Showing posts with label Giveaways. Show all posts
Showing posts with label Giveaways. Show all posts

Monday, July 11, 2011

The Things No One Tells You

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Please take a few minutes to read my previous post about Fragile X and comment to enter the giveaway.  I will be randomly choosing a winner on July 22, 2011 - National Fragile X Awareness Day!

I often sit back and wonder what I would have said if someone told me what my life would be like with Ayden.  How the person I was then would have reacted to the news the my 4-year-old son barely said five words.   Or that I would be sending my three-year-old son on a bus to school, praying that he would be okay.  About how we deal daily with screaming, whining, and tantrums that include hitting, flailing, and sometimes even biting.   How the hitting, flailing, and biting aren't always related to tantrums, but often to anxiety or even to extreme happiness. 

I'm not very confident in the person I was before I had children.  I'm not sure I would have handled it well, because I still struggle, especially with patience.  I always knew that being a parent required sacrifice, patience, and lots of hard work.  I watched my mother do all of these things with grace as we grew up.  I just never understood the full scope of those things until Ayden, because how can you?  Some days I feel as though I will fold under the pressure.  I think of the list we have for Ayden of what we need to work on, and I panic.  I can't even being to count the amount of times I just feel like I'm not enough, that no matter how hard we work it won't be enough for him.  I worry that someday he will look at me and tell me I should have done more and that his life could have been easier if I had just done more.

I think every parent struggles with these feelings in some way.  I reflect on all the advice I was given while pregnant with Ayden - because anyone that's been pregnant knows everyone has advice for you!  (Even that lady behind you at the grocery store you've never met before).  I wonder why no one tells you to find what balances you.  To make sure from the beginning that you find that perfect amount of time that you keep for you so you don't feel like you're only a mother, but to remind you that you are also a wife - and more importantly you are, well, you.  I struggle with the balance, all the time. As a FXS carrier, I know I need to be more mindful of this because carriers are more prone to depression. I try to take time for me, but it always seems like there is something to clean, dinner to cook, a diaper to change; however, I find myself happiest though when I do take that time.  Even if it's just taking a long shower after the kids are in bed, it's time for me to clear my head, to refresh, and to reload on the patience I will definitely need for the next day.
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Friday, July 8, 2011

Do you know about FXS?

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Having a child with FXS, it's painfully eye-opening how many people just have not even heard of Fragile X, let alone know anything about it.  Fragile X Awareness Day is this month, so I decided I'd be doing a few posts to educate those that may not know anything about it.   I'll start with just a few simple facts today, but I want to challenge each person that reads this to share the link with at least one other person who has not heard of Fragile X and to comment below when you do.  ((Make sure you read all the way to the bottom so you don't miss out on the giveaway!))

Did you know?......
  • Fragile X is the number one cause of inherited mental impairment.
  • Fragile X is the most common known cause of autism or autistic like behaviors.  The Fragile X gene is the cause for autism in 2%-6% of all children diagnosed.
  • There is no cure for FXS, those that are affected can take medication to help with the side effects but will live with it for their entire life.
  • Fragile X is caused by just one gene.  This gene, FMR1, shuts down and fails to produce a vital protein.
  • Fragile X affects 1 in 4000 males and 1 in 6000 females of all races and ethnic groups (source CDC). About 1 in 259 women carry fragile X and could pass it to their children. About 1 in 800 men carry fragile X; their daughters will also be carriers.
My goal this month is to spread awareness.  Can you help?

If I receive at least 25 comments by July 22 (the comments must be 25 different people), I will be randomly drawing from the comments listed for you and the person you shared the link with to each receive two dozen homemade cookies or brownies delivered directly to your door.**  That means for each friend you share the link with, you have a better chance to win some yummies!  For those out of state, fear not - for I will pack up the yummies and send them to you by mail.  Unfortunately, you do have to live in the continental US to win. though.  Both you and the person you shared the link with must comment in order to win - make sure your friend states in their comment who shared the link with them!     After some input from people reading this, I've decided to get rid of the stipulation that both people must comment to enter the contest.  If we reach 25 comments, I will pick a random winner from the comment.  If the random winner was sent here by someone else and mentions that person's name, I will giveaway a box of yummies to each.  **edited July 11 7:30 AM EST**

Please also take a couple seconds to "attend" the National Fragile X Awareness Day event on Facebook.  The event is located HERE

**I will also be willing to do a cake or a dozen cupcakes in places of the cookies/brownies should the winner choose, but for those that would need the goodies mailed, they would have to remain unfrosted**
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