Saturday, January 5, 2013

When all 3 of your children have FXS...

I was asked by Bonnie of Fragile X Files to write about what it is like to have all 3 of my children have Fragile X Syndrome. This post is also featured in her writers series on her blog if you would rather read it there, or you can just go visit it anyway, because it's a great blog.

This post, for some reason or another has been hard for me to wrap my mind around.

I know there are many other parents out there who have 3 children with Fragile X Syndrome. I have met many of them. Some of them have an easier row to hoe, it seems to me, because their girls with Fragile X don't seem to be affected and are off to college and there are some who have all boys who are more affected than our only son. So it is hard to really put being a parent of 3 with FXS in a lumped category so I guess, really, the name of this post is "When all 3 of my children have FXS..."

In Our Life there are moments, and I have to look at them as moments because my days would seem so overwhelming and unproductive if I looked at the day as a whole... so, there are moments that are frustrating and irksome:

Sister bounding, bouncing and rolling uncontrollably, unable to sit for an entire meal—let alone 2 bites in one sitting.

Baby not talking to me about her needs, having to pull my hand to where she wants me to be and pointing to what she needs, yet being able to sing the theme song to Scooby Doo.

Brother fighting EVERYTHING social—wanting friends but not being able to overcome his anxiety to  hang out with them in a "normal" teenage way.

The tension between Marc and I can get pretty thick just because both of us are trying so hard to keep it together when all these little things seem to be piling up in our things-that-drive-you-crazy-after-so-long basket.

It's a daunting task to not only have to make sure one child is getting all the sensory input they need but to add 2 more to that ... just... well... I fail sometimes.

It adds to the stress when your children are so active they don't even want to take time to eat and when they do you have to cater so carefully to their aversion to certain textures, appearances and tastes. If you think it's hard to have one picky eater, times it by 3. It's inevitable that one of those will slip through the cracks and wake up in the middle of the night because they are hungry because you weren't able to figure out enough creative things or ways for them to eat that day and they just avoided food as much as possible.

It's really tough to know that your 2 daughters are both struggling with Autism on top of Fragile X, especially when you have only met girls who have Fragile X are so high functioning, off to college or at least holding a job or able to retain friends throughout high school. You wonder if you missed something as a parent somewhere along the way as to why your girls are so affected by Fragile X and so many girls seem to be overcoming the Syndrome.

It's so hard to see your 13 year-old son, who is wise beyond his 8 year-old mind's capacity but Anxiety consumes him and becomes his prison. I give Anxiety a capital letter at this point because it has become his close companion. I've always wanted my children to choose their friends wisely but this is one particular companion I wish would leave my son alone.

But, just when I get discouraged with these moments I am blessed to have the other moments.

The ones that make me laugh:
Like when my mom is reading a touching Christmas story to the entire family on Christmas Eve and Sister comes out in one of the hundreds of costumes hidden away in the back room and it is not just any costume, it is the four-armed purple alien costume. She doesn't think a thing of it and plops herself down in the center of the room to listen happily.

Or, when Baby gets a total "kick" out of certain things someone says like "R2D2" or "Let's go Party!" and she will try so hard to repeat it to you to get you to say it again just so she can laugh hysterically and goes red in the face.

And when Brother calls my sister-in-law, Chelsea, on VOXER (it's kind of like a walkie-talkie app for the iPod and iPhone) 28 times just so she can hear him play his violin several different ways.

Oh, and I love it when all three of my kids pile up and give me huge hugs and we all giggle until our ribs hurt.

The ones that make me smile:
When Baby brings me a blanket and turns her back to me and stands there while I wrap her tightly and then pick her up in my arms and "squish" her.

When Sister asks, "Mommy, do you love me?" everytime she does something questionable or she can tell that I am frustrated with something.

And when Brother tells me how proud he is of himself when he has overcome his anxiety, "I did good, huh, mom?"

There are also the moments that I cry happy tears.

I am thankful for those moments, especially because there are often frustrated or sad tears shed, it is nice to have the tender tears.

These are the kind of tears that warm your cheeks and your soul. Sometimes these tears come at the most unexpected times. Usually, though, it is when I am with my family or close friends seeing the supports we are surrounded by, knowing that we are not alone raising 3 children with FXS. That's when I cry those tender tears, I step back a moment to see that we are not alone in this journey and that so many people around us are waiting in the wings to buoy us up and carry us through the deep and there are still more at the shoreline to make sure we don't stumble in the sand.

2 remarks:

Nola Neeley said...

Loved your upbeat way of looking at life. Truly, we don't always get what we expect, but probably what we need to grow and learn. Bless your heart, I think you are doing great! From Granola 22 (22 grandchildren.

Rachael said...

Thanks Nola :) It's always good to hear words of encouragement.