Just Wait and See

A blog about hope, despite the disabilities.

Magic That Might Surprise Even Disney

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You can walk into any of the parks at Walt Disney World and despise the masquerade of it all. Easily. If you happen to suspend your disbelief and allow the magic to sweep you away, though, something better can happen. Fairytales can come true.

In my life, the fairytale I now dream about is called Normal. What would Catherine be like if she were “normal?” What sorts of things would our family do differently? Imagining that for mere glimpses of time is my fairytale. And most of the time, I just suppress it in the reality that she’s not “normal” and our family isn’t “normal” either, and I just go about my day. At Disney, I got two glimpses of Normal, though, and those glimpses of Normal gave me hope at a time when, frankly, my hope has been diminishing.

Let’s be real. Catherine’s wheelchair gets in the way – a lot. It makes hugs feel mechanical and she can’t participate when Sarah sees Brian and me hugging and comes running screaming, “Family hug!” We pick Sarah up and three of us hug while a part of me feels a ginormous hole – always on the side where Catherine should go.  I’m not suggesting Disney gave us a family hug. They did give us all the opportunity to be on the same ride at the same time without a wheelchair when we road Soarin’ at EPCOT, and that was actually a little better for that moment.

I didn’t really know what to expect when we entered the ride. And we took a leap of faith when the cast member told us we’d take Catherine out of her chair and put her in a “theatre seat” on her own. I was a little scared of what would happen on the ride. The last thing I remember before we “took off” was Brian quickly asking a cast member, “How does the ride move?” We learned it only swayed and sighed a sigh of relief.

Then, the lights went down and the screens appeared and we rose such that three levels of seats hung as if we were hang-gliding. While the video played, wind raced across our faces creating the illusion of flying – soarin’ if you will. I looked over at Catherine and saw her smile. She loves the wind. I saw Brian and Sarah too, and I smiled. We were all on a ride doing the same thing and NO WHEELCHAIR!!! Simply miraculous if you ask me.

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Soarin’ at Disney. Look, Catherine even is sitting on her own for a few moments while Brian buckles in for the ride. Look at her wheelchair – in the BACKGROUND!

And then, I smelled evergreen as we “flew” over a California redwood forest. Wow! We all flew through scents and wind and motion that equalized our senses and I felt a little bit Normal. Thanks Disney. Bet you don’t talk about that kind of magic in your ride development meetings.

The second exposure to Normal literally made me cry. We attended a musical performance of The Lion King at Animal Kingdom. Some cast members had told us it was quite honestly the single best show in all of WDW. That’s a pretty impressive accolade, so we decided to give it a try.

I had expected we’d sit in the back because that’s normally where wheelchairs have to go. Instead, they  led us to one of the very front rows and we settled into our seats just moments before the show began. The cast member was right – it’s a production spectacle with extraordinary music and costumes. I was immediately glad we had come. I knew Catherine couldn’t see it. She would feel it and hear it though, and I reasoned that was enough.

Then, after acrobatics and music and costumes that dazzled and lived up to the cast member’s high expectations, I saw a guy in costume talking to Brian and leaning over Catherine. I could quickly decipher, despite the high decibels of music, that the guy wanted to take Catherine somewhere. He’d already recruited Sarah, and Brian was hesitating just long enough. Fortunately, Disney dude won and before we knew it both Catherine and Sarah had joined the music parade that processed around the stage in the middle of the auditorium. I wept. What kid doesn’t dream of being picked when Disney asks for volunteers? What Mom doesn’t sit back in joy watching her kids on a major stage. And my kids – despite the wheelchair and blindness and seizures and allergies and inability to walk or barely even move – BOTH of my kids got to go!

Take a look at the video for it speaks way more than my writing ever can. You’ll also see Sarah in a blue shirt and white floral skirt take off right behind Catherine. And in case you can’t see the video (apologies in advance for the poor quality!), I’ll include a photo as well. Not nearly as good though!

Catherine gets asked to be part of the parade.

Catherine gets asked to be part of the parade.

I still fill up with tears of happiness and joy when I watch it. Maybe you can understand one teeny tiny glimpse into Normal for us and how magical this truly was. It was in this moment that I learned what it means to suspend disbelief, embrace the masquerade and allow myself to be swept away. And my fairytale came true. Many many many thanks, Disney.

Suddenly It Hits Me

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It’s not quite a normal morning. As I reach for the cereal, I see it. I get the flash of Brian, dressed in blue scrubs hanging back in a room where doctors are trying to help our baby girl into the world safely. I’ve had this flash every year, for nine years now. It’s supposed to be a happy day. I promise myself to try to make it so.

 

We hang balloons all over Catherine’s door so she can hear that it’s a special day when she comes out of her room. Sarah and Catherine’s nurse and I sing “Happy  Birthday,” and we take pictures to mark memories. I feel a pit in my stomach, though I smile through it. We line Catherine up beside the clock and count down until exactly 8:25 AM, the moment they pulled 1 lb, 9 oz of baby girl out of my body. Nobody would say she was healthy. How could they? I don’t ever remember  that part. I do remember asking what time she was born over and over again – or was that when Sarah was born?  I definitely remember Brian – standing in the wings as they rolled me into an OR that had been readied for an emergency C-section to save not just Catherine’s life, also mine.

 

I remember being in recovery. I remember a door opening and Brian being on the other side of it. He had the list of people I had asked him to call to deliver the news. Catherine had arrived. Those calls must have been impossible. Rather than joy and excitement, I’m sure they were filled with questions and concern. There is no way Brian could have answered the only real question everyone must have wanted to know – would she be OK? He gave the stats and they were so tiny I can only imagine how shocking the news must have been to family and friends. And then a friend came.

 

I remember her on the other side of a door that opened and closed, too. I remember being so grateful she came. That’s all I remember about that visit.

 

The next memory feels like it must have been hours and hours later. I eventually got rolled in to the NICU to see Catherine. I can barely remember her through the porthole of the isolette. What I really remember is crashing into the doors of the NICU and someone apologizing about it. I think I remember her. It must be a memory because we only have 2 pictures of her actual birthday and what I see it my mind is not one of those pictures. I have hundreds of Sarah. And we only have 2 of Catherine. I am thankful for those two.

 

As I desperately try to remember, at the same time, I want to forget. Writing this brings tears flowing down my face with the intensity of a river being released from a dam. I can’t keep them silent enough, and Sarah comes running to the computer to ask, “What’s wrong, Mommy? Why are you sad?” I tell her they are happy tears. And she reaches up to wipe one away with the back of her little hand. It’s like a movie scene. Just like the scene in my head of Brian.

 

Happy Birthday, Catherine. However you came into the world. I am so glad you are here!

The Question

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“Mommy, how did Catherine get born early?”

Sarah’s little voice pierced the darkness and drifted toward my mind as we drove home in the dark of night. It’s the one I’d wondered about. The one I didn’t know how I’d answer. Most parents may wonder about the “Where did I come from?” question. I’m ready for that one and the whole sex talk to go with it. This one was different. How could I answer this particular question when I didn’t even really know the answer myself?

“Well… She just came early,” I paused. “God just had her come that way.”

It was the best I could do, and I didn’t feel like I did a very good job with it. I drove in silence for a moment, wondering what else I could have said – or could still say. How could I explain the complexities of pre-term labor to a four-year-old? How could I explain spiking a fever and running and infection? How could  I explain placenta abruption and my life and Catherine’s life being in jeopardy? The silence and darkness grew as I began to question whether God actually did do that or allowed it to happen or whether it was just random having nothing to do with God at all.

In a barely audible whisper, I heard her tiny voice from the backseat, and I wasn’t sure I could make out the words.

“What did you say?” I asked her.  I thought I had heard correctly, but I wanted to be sure.

“Mom!” She yelled in exasperation just like I imagine she will when she’s sixteen. “I’m talking to God!”

“OK.” And then I could hear her for sure.

“God, is that true?” she barely uttered aloud.

My faith that has been hiding under a rock poked its little head out to remind me that yes, he was still there.

And I realized I hoped God answered her,  “Yes.”

 

My Pride is Leaking

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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.

My Very Best Moment

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I have been telling the following story to anyone who will listen. I tell it for two reasons. First, I want to remember it forever, and I hope that by telling it over and over again, I will brand it into my brain for eternity. Second, it’s a really great story that I know people will love to hear. But something completely unexpected has arisen in my telling it.

Very few things are sweeter than the kiss of a toddler coupled with a truly adoring, “I love you.” Any parent would likely agree. Sarah did that the other day with a kiss on my cheek. And this time, she decided to add something to it. She told me to close my eyes, and she softly kissed each eyelid one by one. She kissed my right cheek again. She kissed my left. She kissed my forehead and then pulled back, studied me for a short moment  to figure out what else she could kiss, and then moved in to kiss my chin. She kissed my lips. She pulled back once more, looked at my face, giggled, and moved in to get under my chin and kiss my neck. Proud of all she’d uncovered that could be kissed on my face, she sat back nearly triumphantly and smiled. She then moved her hands around and across the space just in front of my face as if to scoop up something from the air and said, “OK Mommy, now wrap them all up and put them in your pocket so you can give them to your friends all day.” I melted.

I told this story to two colleagues later that morning and got the reaction you’d expect. They laughed. They oooh’d. They aaah’d. They agreed that was one of the most priceless toddler tales they’d heard. And I gave them each a kiss from my pocket. It was a good day.

I came home that night and told Brian. I told my Mom on the phone the next time we spoke. I told my best friend. I even told some strangers in the weeks that followed. I kept telling the story with the intention of blazing it into my brain, so I would never ever forget the sweetness and the feeling I had had in that moment. I even wondered what could possibly beat this story. It occurred to me that I might have already experienced my very best moment with Sarah, and I wanted to savor it for all eternity. Then it hit me. What was my very best moment with Catherine? What had happened that I wanted to savor for all eternity? Did we even have one? Or was it still waiting for us?

That stumped me. And my heart sank. I couldn’t think of anything.

What was my very best moment with Catherine? Did I have one? Facing that question made my stomach ache. Surely I must. But nothing came to mind immediately so I beat myself up for not spending enough time with her and not doing enough with her. I kept driving wondering what it might be or when it would happen or if it ever would happen. That was not a good day.

My stomach woke up. I felt excitement. And a picture floated to mind of when Catherine was also a toddler – possibly two or three, I’d have to look it up, and she sat on my legs and did squats. This little girl who never would walk according to the medical community sat astride my thigh and did squats with a perfectly straight back and powerful legs. Over and over and over again.

As soon as I remembered that and felt the excitement, another memory overwhelmed me. She was much younger. I was struggling to figure out how she communicated. A teacher in our home suggested I bounce her on my knee for a bit, stop, wait and see what Catherine did. I followed her guidance exactly, and Catherine arched her back. Over and over again, she arched her back whenever I stopped bouncing her. She wanted more! My little girl who was “unable to communicate,” was talking with me in her own special way.

So now I have two. Which one is our very best moment? The one I want to hold with me for all eternity? I can’t decide.

Wow.

Sisters in a pretty great moment together.

The Peanut Butter Sandwich is Life

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There is something comforting and relaxing about making myself a peanut butter and jelly sandwich in the early stillness of the morning. I’m pushing through an especially tiresome week at work, and being up at 5 AM isn’t something I actually want to do right now. But to make my life work, it’s needed. I’ve found I actually like the time alone, but today, my body said, “Oh come on! Just sleep.” No can do, body. At least I had my peanut butter and jelly sandwich routine.

I make a peanut butter and jelly sandwich  nearly every morning. When Catherine was in the NICU, I needed food I could eat on the go that didn’t require refrigeration – the PBJ! I’ve held to the practice, and folks at work talk about the jelly of the day some days like the weather. I like my PBJ because it tastes pretty good. It is reasonably nutritious – at least better than fast food. And I can easily eat it in a meeting or even walking down the hall at work on days when it’s that crazy (happens a lot, actually). It provides tremendous value in my day.

As I made my sandwich this morning, I realized life is like a peanut butter and jelly sandwich. Some parts are sweet and full of goodness and energy. And some parts are sticky and messy. Personally, if I had to have only one of those, I wouldn’t like my life as much. It’s when I put the bread together, and the sticky, gooey part merges with the sweet, delectable part that I feel like I have a good life. I wouldn’t want only the sweet. Does anyone, really? It’s the sticky part that makes the sweet so refreshing and appreciated.

Ironically, Catherine is deathly allergic to peanut butter. When we learned that, I chose to keep peanut butter in the house and make my sandwich carefully to take to work nearly every morning. Some might consider that irresponsible. If you understood her allergy, you might, actually. But for me, it’s part of the balancing routine that works. Or maybe, unknowingly until today, I kept it in the house so I could keep making the sandwiches and understand in this still moment – the glory of the peanut butter sandwich. Dare I say, the glory of life.

A Little Weekend Reflection

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Sarah knows the word “Dadgummit!” Catherine now knows the smell of burned food – three different kinds to be precise. She knows the smell of burnt candy, burnt toast and burnt toast with gruyere cheese blackened on top. This was our weekend.

I went to the grocery store excited to buy the ingredients to try a new butternut squash soup recipe, chicken piccata, and a candy recipe from O Magazine that was called Honeycomb. Doesn’t that sound wonderful? Brian typically makes every meal for us, and I wanted to give him a treat. Turns out the treat had to wait through several rounds of burn and several exclamations of “Dadgummit!” I knew it was ridiculous when I cut myself, screamed – again – and Brian just said, “I’m sorry” from the other room. He was trying really hard not to rush in and save the meal. I hate when he does that, and he knows it. As I was attempting to get it all together, I reflected on  some comments I’d heard the day prior.

I had had the amazing opportunity to speak at the Themes in Neurorehabilitation: Cerebral Palsy Across the Lifespan conference on Friday at Kennedy Krieger Institute. I spoke to a room of about 100 attendees who gave me a standing ovation at the end. It was dramatic and surprising for me, frankly. The key message of my talk to doctors, therapists, social workers and parents was “Allow us to hope; help us prioritize.” People cried. They told me afterward that I had given them hope. A mom with a 15-year-old daughter told me she didn’t know why she came from North Carolina except that she needed a “shot in the arm.” She told me she’d realized my talk was the reason she came. That’s pretty cool when you hear that your life and your story  affect people so profoundly. But those comments weren’t the ones that surprised me.

What surprised me was the number of people who wanted to know how I did it all. They wanted to know how I balance a life as CEO of an ad agency with being a mom to Catherine. Since my talk had nothing to do with this concept, it really did hit me from out of the blue.

I gave them my best answer at the time, but over the weekend, as I inserted the third batch of gruyere toast  into the oven saying a small prayer that it wouldn’t burn again, I realized I have a different answer. The real answer is that I don’t. I don’t do it all well as evidenced by a batch of burned candy a batch of burned toast and a batch of burned toast with cheese. The fact that Sarah knows the word “Dadgummit!” is proof I don’t do it all well. I may be a successful executive. I may be a pretty OK mom. But I am a lousy cook. And that’s OK with me.

What Makes You Angry?

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Years ago, I was giving a talk about Catherine’s life and how we manage to have hope through it all. At the end of the presentation, someone in the audience asked me, “What makes you angry?”

“I don’t really feel anger,” I replied. “I really don’t. I guess I’m lucky.” I surprised myself with the thought that I couldn’t honestly think of a situation that caused me to feel angry.

I went on to answer some more questions and then interrupted myself mid-answer for some other question I don’t recall now.

“I’m sorry. I want to go back to that question about anger… Seizures. Seizures make me angry.” I had realized I kept thinking about the question while answering the other more mundane ones. And I felt a surge inside me that nearly catapulted the answer forward.

I was somewhat embarrassed at having to go back to the question, but I felt authentic in sharing the reality of my experience, and I was glad for that. Last night, I got angry again.

I can imagine it’s hard to understand how a mom can look at her little girl whose body is out of control and feel anger. I’m not angry at Catherine in those moments. I’m angry at the seizure itself. Ridiculous, right?

But when they happen, they are the only thing in control and there is nothing to be done about it. Sure, we give the medicine we have on hand for such occasions, but that doesn’t work immediately, so we have to wait and watch, as the seizure rules the house.

Last night, I watched the seizure. And I watch our reaction to the seizure. We’re pretty calm. I imagined how someone would react if they saw us. I thought about my perception that they’d wonder how we can just sat calmly – waiting. They’d watch us go about our evening more or less and likely wonder why we weren’t running around in chaos like a TV drama, I assumed. Truthfully, there is a part of me that thinks we should run around in chaos just because that’s what you do see on TV when a medical emergency occurs. But reality is nothing like that.

I helped Sarah get dressed in her jammies. She wanted to play afterward with her medical kit, so I gave her shots in her arm and back and we talked about which ones hurt and which ones didn’t – all while sitting on the floor below the recliner where Brian held Catherine, seizing. Sarah listened to my heart with her stethoscope, and I watched Catherine’s foot twitch uncontrollably while Brian held her and waited for the medicine to work.

Little “Dr. Moore” got an emergency call. “I’m on my way! I have a stethoscope!” she said into the pretend 911 phone. I wished for a split second that someone was on their way with a stethoscope – or anything else that could make the seizure stop faster. I hate them. They make me angry.