Friday, September 12, 2014

Does it get easier?

It's opening night for my play.


All this time practicing and anticipating.


And I'm here in the hospital.


Not for me.

For Brother.

Don't worry, nothing bad has happened... 
well nothing that would seem worth going to the hospital and being sedated for.

Remember that with Fragile X Syndrome there comes a hypersensitivity to, well, everything.

Especially the dentist

I've spent the last 10 years holding Brother down, laying my body on top of his, with assistance for his flailing limbs.

He's too big.

I'm too injured.

So, here we are at the hospital so that he can be sedated for the work to be done on his mouth. They think from what they were able to see at the dentist office last that it will only be about an hour, but if they find more in there it could take longer.

I'll hear about that if it is longer.


OK, I'm back!

What? You didn't know I was gone? 

Well, sorry, I started getting tired eyes while I was blogging so I made myself comfortable and the next thing I know, Dr. Shepherd (Brother's Dentist) is waking me up... drool sliding down my face and all, Ya, I guess getting only 4 hours of sleep didn't quite cut it.

So he is out of the operating room and still waking of from the anesthesia in the pediatric recovery room. They'll bring him in when he wakes up. I think he's a lot like me and that waking up may take quite a while so I am sure they will bring him in eventually even if he isn't awake all the way.

Anyway, I am so proud of Brother. He was so scared to even come here but he was a trooper and really did a good job. The nurses got a kick out of his sense of humor and he made sure to give them plenty of it. It's really funny to watch a kid who has a love/hate relationship with attention.

I made sure to bring his iPod and his favorite blanket so that he would have some comforts from home and they did help a lot. I didn't know until he showed me, but he took a "selfie" of him in his hospital bed and messaged it to his friend Gracie.

It's so miraculous, surprising, heartwarming and intriguing to see my son do this. He texts Gracie quite often, I am sure it's a tad annoying for her because it can be anytime, everyday or all day but it is so fun to see his communication. How he is trying so hard to put his words into text on a screen. I love that he catches on to this day and age in all our "look-what-I'm-up-to-now" and decides now would be a good time to update his friend on what is happening in his life.

Raising children with FXS is hard, a different hard than the norm. Since Brother was young every little developmental milestone, every social integration, every physical accomplishment has been a lot of work. A LOT of work. There's pretty much not anything he does that hasn't taken complete and total attention, effort and intervention.

But, it's gotten easier now.

Not easy like, "Oh, how nice. He's a teenager and I can have him help out with family, house and chores." It's easier because there is more discovery of what he can do just because he watches and observes on his own. Easier because even though his life is hard he usually can find something fun, funny, or awkward to make a joke about. Easier because we have done enough things routine throughout his life that we can accomplish some things. Easier because he has learned to communicate how he feels most of the time, some feelings are new to him and he hasn't learned how to describe them yet.

But, today was not easy.

Waking him up at 6:30 to get him ready to go to the hospital caused panic and confusion, even with preparation the day before. Watching is panic level increase as we walk through the hospital doors and witnessing him trying to act on and remember everything he has learned to do in times of panic then look at me in desperation and fear as they insert the IV... well, it's hard. Not easy. It's times like that that I am reminded how much he really does not comprehend, yet is knowledgeable of.

He's such a hero in my mind.

He conquers so much every day.

He moves forward, sometimes, in complete fear, just because he knows he needs to.


They just brought him in from the recovery room because he was stirring a bit and they figured he might as well come in here with me since his vitals are good.

He wakes up every so often enough to say, "Hi, Momma," I hold his hand and he falls back to sleep. He even snores here and there so I know he is truly tired.

It is amazing to hold his hand. It's so big. So grown up. I can't believe I used to hold his entire hand in the palm of mine.

That's not easy...

letting go of their little-ness.

I miss that I could hold him in my arms and coddle him when he was overwhelmed and panicked about new or big situations. I used to be able to just let him hide his face in the crook of my neck while he squeezed me so tight I thought my head would pop off.

I thought that was so hard then.

Now, in the moments when he has to face life head on I think it would be easier to hold him tight and let him squeeze me unit he could calm down.

He's not just grown up. He's big. I can't carry him to the car anymore when he doesn't want to go somewhere. I have to just hope that he will understand how important it is that he cooperates.

I was nervous that he wouldn't get in the car this morning, but he has learned that he just needs to do hard things sometimes.

That, my friends, is another milestone we have been able to conquer! Even with his extreme fear of the unknown, he is able to take those initial steps to get, at least, to the beginning.

And that makes it all easier. Seeing him grow and mature. Taking on life.

He's inspring!

So I guess in some ways, it does get easier, and in other ways it doesn't.

That's Our Life and, I think, most everyone else's

I want to end with some pictures of our kids doing things that were once not so easy to do, yet seem so simple.

Brother was asked to water the new tree, bushes and veggie plants. He did it all on his own. He even has his sleeves and pants rolled up for the hard work to get done.

Sister watches things her brother does and wants to grow up to be like him. It's such a blessing to have her learn developmental milestones from he older brother who is fully affected by FXS. Quite miraculous in a way. (Her friend, JJ, even got in on the work of pulling weeds.)

We've noticed that Baby seems to be a bit more behind, overall, than her siblings were at this age, but then she sets up her stuffed animals like this and I just have to smile at the extent of her imagination and the ability she has to express it. I can't tell you how many times I have walked into her room and gotten a good laugh at her set-ups she has going in the room.

I mean, look, the dog even has "glasses" on so he can read the book.

I remember all the time spent to teach Sister how to draw a straight line, a circle, a square and a squiggly line. It was so much work and so much effort. Now she is my biggest and most ambitious artist!

Sister also used to fall apart trying to come up with the words to tell me what she wanted or needed and she can now tell me stuff like, "Mom, will you draw this CareBear on my shirt?" Pretty amazing!

Then, there's Baby. Last, but certainly not least. She's learning little by little how to communicate her needs. Sometimes her needs are nothing more than a pile of My Little Ponies. She has even discovered how to carry all of them that she wants in one haul. That takes planning and dexterity—yes, it's the little things in life that bring us happiness.

Moral to this post:

Does it get any easier?

Yes and no.

Your attitude makes the difference.

Hang in there.

Life is hard, life is great!

Life is.

0 remarks: