Doubt Archives - Just Wait and See

Why Celebrations Matter

March 5, 2016 by Ellen Moore Leave a Comment

My brother inspired me to pay more attention to celebrations. He said, “You should keep a bottle of champagne in the fridge at all times, so you can celebrate at a moment’s notice.” That’s great advice. And I do have champagne always on hand. Champagne wasn’t the right mode of celebration this time, though. I wasn’t really sure what was.

Catherine was selected as Student of the Month in February at her school, Cedar Lane. Oftentimes, if I’m honest with you, I wonder if these little things are just to help parents feel “normal” in a world of abnormality. This was different though. The certificate even said so: For your continued independence in PE. Wow! That was real! I had seen the videos. She really was doing more and more in PE. Frankly, she’s a little athlete and quite competitive.

I was thrilled. I gave her a big hug. I couldn’t be more proud of her and I told Sarah when she came home from school. “Guess what? Catherine got Student of the Month!” We decided we needed to celebrate. But how? Champagne wouldn’t have been right for Sarah either and it certainly didn’t fit for Catherine and this situation. We wanted to do something special for sure.

The thing that kept coming to mind was to go to Chick Fil-A. What kid doesn’t love a trip to CFA? Well, maybe Catherine. The reality was that I was having a hard time thinking of something that would be fun for her and could be spontaneous (aka: relatively easy!) for me. Ultimately, I decided it was about the celebration more than the activity of the celebration. So that was it. Chick Fil-A, here we come!

Sarah put Catherine’s medal on her and we loaded up in the van (Brian was at class) and off we went. When we walked in, I told Catherine the smells were in celebration of her. We told the woman at the counter that we were celebrating. She gave us a great big “Good job!” and we sat down at our table. Truth be told, it was a relatively calm, quiet celebration. Catherine even started dozing a little because we were past her bedtime by the time we got out of the house. I wondered if it was all worth it – getting her bundled to go out in the cold. Fighting the doors in and out of the house, the van, the restaurant. Trying to keep her awake. Trying to think of things to talk about with her to make it feel like we were celebrating. The reality is that I will probably never know if it mattered to Catherine. I think that’s OK. It mattered to Sarah and me. Congratulations Catherine! We are so proud of you.

Prayers Are Working – I Guess

December 4, 2013 by Ellen Moore Leave a Comment

Looks like the prayers are working – ugh. Catherine had a bigger “tremor” last night and they told Brian today that it looked like a seizure. They told him we would probably start a new medication tomorrow. Just now, she had a 25-minute “tremor” and it was so hard to watch! Usually we hold her so I don’t usually see her little face. I’ve only ever heard about people saying “their eyes rolled back in their head” and tonight I saw it. It was my little girl.

As I watched – significantly aware there were people in a control room watching her and me, I remembered back to a presentation I made at Christ Church in Charlotte. It was the same presentation I made to my home church in Severna Park. In Charlotte someone asked me “What makes you angry?” I replied quickly that I didn’t really feel anger. I went on to take the next question and stopped mid-answer and said out of the blue – “Seizures. Seizures make me angry.” They did again tonight. I hate them and they scare me and I wonder what is happening in her experience of it. Does it hurt? Does she want to be held? Can she hear me? And feel me holding her hand? Is anything I do making any of it any better?

Maybe someone here can answer those questions for me. For now, she sleeps like she hasn’t a worry in the world.

That’s right, Catherine. Give Mommy all those worries and you sleep in peace, little bug. I love you.

Prayers Are Working – I Guess

December 4, 2013 by Ellen Moore Leave a Comment

Maybe someone here can answer those questions for me. For now, she sleeps like she hasn’t a worry in the world.

That’s right, Catherine. Give Mommy all those worries and you sleep in peace, little bug. I love you.

A Little Bummed

August 23, 2013 by Ellen Moore Leave a Comment

They just decided to start Catherine on a little Epi to try to get her BP to come back into a good range. Fluids haven’t been working enough and it bums me out a little. Her BP has been high 60s over midish 40’s so I understand though it’s still a little disappointing. They haven’t actually started the Epi. The nurse has it ready though watching for the orders. Maybe they won’t???

She’s also not even trying to breathe over the vent yet. I tend to think she’s regrouping after such shock to her body. Will hope for breathing tomorrow.

And now we know what to pray for tonight. In all things pray with thanksgiving.

Quick Update Before Bed

August 19, 2013 by Ellen Moore Leave a Comment

Catherine has had a relatively uneventful day which you would think would be good. It’s been frustrating though because I was really hoping to be able to tell you they pulled the tube.

She breathed on her own with the tube still in place for three hours last night. Today I was getting really excited as she was coming up on an hour. Then at 54 minutes she didn’t take a breath and the ventilator kicked in to breathe for her. It’s not like it gives a little puff and she’s off in her own again. It just takes over and she has to start from scratch the next time they are willing to try. Usually they want to let her rest and it can be hours before they’ll try again. Like I said – frustrating.

The good news is that she is off the blood pressure med entirely and holding her BP up really well. She’s also off all pain med except Tylenol. We are trying to balance narcotics for pain and being awake to breathe. Tricky to say the least. She seems to be doing well on only Tylenol and I am amazed frankly.

So she’s on no meds – just needs to get off the vent. At some point they’ll decide just to leave her on til surgery. So far it still seems to be planned for Wed. I am sure we will get more info when Dr. Miller rounds tomorrow. Sundays are pretty quiet in the H typically. I remember that from bed rest with Sarah. They were among the hardest to get through then. Today it is sorta nice.

Hope everyone sleeps well. Pray for good breaths. Sure would like to see my little girl without the tube coming out of her mouth!

Sweet dreams y’all –
Ellen

My Pride is Leaking

July 27, 2012 by Ellen Moore 2 Comments

Brian and Catherine had three medical appointments this week. I’m picking up the pieces from a really intense new-biz week and the flu last week at work. And Sarah started a new school. In comparison to last, this week has seemed relaxing though.

One of the appointments Brian and Catherine had was to see our neurologist at Kennedy Krieger. Catherine’s been having more seizures and he finally suggested medication on top of the ketogenic diet. Catherine’s had 10 big seizures that required Diastat this year so far. Last year, her most ever, she had 13. So, at this pace, we’re poised to blow past that number by a lot. To medicate or not medicate? That is the question.

I hate the thought of Catherine on seizure medication. This is going to sound weird – and my apologies to any parent who has a child on seizure medication – but I have a confession to make. It’s a bizarre source of pride for me that she’s not on seizure medication. I don’t even know the analogue to that in the normal world. Maybe it’s being proud of your daughter for not being pregnant in high school? I just know whenever the docs and nurses do an intake and we tell them she has seizures this is how the conversation goes:

What medication does she take for the seizures?

Diastat for her big ones.

Uh-huh. And what else?

Nothing.

They usually look up from a clipboard or a computer screen at this point. Nothing?

That’s right. She’s on the ketogenic diet and we don’t give her regular seizure medications.

And that’s when the little tiny feeling of pride leaks out of me. Weird, huh?

So, now, Brian and I are supposed to be deciding whether to put Catherine on Kepra or not. And that’s bizarre, too. It wasn’t that long ago in medicine that doctors simply prescribed and the patient (or the patient’s parents) just did it. Not much “thinking” to be done. Now, everything is a decision in partnership. And that makes it harder on us.

I just watched a TED talk about this very dilemma while I was sick. Baba Shiv, the speaker in this video, studies how we make the choices we do. He speaks about the energy it takes to heal a body (it was cancer in this TED talk video) and how that can be disrupted with the energy it takes to decide aspects of your treatment. Studies have shown that too many choices make us less happy and Shiv posits that this can be true in medical choices as well. Watching this video, and using it as a foundation, one might argue we should just put her on the Kepra.

I sit for a moment with that thought, and I still can’t bear it.

I guess my pride is leaking more than I realized.

Pack it?

August 4, 2011 by Ellen Moore Leave a Comment

I still remember an art project in 7th grade. I don’t have the art project; it has to live in my memory. It was my very favorite piece of all my school projects and my teacher blew it up in the kiln. Gone. Overnight, all my hard work and pride blew apart into little pieces that now hang in my memory as what the piece actually was. It was an abstract sculpture of my initials, but the fact that it’s gone makes it live in grandeur in my head. It probably wasn’t really that great.

Today, it’s exactly one year since Catherine’s surgery and I find myself thinking about that art project. The surgery anniversary really has nothing to do with the art project, but I realized the date and sometimes things like that make Catherine’s world more real to me. So much is happening in our lives right now, that it’s nearly impossible to think back to that day of surgery. But I do. And in nearly the same moment, I think ahead to a move we’re getting ready to make. We’re finally moving from the 850 square foot house that’s enclosed our little family for ten years into a big, spacious 3000 square foot open floorplan that will immediately enable us to exhale. But first, we have to pack.

I glanced around the kitchen this morning and caught a bottle filled with colored sand on the stove. You remember the type. The bands of color fill the bottle – red, yellow, white, blue, purple, green, orange – over and over. A label on the bottle says, “Catherine, Summer, 2011.” And I thought for a second, “Well, I can trash that so we don’t have to move it.” And in nearly the same thought, I recalled my 7th grade project.

What if this is Catherine’s sculpture? What if she had the best time making it and she remembers the feeling of the gritty sand? Maybe they put fragrance in the color and she thinks about that. Maybe this is something meaningful to her. I paused for a moment because I don’t know. And I don’t know if or when I’ll ever know whether anything is meaningful to her or not.

So, do I pack it? Or throw it in the trash?

I Wish I Knew

October 25, 2010 by Ellen Moore Leave a Comment

The most common question I get from people who know Catherine right now is, “How’s she doing? Is she over the pain?” I wish I knew. Most times, she seems comfortable, but frankly, she seemed comfortable even just after surgery. Of course, that was due to drugs. So now when she’s sitting quietly in her chair, we assume she must be comfortable. But I don’t really know.

This past weekend, we were at the park. I looked up and saw her crying. Catherine doesn’t cry often, so when she does I immediately pay attention. In fact, she doesn’t actually cry. She makes what Brian and I call “the crying face.” She opens her mouth yet sound doesn’t come out. She squinches her eyes and her face turns red – just like a kid having a major meltdown. But there is no thrashing and screaming from Catherine. She just makes the crying face.

I took her out of her chair and sat her on my lap. The crying face disappeared immediately. Was she in pain? Possibly. Did she just want Mommy? Also possible. Was she just tired of being in the same position? One would certainly think it would get old to sit in a wheelchair for a long time. But the reality is that we don’t actually know for sure.

We’re not giving her any more meds for pain. She gets occasional Tylenol because she’s technically in “some discomfort” until she turns 7 in February. So, when you ask me how she’s doing, I’ll tell you fine. But the God’s honest truth is that I wish I knew.

Waiting to get Catherine's hand painted at a fall festival. Sarah got her eye painted.

The Observer

January 20, 2010 by Ellen Moore Leave a Comment

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?

Allergies waiting

July 25, 2009 by Ellen Moore Leave a Comment

Once again, we’ll wait and see…

Catherine had a severe respiratory attack on July 5 after going out for a bit of ice-cream to close the holiday weekend. We wound up riding via ambulance to the ER. Happy Independence, huh? Suspecting the ice-cream we let her taste, we asked her pediatrician to run an allergy panel. Did you know you can do that in a blood test now?

A Friday later, Brian called me at work. He always starts his calls the same, “You in a meeting?” I guess he’s learned I usually am.

“Yeah, just finished though, what’s up?” I asked thinking about the next thing I needed to do.

“We got Catherine’s allergy report back.”

“Yeah? What’s it say?”

“You got something to write with?”

Brian proceeded to read a list of NINE foods that showed up as allergens. Trouble is, one of them was milk. Trouble with that is that the formula for the ketogenic diet she’s on to keep her seizures under control is based in, you guessed it – milk!

I had a bit of a freak-out. If I look back and observe my behavior after that call, it was a bit ridiculous. I wandered from person to person at the office telling them this news. What was I seeking? Some understanding. The problem though was that try as they might – and they did – there was no real way for them to understand all the concerning implications running through my mind. I needed to talk to a friend who had a kid like Catherine.

The special needs world calls kids without special needs “typical.” Sometimes the parents of typical kids understand my laments. But sometimes, I need a mom of a kid with special needs. This was one of those times. It’s not that my colleagues didn’t get it. I think they actually did. But it was my lack of feeling understood. The lack of relation that made me not feel in my bones that they felt my fear in theirs. What’s that about? It’s certainly not fair to my typical parent friends. And, frankly, it puts a lot of pressure on my special need parent friends. I’ll have to keep thinking about that some.

The good news is that we just met with Catherine’s allergist this week, and he sees no reason to take her off her KetoCal, the formula designed to control her seizures by keeping sugar and carbs away. I actually couldn’t believe a med school degree was required for this when he said, “The way we diagnose an allergy is to have a clinical reaction to a food and a blood level response. She’s not had a reaction to milk for years, so even though her blood level indicates she might, we would not call this an allergy.” That’s so flipping obvious that it made me laugh at myself for that ridiculous day I ran around trying to find someone to understand. Had I just been still for a moment, I’m sure I would have understood in my very own typical mom and special needs mom brain.

So, we wait to see about the other 8 allergens. We’ll think of Catherine as allergic to peanut, egg and soybeans. But mostly, we’ll just wait and see.

Waiting,

Ellen