Archive for October, 2013

Update

I just wanted to give you a quick update on Chloe.
As you may have been aware, Chloe has continued to regress in her walking over the last 6 months and longer. It continues to get harder and harder for her. Doctors have no clue why. Their best guess (and the best case scenario) is that her muscles have not been able to keep up with her growth spurts. Acting on that assumption, we have been doing some pretty intensive physical therapy and stretching/strengthening exercises. She also received some botox injections last week to help loosen those muscles for a few months. Her walking may very well get worse before it gets better– it’s all part of the process.
Truthfully, the onset of puberty may also be playing a role in this whole thing. We just don’t know.
Also, yesterday she failed her swallow function study, meaning she can no longer drink thin liquids. She aspirates thin liquids (water, juice, skim milk)– they go down into her lungs instead of her stomach. So we will need to go back to thickening any of those liquids that she drinks.
We haven’t had to thicken liquids in several years. It makes me mad, actually, that we have to go back to doing that. It irks me that something Chloe had overcome and beat has come back to cause problems. I threw a couple of emotion-spewing temper tantrums yesterday after the news, very much like a child would throw a tantrum. I hate it.
The good news from the swallow function study is that she coughed when she aspirated. That is an improvement from when she was younger — she was a silent aspirator; thus, we never knew when she aspirated or not. So at least she has a better cough reflex.
In all honesty, it is troubling that she has regressed in both of these areas at the same time. We are just praying that whatever is going on in her body can be stopped and can be reversed. Feel free to join us in praying for her if you want.
Just another example of life without a diagnosis… Is this the next step in the progression of her unknown syndrome? Or is this simply a reaction to puberty that she will be able to overcome? Or what is it exactly? and what’s the best way to treat it?
Since I’m a big don’t-own-it-til-it’s-yours person, we will just continue to work hard to combat all this stuff. Hopefully she’ll beat it. She is an amazing kid and the hardest worker I know — she definitely endures through the pain. Although she’s never said the words, I think one of her mantras that she knows is truth is “No pain, no gain.”
Keep it up, kid!

The Secret

Recently found this post. I wrote it when I was in the thick of it. But now that I’m presently not right in the middle of it, I thought I’d share it. It’s real….

It is lonely and dark. It is scary and unknown.

It isn’t talked about. It can’t be shared with people. Because no one understands.

It totally controls your life and your world. It’s unpredictable and always, always present…just waiting to flare.

It makes you scream and shake your fists. It makes you cry and fight back violent tears.

It makes you feel desperate and crushes your breath.

It makes you want to stay in the safety of your own home. Except it’s always there, too, in your home with you. Staring you down. Threatening to attack.

The time bomb. The dreadfully thin ice.

Mental illness is a beast. It rears its ugly, evil head and makes victims of the whole family.

The hardest thing is the loneliness. And the silence. And the pretending it’s all okay. And pretending it’s not there.

Hating the power of the illness but fervently, passionately loving its victim.

It’s dark. It’s scary. It’s lonely.

And it’s so powerful and cruel.

Praying for it to be broken and for my family to be set free.

Stuck!

Well, once again, I’m having to forfeit that elusive, coveted prize of Mom of the Year. I know that most moms would not admit the story I’m about to tell. But since you’ve all been sworn to secrecy, I feel like I can share one of this week’s adventures.

My van was in the shop because of some brake trouble. I had borrowed my dad’s truck to gather the kids from school that afternoon. While we sat outside Zach’s school waiting on him, Chloe explored the truck, crawling to the front seat and checking out the buttons and such. It was fine; we had time.

But when Zach came out and it was time to go, Chloe was reluctant to get in the backseat and buckle up. She headed to the backseat…only she went head first over the middle console, into the floor of the backseat.

I quick-as-lightning grabbed her feet as she slid to the floor on her head.

While holding her feet up, I surveyed the situation.

  • First observation: there is NO legroom in the backseat of a pickup truck so Chloe’s head and face were squeezed pretty tightly between the front and back seat.
  • Second, if I loosen my grip on her legs, it will NOT be good for her neck.
  • Third, I wasn’t sure that there was room to maneuver her body down along the floorboard of the backseat.
  • Fourth, no matter how hard I pulled, I couldn’t lift her back into the front seat by her legs.
  • Fifth, this was a very funny predicament that I wish were on video.

By this time, Chloe, while standing on her head in the backseat, had located the cup holder drawer near the floor and was opening, closing, opening, closing while I held her feet in the air and worried about what to do next.

Zach and I were laughing and working hard to come up with a plan, but truth is I was worried about Chloe’s neck…and there was a line of cars behind us at the pickup line. And Chloe was still standing on her head….

I ordered Zach to hold Chloe’s legs. Tight! Don’t let go! And I jumped out of the truck and slid the driver seat up as close to the dash as I could. Then I ran around to the other side of the truck and slid the passenger seat forward, too. Scooting those seats forward gave a lot more room in the back, but unfortunately, the middle section of the front seat — the one behind which Chloe’s face was squished — doesn’t slide forward! Ugh.

We were left with no other choice than to attempt to lay Chloe on her side in the backseat. Very carefully (between our extreme laughing fits!!) Zach and I worked together to get Chloe down on the floorboard of the backseat. It was a success.

But she was still stuck. Her head was still tightly squished between the front and back seats; one arm was under her body, wedged tightly and rendered completely useless…. We were still in a predicament.

I pulled her one arm…nothing. I ran to the other side of the truck and pulled her two feet…nothing. She was wedged tightly. She had become one with the truck and there was nothing we could do to save her. We were really laughing now!

In that moment when I was trying to decide whether to call the fire department to free my girl or to drive somewhere out of the pick up line and try to pull her free– it was in that moment that I gave up claim of ever winning the Mom of the Year Award EVER. Because it was in that moment that I stopped…and took a photo.

Yes! I did! I know. It’s terrible. But I’m a blogger…. 😉 And it was truly funny. And I knew that Chloe was not in any real danger. Truth was she was just wedged tightly, and I knew that worst case scenario, we could grease her down and pull her out! So I took a photo.

And now you’re glad because you get to see it and laugh. 🙂 So you’re welcome!

Thankfully, soon after taking this photo, I must have pulled her at just the right angle because she slid out more easily — no fireman needed! She was safe and only a little troubled.

We quick got out of the way of the pick up line and went about our day, giggling to ourselves.

But, still, I had lost my award all on account of allowing my kid to get so stuck and then for stopping to take a photo in the middle of it.  All for a good story and a few more laughs….

(Ugh! I’m having issues with the photo!!!!)

First Signs

I remember it happening with Elliot…those first signs.

They started suddenly and on their own. Nothing I asked for. And they increased over time, until they just became a way of life. The new norm.

It was welcomed when it happened with Elliot. Surprising, but pleasantly surprising.

Just one day he started helping me with stuff. Stuff that needed to be done. Without being asked. He started stepping up and being a young man helping his mom. Helping his mom take care of his brother and sister. Seeing something that needed doing and just doing it.

And this week, it happened with Zippy for the first time. Yep. I was moving our stuff from one vehicle to the other since my van was going to the shop. I made multiple trips back and forth carrying stuff. And then it happened.

Zippy opened the back of the van and lifted Chloe’s wheelchair out of the back, moving it to the other vehicle for me. Without being asked.

He had seen his mama working hard and realized there was more to be done. And then he took it on himself to do a big job for me. Amazing.

(I won’t mention here the amazing crashing and banging that came from the back of the van as the wheelchair banged in to the back of the van and then crashed onto the driveway and onto his big toe…)

He had seen something that needed to be done, and he did it. Without being asked.

So now it is happening with Zippy, too. He is growing up.

It sure makes a mama proud!

Fight

Chloe and I had our first screaming fight today.

Well, she was screaming. I was watching.

And, ok, it wasn’t the first, but it was the loudest to date.

She’s not feeling well. She had a cold this weekend and stayed home from school today to recover. She sorta went back and forth from feeling good and trying to dance to just feeling crummy and lying down.

Towards the end of the day when we were returning from picking up the boys from school, she was tired. And grumpy. (I’m not talking about her behind her back or saying anything she’s unaware of — she admitted to being grumpy. I mean, who could’ve denied it after the way she acted….)

She had asked me if she could have a turn with my phone. On the way to the boys’ school, I told her she had to wait until we got the boys just in case one of them called me for some reason. I needed to keep my phone.

Well, as sometimes happens, I forgot to let her have her turn with my phone after we got the boys.

So as we pulled in the driveway back home, she quite nastily demanded the use of my phone. I turned around and gave her the look. But the look didn’t have an effect on her. She just screamed again, “Phone! Phone! Phone! Phone! Phone!” signing phone as she swung her head back and forth.

I just watched in amazement, which was not the response she was looking for. So she took it up a notch. She slapped her arms to her sides and let out a holler.

My eyes just got bigger as I watched her from the front seat while the two of us sat in the van in the garage.

You have to understand that this girl went a big chunk of years showing no emotion; and even more years than that feeling the emotion but not knowing how to express it. But this screaming fit I was witnessing was an example of very well-expressed emotion. And it actually thrills me inside. When you have a child who is stuck in their body, unable to express themselves, and then they learn to emerge and express some emotion and communicate their feelings, it is truly amazing to watch.

That’s what was happening.

“Wow!” I said. “Are you being silly or are you grumpy?” I asked her, pretty surprised at her little show.

“No!!!” she screamed.

I asked again, “No, seriously. Are you grumpy?”

She growled and signed grumpy.

I strongly agreed with her that she was, indeed, grumpy and told her she could have a turn with my phone when we got in the house. But the promise of pleasure deferred wasn’t good enough for Little Miss Grumpy. Sitting in her carseat, she slapped her arms, threw her head all about, and screamed in a mocking way all sorts of nasty words, I’m sure. I just stood out of arms’ reach and watched her.

Knowing it usually helps to put words to her emotion, I explained the situation. “Ok! You’ve made your point! You’re frustrated that you had to wait, and I made it worse by talking to you about it, and now you’re really mad. Will you stop already??”

When she assured me that she was done with her fit, I moved in to help her get out of the car. But she wasn’t done with me. Her arms went to flapping, and her words went to flying, and I went to dodging and stifling laughter. She was really in a tizzy.

When I finally thought I was safe from the fit, I succeeded in helping her from the car and back into the house where she got a turn with the phone after a heart-felt apology.

What??!! Giving into her after throwing such a nasty fit?? Really. I mean, seriously, how could anyone turn down her request after that 5-star performance!?

photo credit: www.empoweringparents.com
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