results occur far too often with the generic chromosomal panel. Test for FXS to obtain a diagnosis or to rule it out. If you don’t have what may be the correct diagnosis of FXS, then you will never be aware of improved treatments or the cure when it’s found.
10. Where to go for the most accurate and up-to-date information on fragile X syndrome:
www.fragileX.org, the National Fragile X Foundation
www.FRAXA.org, Fraxa Research Foundation
www.conquerFragileX.org, Conquer Fragile X Foundation
** American Academy of Family Physicians, News and Publications, Vol. 72/No. 1 (July 1, 2005) http://www.aafp.org/afp/20050701/111.html
Mary Beth Langan and Sally Nantais are both Fragile X Syndrome carriers; each has a son with Fragile X Syndrome. They can be contacted at mblangan@hotmail.com and sally_nada@juno.com
Awesome Fragile X related blogs
Lindsey and Justin
Christmas 06
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