Just Wait and See

A blog about hope, despite the disabilities.

Special Needs of the "Normal" Sibling

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It happened again. Another seizure that required meds. But this one had a twist: Sarah wanted to be put to bed in the middle of it by Brian – and Brian was holding Catherine.

“Daddy put you to bed,” she whimpered at the door. That’s how she tells us who she wants to put her in bed. She confuses her pronouns, and it’s kind of cute – unless Daddy’s not available – and then it’s a relentless whine.

Ironically, I’d just had a conversation with a potential client and we discovered that each of us was walking this “parent of a kid with disabilities path.” He is way ahead of me on it as his son just turned 21. But he had told me the story of their daughter who is three years younger and had a hard time with her brother’s disability when she was about nine years old. Initially, she hadn’t. But as she matured, she became angry. She finally turned the corner when she got to go to a psychologist and realized, “You mean this is my very own doctor?” Seemed she had some “special needs” too.

That conversation played in my head as I knelt down to Sarah’s level. “Hey Sarah? You know how sometimes when you’re sick, you want Daddy to hold you?”

“Yes,” she nearly whispered.

“Well, Cackie’s sick, and she wants Daddy to hold her. And I want to hold you and put you to bed and tuck you in really special. Can I do that?”

“OK,” she accepted, and willingly let me put her down for the night. I said a quick “thank you” in my mind to my new friend for helping me remember that Sarah has special needs, too. Privately, if I really confess my deepest thoughts, I think I hoped this one conversation would spare us any anger when Sarah is about nine. Crazy, huh?

But then Sarah got up and came to the door again. “Daddy put you to bed!” she whined a little louder.

After asking me to videotape Catherine since we’ve not taped the seizures that require meds in a long time, Brian got up from his chair and began carrying Catherine to her room.  “What are you doing?” I asked in confusion.

“I’m going to put Sarah to bed,” he said.

And I stood with the video camera, watching Catherine seize, amazed at my husband who calmly figured out how to balance all the special needs of both our girls last night.

Are We Out of the Woods?

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We passed three weeks post-op on Wednesday, and on Monday, we go see the surgeon to see how Catherine is doing. She’s doing so well on the outside, it makes me wonder if the proverbial ‘other shoe’ is about to drop on the inside. Is the hardware still in place? Are her bones healing well? Have we done a good enough job keeping her knees and toes always pointing at the ceiling? I sure hope so.

Lately, she’s been expressing more pain by whimpering and, at times, yelling in her own way. I interpret this as a good thing – not that she’s in pain, of course – but that she’s letting us know. I think she’s moving more and sick of being mostly on her back. When she moves, I know it hurts a ton! I also think that since we’re weaning her somewhat from her meds, she’s more alert and more aware of the pain. That’s a double-edged sword, of course, but overall, I think the signs of pain are, relatively speaking, good.

Tonight we went on a walk. It’s 73 degrees according to my “always on” weather station. Sarah rode in a stroller (which she rarely does) and Catherine rode with her legs extended, knees and toes to the sky, and we strolled through our neighborhood. Brian and I talked about the day, and we reflected on a house we could have bought for about $140K years ago. Brian told me about Sarah playing in water and watering the plants. I told him about hitting off the first tee in over seven years. I hit it straight and long and was quite relieved! And I realized something during our walk…

Life is good. May it stay so for awhile.

The Observer

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Am I “The Observer?”

Catherine has what’s known as “stridor.” Basically, it’s a sound that comes from inflammation in her throat obstructing her airway just enough to produce a sound when she breathes. Sort of like an old man on oxygen – or at least what I hear in my mind when envision an old man on oxygen. Our ENT said, “It sounds much worse than it actually is,” so we just try to deal with it as part of our experience of normal. Sometimes, it gets much worse though – like this morning.

I had asthma as a kid. I remember struggling to breathe and frankly, it was scary. My mom used to put me in the bathroom with the shower running so it got all steamy. She sat with me and had me drink tons of water to open up my lungs, so I could breathe. I guess it was a homemade version of an inhaler, and it worked. I’m really thankful she did that. Though stridor is not at all asthma, every time Catherine has a bad episode, I flashback to the bathroom, and I feel scared. Not so much scared for Catherine, for I pretty much understand what’s happening, but I literally feel the same fear I did as a kid. I wonder if Catherine feels that feeling. It sucks.

This morning Catherine had a bad episode that caused her chest also to retract. Retracting means her chest collapses as she struggles to breathe. That’s not stridor. It’s just her little body working extra hard to take in the O2’s we all need to live. When she retracts and you can hear the stridor, it literally makes my skin crawl and I want to run away.

A nurse was here this morning, so she helped Catherine get through it. Catherine also had a deep, productive, messy sounding cough (“Should she go to school?” I quickly wondered), and the nurse decided she needed chest PT, which Brian refers to as “beating.” It’s not, of course, but someone might think it is if they watched what happens. The nurse cupped her hand and hit Catherine’s chest repeatedly to try to break up whatever in her lungs was making her cough. It’s used for people whose muscles aren’t strong enough or controlled enough to help them cough really hard.

I sat outside Catherine’s room, unable to do anything, watching her and the nurse on our video monitor. Suddenly I had a thought: Would an author writing a book describe me as the “cold, uncaring Observer”? Is that how Jodi Picoult would describe me so all her readers could see me in their minds?

Am I that mom?