Just Wait and See

A blog about hope, despite the disabilities.

What is Normal?

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Today, I sit at my computer grateful to get back to my routine of writing blog posts after our recent medical mayhem. It’s ironic that I’m not quite sure what to write about because it’s obvious I should write about Catherine coming home from the H. Several have reached out to ask how she’s doing and I feel nearly guilty that I haven’t publically let folks know she came home and is doing great. I don’t write this blog primarily as a chronicle of her life though. I write it as a source of inspiration (a little therapy for me!) and yes, that inspiration comes most frequently from her life.

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It’s so weird how quickly we move back into our routine and leave out the part where we came home from the H. I oftentimes think that just goes to show how “normal” it is for us to come and go from the H in general. But that’s not normal. And it’s certainly not normal to be in the ICU. And it’s certainly not normal for your kid not to be able to breathe. So why does all this feel normal to me?

I guess it’s because “normal” is all about what you’re used to experiencing routinely. That suggests we can create our own “normal” by upping the frequency of our experiences and making deliberate choices about them. For example, if we want trips to the beach to be in our realm of “normal,” then we choose to go to the beach frequently. If we want a life of adventure to be our “normal” then we need to create that. If we want TV and computer games to be “normal” then we allow it. We can create our “normal” experience to some degree. And “normal” is different for every person and every family.

And then there are things and situations that we’re given that we don’t particularly choose or create that become “normal” for us. I didn’t choose for Catherine to come in and out of the H more frequently than other kids. I do choose my attitude about it. I had a hard time with this most recent H visit because I kept thinking her pneumonia wasn’t a big deal. I kept thinking she’d be fine and we should be home. After all, we have oxygen and nursing at home so we can manage things in our own home rather than having to stay at the H. In fact, the very reason we have those things is to be able to treat her at home because it’s less expensive than a trip to the H. Like most everything else she’s encountered, I was confident she’d pull through it. Then the days turned into a week, I started seeing little to no change in x-rays, and I realized that this hospitalization wasn’t “normal” – not even for her. My confidence faltered.  It ceased feeling “normal.”

“Normal” comes when an experience is routine and we accept it as such. It’s only “not normal” when we fight against it or define it as rare. So, I eventually chose to accept Catherine’s hospitalization rather than fight it and we eventually came home, which isn’t at all rare – it’s happened every time so far (thank God!). And that’s what enables me to think of her hospitalization as “normal” – maybe not normal for most. Thankfully, it is definitely normal for us.

 

How Can You Have More?

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Catherine and Sarah have been taking karate. I know! Crazy, right? Someone replied when they heard that, “Is there anything Catherine doesn’t do?” Ha! What a great question. And terrific irony. This is a story about something different though.

They take karate due to an extraordinary opportunity provided by Casey Cares and Okinawan Karate Dojo. This means the class is comprised of medically needy kids and their siblings. Sometimes, we have kids who just watch because they’re too sick to participate that week. Sometimes, they can’t make it. One has a prosthetic leg. Catherine is the only one in a wheelchair. Most of the kids don’t visibly show their sickliness. Many have cancer.

I’ve gotten to know one of the moms a bit because she has an 8-year-old daughter who became fast friends with Sarah. Her children, and there are five of them, all have an inherited genetic disorder that causes them all to have a lot of medical issues. They get it from her side of the DNA and from what I can tell, it’s a given that they’ll inherit the gene, making it about 100% chance she’ll walk a more difficult road than most moms. I commented to her last night, “You know, it’s pretty cool that you have continued having children even though you know they’re going to have so many medical issues.” I was kind of surprised I said it. Brian frequently tells me he’s surprised what comes out of my mouth and he thinks I don’t think enough before I speak. This surely would have been one of those times!

She replied so openly and with such joy about how we don’t know what we’ll get with any child and immediately pointed out that I had done the same when I had Sarah. True. We wound up talking about how no one knows what will happen when they decide to have children. Even if your kid is born totally “normal” (whatever that means), it’s possible they could become addicted to drugs, or develop cancer or have a baby at the age of 15. No one knows. And so any parent is walking this similar journey in actuality. It’s so nice to think about the many ways my road is “normal”. Believe it or not, it helps with the many, many steps of “ab-normality.” The conversation made me happy.

I woke up today thinking about our conversation and realized that having a child is perhaps one of the greatest lessons in faith that is possible for humans on the earth to experience. And then, if you choose to have another child, it extends that faith into hope. We either hope for something better – or different – or the same. We hope. As this circled around my brain this morning, I found myself repeating in my mind, “Faith, hope and love… and the greatest of these is love.” I realized that no matter how our children come to us, no matter how much faith and hope we have going into it, the reality is that with every addition to our family, love expands.

Sarah Loves the Outdoors

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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!

 

Normal in the Middle

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This blog is about hope despite the disabilities. And today, despite the surgery and the frenetic pace we’ve kept the past couple of weeks, we took a moment for Normal. In and of itself, that provides rays of hope. I was talking with my brother last night telling him all we had to do to get Sarah ready for Kindergarten today. “We’ve gotta get her clothes out and pack her backpack and make sure we have stuff for lunch…”

He interrupted me and said, “You’ve gotta do Normal.” It stopped me in my tracks. That’s exactly right. This morning was Normal. Frantic like every other family in AACo preparing to send their kid off to Kindergarten for the first time. Exciting like every other family. Nervous like every other family. Normal.

The fact that it happened in the middle of major surgery recovery doesn’t matter. It was normal. And I was grateful we’re all home together for it to actually be normal even in our world. I forgot to take my phone to snap a photo on it at drop-off. And I forgot to put Sarah’s watch on her and her new rainbow loom bracelets. She’s gonna be so bummed as soon as she realizes it. And worst of all, I forgot to feed her breakfast! Ugh! But like every Mom having her dose of Normal this morning, I did manage to get a couple of pictures on my “big camera.” Maybe there is hope for me yet!

Have a GREAT day in Kindergarten Sarah! I hope it’s the “BEST DAY EVER!!” I love you.

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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.

Dream Catchers – Catching some dreams for us

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Catherine joined a softball team!

What? How is that possible? Well, take a look at some of these photos and see how cool it is. The best part is the whole family gets to play together – well, when I’m not behind the lens 🙂

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Also, remember that we’ve got only one week left to raise money for Bello Machre in our walk on June 8. If you want to give (half the money you give goes DIRECTLY TO CATHERINE!) – just click on this link below https://bellomachre.ejoinme.org/26526

Thanks all!

Normal

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I’m struck by how recently often I feel normal. And how great it feels. Yesterday, we went to a birthday party for a friend of mine turning, ummmm, 30. Until a couple of months ago, I hadn’t seen her in nearly seven years. We saw each other again because she lives near a park that was built especially for kids with special needs to interact with typical kids, and I wanted to see what it was like. We had a great time,  as if we never missed a day in our friendship, and her little boy and Sarah and Catherine played like old friends.

Yesterday at the party, we knew no one other than her immediate family. I was a little nervous because entering a situation with a wheelchair can be awkward, to say the least. One of my first memories of a similar situation, we were encouraged to “park Catherine over here where she’ll be out of the way.” I almost left that event.

But this could not have been more different. The invitees embraced us – literally. They hugged Catherine. They kissed her on the cheek. They talked with her like she might actually talk back. Sarah played with other kids and tried to learn badminton and soccer on the lawn as she ran around in her Lily dress. A wonderful British man welcomed Sarah into the game of soccer he was playing with 10-year-old and 4-year-old boys. And while I helped Sarah figure out which direction to kick, I looked up to see four women surrounding Brian and Catherine and talking with him, while he laughed. Shortly after that, two of them walked over to me on the lawn and hugged me and kissed my cheek as if we’d known each other for years. This was our first meeting, and I hope it will not be our last.

All of this made me recall a few other recent “normal” events. We went to dinner Friday night for possibly the first time ever as a family of four. We went to Kyoto, a hibachi steakhouse, that both fascinated and scared Sarah with the fire. We wheeled Catherine right up to the table and she sat there just like anyone else would – not at an angle, not pushed off to the side, but just like anyone else.

Normal in a Japanese Steakhouse.

We’re recently back from our first family vacation, where we went to San Antonio, TX. I plan to write about that in its own post, but until then, know that the word that pops into my head as I remember it is, “MAGIC.” We rode rides at Sea World – even Catherine got to ride. We went for ice-cream. We got cranky in the heat. We rode on the boats at the Riverwalk. And we had a great time. Just like a normal family.

So this made me think about what is normal? And why do I feel so especially great when it happens? Sure, sometimes we need special treatment because of Catherine’s situation. For example, my friend who had the party had emailed me in advance about tricky parking at their house. She had already thought through our need to park close and that the van ramp exited from the passenger side, and she figured out a way for us to park easily, even though the many other guests had to park further away. Her patio had steps and several men simply picked up Catherine in her wheelchair and carried her up so she could be with the party and not left with a small group in the yard. They did it again when rain threatened and we had to move inside the house. They just up and did it. So, yes, sometimes we do need special treatment.

But sometimes that special response leads to normal. If it gets us to the place where we can just be part of the way anyone else would do something, it feels like Magic to me. It makes me breathe easier. Literally. And my hope expands. My soul lightens. Relationships deepen. When Catherine’s disability ceases to be a problem in any given scenario, I feel normal. But my sort of normal feels really special.

So, maybe feeling normal is one of our family’s special needs.

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.

I Must Need to Write

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I am exhausted. I can prove that statement by the reaction a colleague gave me at work today. I’d just returned from a pitch in New Jersey, and he took one look at me and said, “You look tired.” He’s right. I am tired. But apparently not tired enough to sleep. So I figure I must need to write. I feel guilty for not being able to write in this blog more – and I miss it. Tonight, I hope writing will be the sleeping aid I need.

Catherine had a really good post-op check up on Monday. In fact, when the Physician Assistant came in, she took one look at Catherine and said, “She’s just three-and-a-half weeks out? She looks great!” That’s never a bad thing to hear. Apparently our efforts at PT and stretching and positioning are paying off, and the surgeon is quite pleased. I am extraordinarily thankful for the surgeon’s approach in not using a spica cast. Catherine’s incisions healed well, we were moving her hips less than 24 hours after surgery, and because we have to  move her hips every time we change a diaper or move her to a new position, she’s remaining flexible rather than atrophying constrained by a cast.

Nearly every friend I have who has had a child go through this surgery has told me how bad it is. Beyond the pain, the “bad” comes from secondary issues related to the cast. Most surgeons cast children post-op from mid-chest to mid-thigh. You can imagine what that means for a kid who wears a diaper. I’d heard stories about trying to keep the diaper area clean – bacteria getting into incisions and creating infection. When our surgeon told us about the studies he’d  done and the fact that he’d not seen any difference in bone healing without a cast and tremendous improvement in secondary issues, Brian and I were convinced. So, now that we’re past Labor Day – the mark I had in my mind for Catherine’s most intensive recovery time – all I can say is that I am extraordinarily grateful for Dr. Freeman Miller and AI duPont Hospital for Children in Wilmington, DE. They were recently ranked #6 in the country by US News and World Report for pediatric orthopedics.

I wrote about how I was nervous Dr. Miller would be hungry during surgery. The morning of surgery, Sarah and I made him a goodie bag with an apple, a banana and a granola bar. Sarah decorated it, and we wrote him a note asking him to take good care of her sister. The next day, we got a note from him for Sarah, handwritten, thanking her for the food and telling her she gave him good energy for the surgery. A handwritten thank-you note from a surgeon to a 2 year old! After that, he ranks # 1 to us.

Despite the good news, Dr. Miller reminded us of the pain Catherine still feels and suggested we not return to 100% normal just yet. I’m no longer sure what 100% normal is. And I’m not sure it matters as long as Catherine continues healing well.

Sick

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Both girls are sick. Ugh! Interesting how it affects me though. Catherine makes me worry. Sarah seems sorta cute about it. I see her runny little nose and have fun trying to wipe it clean while she squirms away. Catherine requires the bulb syringe to make sure she can breathe. Literally. It’s scarier, frankly.

And we had to cancel two medical appointments this week for Catherine because of it. That’s just irritating, because now I have to rearrange work around an additional set of appointments during another week. But I know it was the right thing to do. No one wants to put a kid under general anesthesia if she is sick.

So, I wait and hope for this “sick” to run it’s course. And I’m aware that I grow a bit worried at the sound of Sarah’s cough tonight. So maybe sick is just sick and it’s not that different for each of them after all.