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Spontaneity

I keep a bag of toiletries packed so I can travel quickly. I have always told myself it’s so I can head out on business trips at a moment’s notice. Or maybe I would take it somewhere fun without any planning. For awhile in my life that was true. I would come in from a business trip on a Tuesday, for example, and leave to somewhere new on Thursday. No sense packing and re-packing that bag, right?

Truth is that I haven’t actually had to travel that much in the past couple of years. The bag stays packed though. I guess because I am always hoping I will go somewhere quickly – on a moment’s notice – with the spontaneity I had long ago. I never really thought that I keep it packed in case I have to go to the ER. Until today.

Catherine has been having some symptoms that in isolation wouldn’t even make me turn twice. In aggregate they increasingly concerned me. I had been in touch with the pediatrician several times, of course. So today when school was on a delay I thought her doctor might want to see her.

“Uh,” the nurse started after consulting with the doc and calling me back. “This isn’t going to be quite what you expected.” I thought for a quick second, “It never is,” and I stuffed my cynic back in the box. “She wants you to go to the ER at either Hopkins or Maryland.” Ugh. Even when you have a kid with as much complexity as Catherine, I am gonna tell ya – those words rock your soul and the whole world stops spinning for a moment. Then it starts spinning really fast. It’s in that spinning when I realized I would need to pack a bag.

I quickly grabbed stuff and threw it on the floor so I could pack it in a suitcase or something, and then I grabbed the toiletry bag. The irony of the spontaneous trip I ever-hoped would happen hit me as I zipped it closed after tucking my brush inside the bag. My spontaneous trips were to the ER now. Everything else requires significant planning.

OK. I guess I will have to learn to accept that.

But I will leave my toiletry bag packed – just in case.

PS: Catherine came home after several tests and she is just fine! No toiletries even needed on this trip.

When we walked across the bridge into Hopkins the Friday after Thanksgiving, I said, “Who thought THAT was a good idea? They look like Band-Aids!” Everywhere I looked out any glass surface, I had to look through marks on the glass that were beige-ish in color, about 2-3 inches long, horizontal with a slight curve. Just like a Band-Aid.

Over the course of our week at Hopkins, these Band-Aids became more and more of an irritant. Every time I looked out over the city of Baltimore I had to look through – not just some designer’s disruption of the view (which was actually pretty nice from the 12th floor) I had to look through Band-Aids! In a hospital!!

I drive home one night after about 2 hours of non-consecutive sleep on a rant about these Band-Aids. I’m not known for cussing and I called my girlfriend and let out a sailor-worthy string of expletives. All about the Band-Aids. And of course my parallel frustration that we weren’t learning anything new. Sure, Hopkins was as we were their lab rats. I wasn’t.

I had asked people to pray for seizures and they did start to build. And every morning the team would come in and say “We didn’t see any electrical charges that would indicate seizures last night.” I remember thinking in my cynical mean mind that it was because there were too many freakin’ Band-Aids and they couldn’t see through them.

Then one morning I woke up and read a reflection about God and realized He was there. Guiding all of this. And He had led us to Hopkins on several occasions previously, not one of them when I actually wanted to go. I softened. I thanked God. And I walked in faith thought the Band-Aids every time I entered and exited the hospital.

On the morning we discharged, the attending came in and said, “We saw a seizure last night. And because we saw that we were able to figure out what was happening. Rather than spiking the EEG waves, she flattens. And now we have a very clear pattern.” And for the first time I was actually, truly, honestly-in-my-heart grateful for seizures.

So we know a little more. We now walk down the experimental trial-and-error road of anti-seizure medications. Catherine got the electrodes removed and had a spa-like shampoo. And we walked out through all the Band-Aids. This time though – God was in those Band-Aids.

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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.

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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.

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Praying for a Seizure?

Who does that? Who can actually ask God to give their child a big seizure? And yet that’s exactly why Catherine will stay in the EMU until Friday. They are hoping to catch a big one, our doctor told us today. I don’t even know how to write what I’m about to write. If you are reading this, please pray Catherine has major tremors and a big seizure in the next 72 hours. I don’t know if I can pray it so i need y’all to do it for us.

And I’ll pray the doctors and nurses keep her safe when it happens.

Amen

Here’s a look at some of the entertainment over the holiday weekend.

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Weird

It’s weird to be back in the hospital – the H as I affectionately call it. This time we are in for several days to monitor Catherine to see if episodes she has had for years are seizures. And if they are not, what are they? It’s weird though because we checked in without the stress of a life threatening surgery. And we are quarantined in a room 24/7 while they watch Catherine – and us – around the clock to see what’s going on in her brain. I keep thinking its like the medical version of Big Brother.

We arrived yesterday and they immediately put the leads on her scalp to track every single brainwave for days and nights on end. They literally use glue to adhere the electrodes to her head. Glue! Then they wrapped her head in a turban. Had I not known what was going on underneath, I might think she had checked into a spa for a little self time. Ha!

Brian stayed with her overnight last night and I am with her tonight. It’s weird because it’s just life as usual only we are under surveillance – oh and behind a door that air locks! Too much interferes with the EEG equipment so each time a staff person enters or exits we hear a whoooosh as the door opens. Again – weird.

Fortunately they have already seen 3 or 4 episodes. As we settle in for the night I am struck by the odd desire to see her body shake uncontrollably so they will get more data and be able to determine what these shakes and tremors are. Who wishes that for a kid? Tonight, I do. Like I said – weird.

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“I’m so stinkin’ proud of her I just can’t stand it!” I said as I ran over to Brian and hugged him, jumping up and down in front of some colleagues like a five-year-old.

The day prior, Catherine and I stumbled upon Sarah at the low ropes course at Nemacolin Woodlands Resort when we were out for a walk. She did all the elements, including the kids’ zip line, twice. She loved every part of it and begged for more.  She loved it so much that she convinced the Kids Club director to take her to the adult zip line the next morning, and when I picked her up, the director told me she zipped without a moment’s hesitation. That should have been enough. The event that provoked my sheer elation topped even that.

Sunday afternoon, Sarah nearly drove me crazy asking to climb the rock wall. It was quite high, and I wondered if she’d really climb high enough to be worth it. Knowing how much she’d loved the ropes course and zip line earlier, I acquiesced. After begging us throughout lunch, she just harnessed up, buckled on her helmet and then told the belayer, “Climbing” – the tell-tale sign that a climber is taking her feet off the ground, making the belayer responsible for safety. She had no fear.

I felt giddy. Not only did my kid love climbing; she’s good at it. She climbed nearly thirty feet, past the height of the older boy who had gone before her, and then  her hands gave out in the cold. I immediately texted a photo to the only person I know at this stage in my life who climbs. “Look at my kid!” I wrote. I don’t remember feeling so excited in a long time. And in the core of my being, after camping the week prior, I knew beyond a shadow of a doubt at least one thing that makes me unequivocally happy. See if you don’t smile and feel a little tinge of happiness too when looking at these photos.

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A girl after my own heart on the ropes course.

 

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So serious while crossing the tires.

 

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Not even afraid a little bit.

 

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I can do it, Mama! I promise.

 

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Like Mom, like daughter.

 

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Yep, I’m gonna climb that all the way to the top.

 

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Here I go! Gotta love the smiley face hand hold. :)

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Perfect form! She’s even looking down at her feet for the next move. Great job Sarah!

 

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Look at her go.

 

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And go…

 

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Almost to the top when her hands got cold and she rappelled down.
So proud of you, Sarah!

 

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