Archive for March 11th, 2008

What to Write!?

I wanna write but I don’t know what to write.  So this will probably be a rambling mess as I dump my brain out.  I’m so sorry in advance.

I feel weird this morning.  It’s not because I had to take a pain pill either.  I just feel “odd.”  It’s almost like I’m slightly out blah-blah-blah.gifof my body because if I’m in my body it will hurt to much physically and mentally.  I told you it was odd.  I’m sure the physical part is because of the hysterectomy.  I think the emotional part is because my Aunt Jo came by to visit this morning.

Aunt Jo is the only biological relative that I have a relationship with.  She is my grandmother’s sister.  Aunt Jo doesn’t have a relationship with any of my relatives for a lot of the same reasons that I don’t.  Coincidentally, this is the side of the family that the fragile X gene runs through but that is not why none of them speak to each other.  It is more of a lies, backstabbing, abuse kind of reasons.  Like me, my aunt is keenly aware of what these people have done to hurt her and distances herself from them to protect her soul.  Though I totally love to see her, the sight of her reminds me of what those other people did to me. 

I also feel a little odd because I’m really scared of my doctor’s appointment Monday.  For one, it is an internal exam.  I can’t say “Ouch” enough on that one.  I’m scared that my doctor won’t let me go back to work yet and, then again, I’m scared that she will.  Everything has pros and cons and I’m not sure what I am ready for.  I know what my life is ready for but that is about it.  I’m worried that I may have to stay on the estrogen but at the same time worried I will have to get off.  Once again, pros and cons with either decision.  This is one of those situations that I need to lay at the Lord’s feet and trust his decision.  But I’m having a tough time losing that control over the issue even though I don’t have control of it anyway.  I know, I’m a mess.

I’m also really busy today, though writing a blog post doesn’t seem like it.  I think I needed to blog to dump all this out of my brain so that I can focus all that I have to do.  I have some reading to do for English and Psychology.  I could probably get my Word 2007 assignment done today as well.  I need to get the snack schedule finished and printed out for Rachel’s soccer team but I’m waiting for the coach to call to confirm what I need to actually schedule.  I also found a free website where you log it all in for the team and folks can just go there if they lose their paper.  I think I may do that too.  We are such a technological age that people don’t keep up with paper as well as they do websites.         

*  *  *

Ya know I think I know why Aunt Jo made me sad.  And she didn’t actually make me sad but it was a story she told that made me sad.  Her son had a child when he was quite young and gave him up.  The child (who is now 27) found her and her husband a couple of years ago.  I couldn’t help but think about why my biological mother won’t find me.  I know she loved me.  I have pictures of us together and letters that she wrote.  I can see that she at least cared.  I also think that is why she “abandoned” me.  I hate to use that word because she left me with the people she trusted the most and I can’t quite see why.jpgthat as abandonment.  Every major age milestone I think that this will be when she decides I’m old enough for her to come find me: 13, 16, 18, 21, 25, 30….but nothing.  I have considered creating a blog where I will put pictures of her, the letters she wrote, and information that I know about her in hopes that someone will know her.  But with concealing our identity I have some reservations about it. 

*  *  *

I also feel a little odd because of the way God answers prayers.  Last week, I prayed that Kevin would find a job that would serve the needs of our family and Kevin would enjoy doing.  I believe working should be enjoyable since we spend 1/3 of our life there.  Kevin and I were talking yesterday about him returning to a company he was at before we met.  Totally out of the blue this company just called us asking if Kevin would like to return.  They found his resume on-line.  Crazy huh!

*  *  *

I started reading the book, Dear Megan: Letters on Life, Love and Fragile XI am sure some of you gasp because after 10 years of fragile X I should have read all the books but I haven’t.  I actually didn’t start reading the books until about 2 guide.jpgyears ago.  I wanted to learn from people and experience first.  I started looking at the books for new ideas and reaffirm what I am going through.  The first book I read was Children with Fragile X Syndrome: A Parents’ Guide.   I should use the term “read” loosely.  I started to tackle it with a vengeance, about two years ago, but it made me really depressed.  It is one thing to live the fragile x life…it is another to read about it!  I had to step away from the book.  I never have read it from cover to cover.  When I feel inspired I will pick it up and flip through until I see something that may be interesting or pertain to our life.  I’ll read it, discuss it with Kevin, and then lay the book down for a few more months.

dear-megan.jpgWell, Dear Megan, is a book I think I can read from cover to cover.  In a sense, it is like our blogs.  It is two moms letters that they are sending back and forth about their lives with fragile X.  It is very interesting.  In the introduction to the book one of the mom’s state: “For one thing: lots of us Fragile X carriers are know to multitask.  The explanation for this, I suppose, is that we have trouble concentrating on one thing and find it less stressful to scatter our attention and focus.”  Talk about hit the nail on the head.  As you can tell this is my day today.  But I do this everyday, especially at work.  My assistant trips out because I can be doing morning work, setting up a meeting, blogging and reading the news all at the same time and I don’t screw any of it up.  She is in awe but I have to do it.  I go crazy if I don’t.  Like right now my mind is randomly jumping from one thought to another, but I am also studying my English book, reading the news, eating cereal, loving on my wienie dog, and emailing friends.  And that is normal for me.  Kevin doesn’t even try to keep up with me.  I think it stresses him out to try :lol:

Sorry for the long post and all the crazy randomness :)   I think I need a nap :lol:

8 comments March 11, 2008


Autism & Fragile X

C’est Moi


Overly happy, married, working mom to 4 kiddos. This is our journey while working with fragile x syndrome.

Who are these people?!

all names changed to protect our family
  • Kevin ~ dad
  • Beth ~ mom & fragile X carrier
  • Lauren ~ 17 & in 12th grade
  • Austin ~ 14 & in 9th grade
  • Matthew ~ 13, in 7th grade, has full fragile x mutation, and autistic tendencies
  • Rachel ~ 10, in 5th grade, has full fragile x mutation, and autistic tendencies
  • Theresa~ Beth's best friend since 6th grade & her biggest supporter

wanna email me directly?

Be nice or I'll spam you ;-)

Click Here to Email

Fragile X Webring

Fragile X Webring
Previous | Home | Join | Random | Next

Check out Past Posts!

Wanna see every post I’ve ever written or start at the beginning…

Taggage

I've been encountered on

  • 99,165 occasions.

Family blogs

For more information:

People with a FXS link:

Watch videos at Vodpod and other videos from this collection.
r-word.org

what you've been saying

ME on OMG she has BMG!!
Cindy on Catch-22
fragilemom on WW: The Original Bus = Short…
fragilemom on My favorite season has ar…
Jana on Bye Bye FXSmom
Jennifer on Bye Bye FXSmom
Umma on Bye Bye FXSmom
Russ on Bye Bye FXSmom