Friday, June 25, 2010

Faces of Fragile X

Yay! I did it! We got the annual Fragile X Family Picnic done! It took a lot of planning on my part but, it went well, even if the rain did force us indoors.

The plan was to have the kids ride our horse and have a BBQ in the back yard...

I thought bringing in a variety of rocking horses was a funny idea, and the kids loved it.

Above is Brother. Man, that kid is so good looking! I love his ears. And yes, they are big. That's why I love them. He had so much fun. My dad just loves to be there to help him. I love the picture in the top middle of my dad and Brother. It goes to show you that my kids really do look like my side of the family... genetics... tee hee!

Gallery Image Photography did a great job taking pictures inside a poorly lit church building. I was happy with all the images!

Baby and Sister were having a great time too.

And I have to thank all those who helped me with this party. It was an undertaking and I couldn't have done it without all my family and friends who helped! Thank you!

Even Brother's friends helped. And even 18's friend helped! My mother and father-in-law, my dad and mom, all my sisters and brothers (yes, "all" —my brother Daniel, now living in Florida, donated the bounce house to us to use for the Fragile X Association parties).

We had lunch, face painting, bounce house, rocking horses, coloring, bean bag toss, and socializing.

I cannot express enough the love and support I feel from my family and friends. I am truly blessed. I was so warmed by the unquestioned help I received. I know it is because they all love my children. That, in and of itself, is what warms me the most. Embracing my children, regardless of disability or ability, that is selfless to me.

My family is consistently there for me when I need them or when my kids need them. And, sometimes, I am ashamed to admit that it is often that I need their help. My eyes get a little teary as I think of the sacrifices they have made to help my and my family.

Most of all, though, my husband. What would I do without him. He is there by me, day after day. He sees me at my best and my worst. And when I trully felt at my worst, knowing that I was the carrier of this genetic syndrome and have passed it to all 3 of my children, he has never left me, blamed me, or accused me. It is said that families who have children with autism or autism disorders often end in divorce. I am so thankful that we are not among that statistic. (No, Fragile X Syndrome is not autism. They can have autism along with the FXS, and even without the autism they still fit on the spectrum.) He has given up many things to be able to father these children by my side day in and day out. I have the utmost respect and love for him. We have many sleepless nights with Sister and Baby up at rotating times in the night. We give up time with friends to keep a steady routine for our kids so that we can actually feel somewhat "normal." We spend countless moments with Fragile X Syndrome.

It is hard. Really it is.

That is why I write this blog so dedicatedly. I do it for anyone who wants to understand how a family survives with a syndrome that so closely mimics autism but, also has it's additional and different challenges of low muscle tone, connective tissue problems, double jointedness, hyper-arousal, speech delays, physical delays, and knowing that there is a 50/50 chance of passing on the gene if you are a female carrier and a 100% chance of passing it on to your daughters if you are a male carrier.

I want to help inspire or just raise awareness about this. If that means that I air my dirty and clean laundry to the public and help one family in this world then it is worth it to me.

I implore to any of you who read this and are carriers of FXS, don't dispair. God has a plan for you and any children you may have or adopt. Know that it is all between you and God whatever your decision may be. Science says, "no" and God asks us to "have faith."

Every entry in this blog may not always refer to FXS but, you have to realize that, to me, everything refers to FXS. It is my life and is always on my mind. That does not mean I always live in dispair. More often, it is hope and faith that I live with. And sometimes it is complete and total aw that I have the opportunity to watch 3 children with a genetic disadvantage make it their advantage. I also am so happy to know that ALL those who know and love my children—family, friends, or readers—LOVE my children for who they are not for what they have. Bless you for loving them. Thank you.

3 remarks:

Karen Mortensen said...

I am speechless. All I can say is wow and amen.
I am starting a new project soon that I would like to tell you about. I am calling it Welcome to Holland. If I find out about someone who has a special needs child I am going to send them a copy of the poem. It will be a part of my blog I Made It Through the Rain at
Please help me spread the word. Thanks so much.

Rochelle said...

I love this post, I love you and I love you cute little kids!!!! Well said.

Suzy said...

Rach- I had never heard the statistics for passing on Fragile X. Are these statistics for passing on the full mutation or for being a carrier? How does this affect your family, like your siblings? I would be curious to learn more. Where could I go to do that?