See Christian and Lola's ISR video!

Friday, March 30, 2012

What kind of mother is she?

"Watch kids around water!!!"

I see this everywhere. Or maybe I don't see it everywhere, but when I do see it, I'm extra sensitive to it. It's as if it appears to me italicized, bolded, underlined, with three exclamation points.

Probably because when I see it, I'm reminded of that day and I feel like it's someone yelling at me, specifically.

Remember? Watch your kids! We don't want to have to tell you again!

It's warmer this year and the warmth came earlier than usual to some parts of the country. I've unfortunately already heard about near drownings and drownings, which are actually not weather specific but they do tend to increase during the warmer months for obvious reasons.

When I see these tragic stories online, I've ventured to the comments section and I'm reminded of what people think of mothers like me.

Why wasn't she watching her kid?!

She should be thrown in jail!

Where was his mother?!

It's neglect!

She should burn in hell!

What kind of mother doesn't keep an eye on her toddler every second of the day?

What kind of MOTHER IS SHE?

And I've seen worse. It's not surprising, but it takes me back to that time. I used to be that person. The person that rationalized why it wouldn't happen to me and my child because I took precaution xyz so that would never happen to us. It's a coping mechanism and I get it.

But then it happened to me.

The comments don't sting so much for me anymore because I've dealt (am dealing) with my guilt. I'm totally stealing this from a good friend who said having her accident happen on her watch was a gift. I don't walk around with anger toward anyone else. I know exactly what happened, there is no question. And I have no one else to blame but myself. That is, ironically, a gift. It's manageable. It's something I have worked on.

"What kind of mother is she?!"

Well, let me tell you.

I take my oldest to football practice and my youngest to ISR so she'll know how to save herself should she fall into a pool (and she does know how to save herself). I exclusively breastfed all of my children and started them on their first solids - a banana - at around six months old. I covered all of the electrical outlets with plastic covers and the bottom cabinets are also baby proofed. I put my kids to sleep on their side or back without stuffed animals or blankets in the crib to avoid suffocation. I took all my babies to baby gymboree classes and stayed home with each one of them for at least some portion of their babyhood. I questioned vaccines, refusing to consent to the chicken pox vaccine twelve years ago.

I'm not trying to prove that I'm a good mother, but I'm trying to point out that I don't consider any of the above within the definition of neglect. I did everything other mothers do to take care of their babies. I don't take comments on random articles to heart so much for myself, but I do get protective of other moms. Moms just like me. Moms who love their children, but made a mistake. Maybe there was distraction involved, maybe miscommunication, whatever the cause, it is a far cry from neglect. And to reason away the fact that something like this could never happen to you negates that there are accidents in this world. You get comfortable with your surroundings thinking you know the layout and cause and effect at every turn in your own home. And then you're proven wrong.

The worst mistake you can make is to think an accident of great magnitude will never happen to you.

Sunday, March 25, 2012

Runnin' Runnin'

Runnin' runnin' and runnin' runnin' and runnin' runnin' and runnin' runnin'


Think Black Eyed Peas.

(That first part is the song in my head that starts every time I think about the start line of a 5K. And they also blasted said song over the loud speakers at the start and finish line of the Arizona Distance Classic.)

We ran! Again! 

If you all remember, we completed our first 5K race with MyTeam Triumph last September and it was amazing. Read about it here and here.
It was so amazing we decided to give it another whirl. And this time we were going to beat our last time by trying to run as much as we could. And thanks to my new found obsession with the Instagram app, I've got some pictures I'd like to share of today!

We started out the race this morning with Mom underestimating early morning dessert chill. It was cold!

"It's cold and Mom didn't bring enough blankets!"

"And it's early!"

Time to line up at the starting line!

Ready to start! Mom and Dad totally ready. Kids...not so much.

And then we were off and running! This 5K was a lot bigger with a lot more people. There were also hills! And they were no joke! But it was a lot more fun because we knew what to expect.

Fast forward to 36 minutes and change later and we were done! And, yes, we beat our last time!

I was delirious and woohooing.

Okay, normal family pic now.

And this is Emily, Christian's PT, who ran right along side us, too! They're showing off their super cool medals!

So there you go! We had a great time and took group pictures with some of our fellow MTT Angels and Captains that I haven't seen yet but as soon as I do I'll post them!

They are all such an inspiration and they keep us going and pushing harder!

Go Christian! Go Quentin! Go Zac! Go Lucas!

Go MyTeam Triumph!
Wednesday, March 21, 2012

Place of acceptance.

Christian had a play date a few weekends ago with his buddy Quentin. It was really a double play date. Let's just say the boys got to benefit from the moms wanting to bake chocolate things and eat them with a side of wine. Lucky kids, lucky moms.

We got to talking, as fellow moms tend to do when there is chocolate and wine involved. We started talking about trying new things with our boys. But not in the way that you think.

I'm just going to go ahead and say it - the truth. Truth is, I don't want to try new things anymore. It doesn't mean I won't. I just don't want to.

Trying new things puts me in a different frame of mind. I feel like I've come into the beautiful world of acceptance. This world runs a little more smoothly. It makes for a little more calm. And it's happy there. Blissfully unaware of what may or may not send your child into a tailspin.

When I try something new, I leave that world just a little bit. I'm all of the sudden on alert for anything "new" or different. Anything "better."

Did I see it? Is that different? Has he been doing that all along? Am I seeing things? Maybe it's just because he's sick? Is that a seizure or is he excited?

I poke around, observing Christian as if he were a patient and not my son. And when things turn out differently than expected, there is a level of disappointment. Then I'm really not in the world of acceptance any longer. I've taken the off ramp and I need to pull over.

I've felt like this for a while now. At least a year. That's why I haven't been overly anxious to travel for therapies or really try anything new for improvement. It wasn't until we had the opportunity to try Ambien that I got anxious again. Anxious for better. Anxious for more.

The Ambien turned Christian into a child that was a different Christian. Not better. Just different. I didn't know him very well on Ambien. And I'm not sure it really did him any good. But what I can say is that it's been about a month since we stopped, and for the last four weeks I've felt anxious. Anxious to get my old Christian back.

In my last blog post I wrote about missing baby Christian. Well, I've also missed the Christian prior to Ambien. I feel like he's finally settling down from that experience and I am so happy to see my old Christian again. It's like a deep breath. On the exhale, comes a realization that maybe he is better. And maybe it is very much better hanging out in this world of acceptance.

I read a friend's blog (Mason's Mommy) and in it she posted a writing called I am the Child by an unknown author written from the perspective of a child. I was particularly struck by this -

My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love. I give you the gift of simplicity.

Christian's favorite thing in the whole wide world is to be held. And our arms are so important to him. He may not need Ambien. He may not need another therapy trip. But he most certainly needs our arms holding him.

So will we try new things? Sure. But I'm not anxious for it. I want to be in the happy place of acceptance. It makes me a better mom. And I think as long as our arms are around this little boy, he's happy in the place of acceptance, too.

So what's new for now? Hopefully more play dates!

Thursday, March 15, 2012

I missed him.

Lola had her first Little Movers and Shakers class yesterday! It was a long time coming as I had Gabe in this very same class as this very same location when he was about 16 months old. Christian had the same right of passage into babyhood at 6 months old. And finally, it was baby girl's turn.

She was shy at first. She didn't understand what was going on and she's younger than most in the class so she doesn't quite get the whole following directions thing. But as soon as she discovered she was required to hop like a bunny, fly like a plane, catapult through a cushioned obstacle course, and run as fast as she could across a gymnastics floor, hop, fly, catapult, and run she did.

Yes, a little girl with pink toe nails got to follow in the foot steps of her brothers.

Her brothers. Watching her tumbling through the obstacle course made me think of them. Mostly Christian, though, just due to the amount of time that has passed since Gabe attended - a mere 12 years - and, of course, obvious circumstances.

I couldn't control it. It was a mixture of nostalgic feelings any mother would have of her child when he was a baby, doing baby things and hitting baby milestones. But there were also feelings of longing and sadness. Feelings of wanting that baby back and wondering where he went.

Wasn't he just learning to crawl on that very gymnastic floor? Where did he go? Wait! I'm here. I'm in this place and I'm missing him without a choice in the matter. How did this happen? Where did that baby go?

And all of these thoughts raced through my mind at the same time with urgency. I actually thought - Wait! - as if the thoughts and memories would leave too soon before I had a chance to catch them and hold on to them with all my might.

He was just learning how to crawl. He was timid watching the older kids speeding past him. He wasn't the baby that clobbered all the other babies, attacking toys and snatching them away. He sat back and observed. And with each class he bravely moved forward into crawling territory and gained confidence in his babyhood, grabbing toys and working through the obstacle course.

Memories can be stifled for a while but they find there way back, those sneaky things. Sometimes just trickling in and sometimes like a crescendo. All at once with no room for breath.

Just as soon as I was in that place - that mixed feeling of longing and memories and wanting it all back - my eyes watered. I blinked and she was there with her pink toenails ready to show me her next move on that very same obstacle course. She deserves this alone time with me and she deserves me present. So we continued and it was awesome to watch her in the middle of the multicolored parachute. Just like her brothers. And it's so important that this becomes her thing. Her time. So that's what we'll do.

But I missed him for a second.

Be still my heart.
Sunday, March 11, 2012

The Guessing Game

Let The Guessing Game begin!

We had a three week run with Ambien. And the overall perception is that it definitely does something to his brain. I got to hear sounds I had never heard. I got to see more smiles and I might have even heard a giggle, still not sure about that.

The first two weeks I loved the Ambien because it seemed to stop his irritability in it's tracks. I would call it his "Happy Juice." It's like he would enter another world. His reactions were quicker, he had more strength. He would stop whining and crying and make other noises. Just like in the stories I've read about, it was like a light switch. It would turn on thirty minutes after giving it to him and dim out about two hours later.

But then the whining and crying came back. And it seemed almost worse. My theory is that the Ambien would make him so tight and toned out that his legs would literally tremble. I think physically, it made him sore, which caused more pain and whining, possibly.

I also think it increased and/or strengthened his seizures. This is not a surprise to me. Any time you mess with an already fragile brain, this is the risk you take. I know this. But the benefit has to be greater than the risk. Is that the case with Ambien? Are we getting greater benefits than risks in terms of seizure activity? I'm not so sure. And it does really put into perspective how mild and, dare I say, under control, his seizures were, now that I see how they've amped up.

Over the last week, we decided to stop the Ambien, due to the increased irritability and seizure activity. I've been observing Christian every day and he's been sort of "off" ever since he was on the Ambien. He's more irritable. His sleeping is off. And the seizures are a stronger version of what he usually has. I've been observing to see if it changes, if he needs to stabilize, or if we need to take further action.

The good news is that he's still moving and looking and reaching. None of that has gone away. He's still got his skillz! And I'm still observing, still unsure. Blaming this all on Ambien and then tonight he comes down with a snotty, green nose. Of course he does. So is it really that something else was brewing all this time? Welcome to life with a non-verbal child - otherwise known as The Guessing Game.

As you can see, I'm stuck. I'm willing to restart the Ambien just to see if that is really what's causing the shift in well being. I mean if he continues or gets worse, that means it's the Ambien, right? Yes, it does give me more smiles, bigger smiles! But I don't want to push this at the expense of his physical comfort. There are twenty-two more hours in a day, and, although those two Ambien hours are very interesting and revealing, Christian's overall contentment is what is THE MOST important thing for those remaining twenty-two hours.

What to do? What to do? So far, it will be waiting to see if he's coming down with something. Because if that's the case, it will explain this last week. If not, The Guessing Game continues.
Saturday, March 3, 2012

This is your brain on Ambien.

We've been using Ambien for about three weeks now and I've got some things to say about it. Nothing definitive. And maybe nothing that even makes complete sense. But I wanted to share.

Ambien does stuff. There's no denying that. There is an effect. I don't have to look for it or figure it out. About twenty minutes after it hits Christian's system, he is different. The look on his face, in his eyes, his heart rate, his body - it's all very different.

Noticing there is a clear as day difference is the easiest part. There are so many therapies and medications that I've had to hem and haw and make sense of whether or not they really have an affect. Not Ambien.

But I still can't make sense of it. I gave him a dose during OT and speech so they could witness it for themselves. They saw differences. But they couldn't make sense of it either. It's like there is too much going on at once to even give any yay or nay opinions on what we're seeing.

There is more movement, but more involuntary movement. Less coordination, but more strength. A lot more tone and posturing, but using it to roll. There is focus in his eyes, but it's hard for his body to relax. He's constantly moving. It's amplified disorganization. He's wired, there's no doubt about that. He makes sounds I've never heard before. He smiles more. His heart rate increases and his cheeks flush.

In about two hours he comes back to regular Christian. Regular Christian has more accuracy, more range, more relaxation, but movements are slower, far slower, and less consistent. Regular Christian floats in and out of attention.

But today, we tried Ambien in the morning. I didn't want to try it in conjunction with PT because his tone is just so high that he wouldn't be able to stretch or relax at all. As he was on his way back to regular Christian I bounced him on the yoga ball, which he usually likes. He's also always likes when we take his arms and pat the ball like a drum. So as I was drumming the ball with his hands, his hand opened up and he leaned into what we were doing. Then he lifted his head and gave me the biggest smile he's given me to date.

I cried happy tears.

I tried to duplicate it. I balanced him on the ball, tried my best to drum the ball and take video at the same time. Ummm, no. It was not happening. The moment had passed. But it's mine forever.

So I wanted to show you all what Christian looks like on Ambien. After watching the videos I decided it really doesn't do the actual affect of Ambien justice. Especially if you don't know regular Christian very well. But I'm sharing anyway.

Remember...these movements are very subtle and can be very slow. So if you're in a hurry, keep it moving!

This next video is of Christian's "rolling." I put rolling in quotes because he uses all of his extension and tone to do this. This isn't surprising because his tone and extension are triggered whenever he tries to move. This is just how Christian's brain thinks the body should move. So this "rolling" is not the PT standard for proper rolling by any means. But he does it. And Ambien gives him the extra tone and strength to get completely over to his back. It's not one complete movement so bare with the video. It will come.

Wait for

Are we going to stick with Ambien? Jury is still out. I'm not sure all that extra tone and posturing is good for him. And, of course, with brain stimulation comes more seizures. It's just law - when the brain is messed with that's what happens. (You probably noticed a couple of jerks on the videos.) To be continued...again...

And just for some comic relief, here's a video of little sister. Going through the videos, I forgot I took this one and it made me laugh all over again. Didn't you know? Lola is a budding superstar!

Popular Posts