Saturday, December 22, 2012

Joining the Club

When you have three children who have Fragile X Syndrome you have this weird and annoying tendency to analyze every child around you, stranger or familiar, and wonder, "Could they have Fragile X?"

I can't help it. It's this innate instinct, honing out and looking for the "one" that might have been missed. I don't think it's because I want all children to be like my children. I think it is because I don't want any other parents to wonder like I did, "What is wrong with my child?"

That was my thought process back then...

"What's wrong with Brother?"

For 5 years my world was filled with focusing on all the things that were "wrong" with my first born child while the whole time I worked and fought so hard to show every one what was so "right" about him. The "rights" didn't often outnumber the "wrongs," but they did outweigh them.

Brother couldn't nurse well as an infant which brought on jaundice and many long hours feeding him with a syringe filled with milk I had pumped all because even the bottle was an undesirable task to him because of his oral sensory issues and extremely low muscle tone. He couldn't roll over, hold his head up very well, walk, crawl, run, heck, he couldn't even fall right... really, he didn't have the inborn sense (for most) to put out his hands in front of him when he fell! Did you even know that putting your hands out in front of you was even a developmental instinct? Trust me, it's one you want your toddling toddler to have because face first into the cement is a really awful way to break a fall.

But, Brother attracted smiles everywhere we went. People were drawn to that little boy.


Like magnets.

I had this little baby hiking back pack that I would put him when I went grocery shopping or wherever and people were always smiling at me (him), waving at me (him), and old ladies and gentlemen would stop me just to be able to tell me what a strong and happy spirit Brother exuded.

Those were the "rights."

The undeniable love for life he showed. No matter what, he was smiling. He made us SO HAPPY!!

So when my sister's little boy was born I, of course, immediately tried to determine if he had Fragile X.

When I first saw him it kind of set me back.

It was like looking at Brother when he was a baby.

I listened to my sister and her husband explain to others what a calm baby he is and how he is just so tired all the time but when he was awake he was always so happy and rarely cried.

It sounded like the exact things I said about Brother when he was a baby.

I kept telling myself to stop analyzing everything about little Zac. "It has become my obsession!" I thought to myself. I needed to stop looking at every child wondering if he or she has Fragile X.

So I distanced myself a bit. I usually love to see babies but I couldn't bring myself to visit Zac because I couldn't stop analyzing him and I didn't like that about myself. But then came the day when I offered to take his newborn photos. He was about 4 weeks old at this point.

I was analyzing everything about him the entire time. I was reminded of Brother with every thing he did.

He made me smile.


Good grief, he was absolutely adorable!

I mean look at this! How can he not make you smile?
I was the first person my sister, Kirsten, called on Monday, December 10th.

She had the results from Zac's blood test in her hands.

"He has Fragile X."

We both sobbed.

It was a surreal conversation for me.

I never thought that I would be talking to my own sister about having a child with Fragile X.


I had hoped that because God had given me 3, that no one else in my family would have to do it.

Then, it hit me.

She was going to understand my world more than I would have ever dreamed any of my siblings would.

She would have someone to guide her through all the world that is Fragile X.

She wouldn't have to wonder for 5 years, "What is wrong with my son?"

She knows now. After six weeks. She knows Zac has Fragile X.

But, because we know what Fragile X is, we know that Fragile X isn't a blueprint to what our children will do or become but only a field guide to what to look for and appreciate.

I pray that Kirsten, my sister, will be able to find joy in this different journey than she has had with her daughter who is neither a carrier of Fragile X nor full mutation. I pray that she will find the strength to focus on the "rights" and not just the "wrongs."

But, I thank Heavenly Father for giving us the opportunity to have Zac in our family.

I wish I would have taken a video of Brother when I informed him that Zac has Fragile X... He smiled so incredibly big and began jumping up and down with joy, squealing with delight! It was priceless and unforgettable. It was like I had just told him that Zac just got a special pass to be in his club.

Sister's reaction was funny. I told her, "Sister, Zac has Fragile X," from another room and I heard her start to cheer, "Yes. Yes... wait... what is that? ... oh ya... Yes! Yes!"

Their reactions were priceless.

And then that gave me an insight that Zac's diagnosis is not the news of doom and dispare but he just joined a very special club of the elite.

I saw this picture today and thought about our world before we ever even knew Fragile X existed in our family.
My Dad, my Mom, Daniel, me and Jessie at Easter time in our front yard... Aaron and Kirsten weren't even around yet. (Check out my awesomely curly bangs... gotta love those pink sponge curlers.)
(Yes, my mom has an Easter basket hanging around her neck... she's funny like that.)

Me, holding my baby sister, Jessie. (I would have to say that my kids look a LOT like me!)
We were so happy and blissfully oblivious to Fragile X then.

But, look at my entire family today...

Our family is just as happy and blissful...

I would never, ever, ever, trade spots with anyone else in the world if it meant leaving this family and the love we all have for eachother...

Fragile X included!

Fragile X Syndrome is the world's leading cause of inherited mental impairment and the leading known single gene cause of autism. More information can be found at

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