Saturday, April 23, 2011

Highlights and Lows

This is the best I have to show you for now, just a picture from my computer cam. It isn't drastic, but I LOVE it!!!! It is just the thing I needed. Not to mention, I REALLY enjoyed having 2 hours of me time. Ahh. It was fantastic. 
Baby wanted to get in on the action. Man, I love that girl.

This is her hugging my face. 

So later on that day, after the kids got home from school, I left my sick husband to rest while I took the kids to my mom's house for fun.

Grandpa James had told Brother about a toy horse barn that Grandma Judy got at a yard sale. Brother has been anxious to see it.

Well, it is a pretty awesome toy barn. Wow! So of course after my mom saw Brother's reaction she just had to let him have it. I really wish she would have let me see it first so that I could have saved it for Christmas... it is that cool.

Anyway, just before we were leaving my mom's house my sister, Kirsten, called. She wanted me and my parents to be on the phone to talk to her.

I knew why.

You see, Kirsten has been waiting for the test results to find out if her little Melly (nickname) has Fragile X Syndrome or is a carrier.

I think I have been worrying/thinking more about it that they have... maybe. You see, when you are the first person in your family to find out that your family genetics carry a syndrome you feel like it's all your fault, as if after you, anyone else who has children affected by it, it is because you found out about it first.

The blood test takes 4 weeks to get results.

Every time Kirsten would call me with a question about Melly I would try to stay calm but, all the while analyzing whether or not that certain trait might be a FXS thing or a "normal" thing.

So when she wanted to talk to all three of us at once I knew what she was going to tell us about.

The test results.

I knew before she said it, because I didn't hear any tears or worry.

Just relief.

"We got the results back today for the Fragile X test and she is not a carrier and she does not have the full mutation," Kirsten informed us.

We all at once shouted with joy and celebration.

Immediately after hearing that, Brother ran in with bright eyes and a big smile and said, "Does she have Fragile X like me?"

My first thought was, "How did he know we were talking about Melly's results?" and my second reaction was, "Oh no, did he just hear us celebrating that she doesn't have Fragile X?"

I calmly told him, "No, Brother, Melly does not have Fragile X Syndrome like you."

He responded with a very disappointed look on his face and said "NO!"

I guess with our celebration he thought we were laughing or maybe it was his way of dealing with it, but, he kept telling Grandma Judy that it wasn't funny.

I wanted to cry but, I couldn't.

I was happy for Kirsten to not have this challenge to face.

I was sad for Brother that he wouldn't have that common ground with Melly that he always thought he would have. Even from the very start he has been so drawn to Melly... he must have known the possibility of her having FXS like him.

After I got off the phone so that I could talk to him and console him he looked at me and said, "But, mom isn't Kirsten a carrier?"

I was amazed that he even caught onto this.

He is SO MUCH SMARTER than I sometimes realize.

We explained to Brother that he, Sister and Baby were the only ones in the family who had this special trait. He seemed to be OK to know he was so special that there was only 3 of them in the family.

I am starting to cry while I am typing this.

I don't really know why.

Maybe there was a small part of me that wanted Kirsten to be able to fully understand and relate to my world. But, I feel awful for thinking that. And then I feel awful for thinking that it is awful to want someone to have a child with Fragile X Syndrome.

I LOVE my kids with all my heart and wouldn't change them for anything.

Even if I would have known before they were born I would NEVER have terminated the pregnancy. I know there is a reason why they are here.

But, I will tell you, while you are the one in the middle of it all, it is very hard.

I am so blessed to have the opportunity to have these 3 children in my life. I can only hope that they feel blessed having me in their lives.

It's hard.

It's one of those bittersweet moments.

I am SO HAPPY for Kirsten, yet, so sad for Brighton.

I know he will move on and forget about it and it will never be any major issue again.

I guess, for me, I will never forget the moment of seeing his sad look when he realized that his cousin wasn't like him.

Really, in all this, I do hope my children know, or will one day know, that we are all the same.

We are all children of God.

He loves us no matter what.

And if we know that... well, we know a lot.

9 remarks:

Bonnie@TheFragileXFiles said...

I have felt just like you. Feeling responsible for the gene, because I was the first person who had kids with FX in our family; feeling a little jealous of those who turn out NOT to be carriers or whose kids turn out to be fine. I really appreciate your honesty here.

And I have to ask, how do you manage to look so amazing with three children with FX? You don't look a day over 24.

Karen Mortensen said...

I love you hair. Thanks Bonnie for your words. I have felt those same feelings before. Thanks for putting them into words.

Mariah said...

I have no right to say that I understand that whole story, only when my sister's second daughter was born we were able to to testing before she was even born. There was this wrestle within me to want her to be born without the challenge of SMA, but there was this part of me that knew the love, Spirit and special experience that came with Taleah and all of her challenges. It's nothing you wish for and yet it somehow was. I think that Monica was the only one that understood what I was feeling in some small way.

I am sincerely grateful for Kristen.
And I love Brother for his sweet heart.

rach said...

You are so well spoken and honest with your feelings. You amaze me girl!
p.s. I love your hair!

Catanna said...

none of my family wants to even test themselves or there childern. There biggest thing is there is nothing wrong their kids. They also blame one side of the family. You see I'm the only child on my moms and the baby on my dads. So my half brothers and sisters think it came from my mom side and my mom side whitch is mostly my cousion just say there is nothing wrong. At times I want to scream it is gentic and it is in are blood lets find out so I don't feel like I'm the only one but then I think fine then I get a special angel and she is beuatiful and move on. I also found that I was the carrier and that my daughter is fully mutated. We deal day by day and on bad day seconds by seconds. Your family is beauitful

Anonymous said...

When my nephew was tested in-utero, I remember the test results bringing both tears of joy and sadness - sad that my sister and her son wouldn't be on this same journey with us, in the same way as us, joyful that my son would have a "big brother" (disguised as a younger cousin with no learning issues) who might watch over him during his life, hopefully when we are gone too. Great writing! Mary Beth

amyandrandy said...

i love you honesty in your blog it is so refreshing and inspiring. ummm...and lets not forget about your HAIR, love it! you are the only person i can think of that can seriously pull off any cut or color.

Julie said...

I love your openness and honesty, and I hope you feel some comfort in sharing these feelings. There are so many people who love and support you and your family! I admire Brother's compassion and sensitivity. He is so loving! He has a good example to learn from! I am happy for Kirsten and her baby, too.

tammy altepeter said...

i am right there with you i have two daughters 19 and 2 who carry the gene, i also have two sons age 17 and 12 who have fxs. sometimes we forget what the norm is. i also am the first one in my family with the gene.i feel sometimes even my family does not understand because they do not live it everyday. im always thankful for those who do understand and do not judge. god bless your family!