Just Wait and See

A blog about hope, despite the disabilities.

Why Celebrations Matter

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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.

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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.

How to Achieve Your Goals in One Simple Step

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Now that I’ve put it out there, I feel an obligation to write. I said I’d be writing more to anyone reading this and so I feel like I must make that happen. Just because I said I it was a goal of mine.

I’ve heard it said that you share your “do more” goals with friends and keep the “give up” goals to yourself. Or is it the other way around? I sort of think that regardless of the type of goals, we need to share them with someone if we really want to make them happen. For example, we have a goal-setting dinner as a family on New Year’s day. It’s part of our tradition with collards and black-eyed peas and driving to the beach to have a picnic in the freezing cold where we can feel the energy of a fresh start to the year. We each think about what we want to make happen for the year. We write it on a piece of paper and tuck it into these glittery boxes that make the ritual seem extra special. Even Catherine sets some goals.

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Usually, we keep the goals private. I’ve never pushed that point with the family as I respect each person’s privacy with their own goals and wishes and dreams. I even wish there were a way Catherine could write goals on her own so she could keep them private if she wants. A couple of times a year, we pull out the boxes at dinner and each look at what we wrote in order to make sure we’re on track to hit them by the end of the year. Sometimes they get discussed. Many times, the goals remain special and private.

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This year, we had set a goal to travel internationally, so we made that happen. We had shared that goal with each other and knew it was in our goal boxes. When I left my prior employer and had no income, Brian and I discussed whether to cancel the trip. Knowing it was a goal in our boxes, I thought about it a little differently. There was already an expectation we would make it happen within the family – and so we did. And wow am I so grateful we did!

I am coming to believe that it really is more powerful to share your goals with someone – all of them. People want to help when they hear them. People want to encourage you – hold you accountable – help you make it – all because it seems it’s human nature to want to see people do what they say they want to do. And sharing the goal seems to set an expectation in the mind that it will happen. I wonder if neuroscience can prove that yet?

I think this time, in January, we may do it differently and share our goals with each other. Because a goal shared is much more likely to find its way to accomplishment. Take a risk today. Share one of your goals with someone and see what happens. If it’s too scary to tell your spouse or best friend, then tell a stranger waiting in the grocery line while you’re chatting. Sometimes it’s easier to share the big stuff with someone who isn’t so intimate.

I find that the act of sharing my goals – as wild and “impossible” as some of them are – starts to build hope. And hope builds action. And action brings results. And that gets us past our own disabilities.

Tired. Late. Stable.

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Hi everyone.

Thanks so much for your prayers and support. Today was long and hard. Imagine sitting in the waiting room for what you expect to be about 5-6 hours. We’d brought stuff to do – computers, games, magazines, books. I even thought perhaps I’d edit a video. It takes a little while to settle down from all the anticipation and stress of getting ready for the big  day. Kissing your daughter good-bye for surgery is never easy. Trust me. And settling down after all that adrenaline takes a little time.

So the first visit from the OR nurse an hour after we’d said our good-byes was pretty easy. They’d put in several IV lines and things were going well. The next visit – or maybe I’m already confused – she told us he started the incision at 9:28 and we could expect about four hours from then to be done. We quickly calculated 1:30 and she said to give it til 2 PM. OK. We were settling in for the day.

That relaxation didn’t last for long. On her next report, she told us Catherine’s blood pressure had dropped. “He’s just sitting there waiting on anesthesia to give him the go-ahead to proceed,” she said. She literally put her hands under her chin like a kid might wait for a bus. I don’t think it was 10 minutes later that she came back and said, “He’s closing.” She said it so casually. Like the operation was complete and it was time to go home.

“What do you mean, ‘closing’,” I asked. She explained that he didn’t think it was safe to proceed and he was closing her up and would be out to talk to us. Somewhere in all that she did say that he’d opened her up to the bone, so I immediately had a picture of my little girl with a back-length incision for nothing. Her spine was still crooked and she had a great big cut running the length of it. What a waste.

I couldn’t handle it. I walked away and quickly realized I didn’t know where to go. I was looking for a place to cry.

Eventually, Dr. Miller came out after closing her up. He said she looked good and was doing fine. Her blood pressure was back up after some meds. As he closed, he said, he wondered if he could have finished the procedure. At the same time, he was comfortable with his decision, as was I.

The real reason he closed was that they couldn’t figure out why her blood pressure dropped. It went to 60’s over 40’s and they like it to be something closer to 100’s over 80’s. They thought it was due to fluid loss so they gave her more blood. She got 2 units in the short time she was under and that didn’t really help. They gave her Epipenephrin (sp?) which got her pressure back up, but because the team couldn’t figure out why it dropped in the first place, he didn’t know how to treat it, so he decided with the bigger part of the surgery to go, he’d close her up and wait.

So, now she has a back-length incision. She’s on a bunch of meds for pain and blood pressure. And we wait.

He had cut through the skin, the muscle, fascia and connective tissue and exposed the full length of her spine. He’d drilled two holes into her pelvis. It seems fortuitous looking back on it that she dropped before he started to put the metal rod into her body. He told us this was the ideal place to have it happen, for had it happened when the rod was in and some of the wires attached, he’d not been able to close and that would have created a different set of problems. So, despite the agony and tears, I found gratitude. In all things, thanksgiving, right? To be honest, this time it was hard.

There are three lines of possibility for the drop:

1. Reaction to a med. She was on a cocktail for anesthesia and pain and any one of them could be the culprit.

2. She had a big seizure.

3. She had a reaction to a blood product. Could be platelets or Immunoglobulin(sp?) or blood itself.

They’re running all kinds of tests. We’ve had a lung x-ray, and EEG, visits from allergists and the nutritionist – in addition to the regular docs and nurses all trying to care for her. Anesthesia came in three times and read the five inches of Catherine’s medical book looking for any clues to help decipher the cause of the drop. She’s simply amazing.

And like much of Catherine’s life – and really all of life, I suppose – we’ll just have to wait and see.

In the meantime, she’s had some breakthrough pain which they’re managing quickly and well. She’s ventilated and on meds to keep her blood pressure up. They plan to try to wean her from those overnight. She lies a bit on her side right now and I got a peak at the top of her incision bandage. Maybe it wasn’t for waste. Maybe we needed this to happen for some reason. Dr. Miller thinks the remaining 2/3rds will be easier on her system because she won’t have to absorb all of it in one experience. Time will tell.

And as for timing – he’s hoping to continue chapter two of the surgery on Wednesday. We’ll just wait and see.

Live Like You're Dying – In a Couple of Weeks

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C Smile

This is Catherine smiling 🙂

I’ve been thinking about death a lot lately.  Most people don’t think about it – or rather what I mean is they don’t have to think about it. I’ve had to think about it since the day Catherine was born. I especially remember thinking about it in the context of whether I would have to make a horrifying decision to allow her to die. God’s grace spared me that actual decision though I did ponder it in the stillness of long, lonely nights spent waiting.

Years ago, we had a transitional priest at my church while we were waiting for a new priest to be called. He was great. Full of energy. Really inspirational. And I found myself wanting to hear what he had to say rather than just sitting through it (come on, we all do that at times!). He led a Sunday School session where we studied the funeral service of the Episcopal Church in the Book of Common Prayer. I remember wondering if I was put in that class because I was going to have to plan a funeral service soon. I nearly quit going because of that thought figuring if I didn’t attend, maybe no one close to me would die. The obvious fear was Catherine. Though I let it extend to others in my life in my absurd worrying.

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Book of Common Prayer

 

Thankfully, no one died. And I didn’t quit. I stuck with it and eventually encountered a challenging part of the service. While earth is cast upon the coffin (it’s actually written that way, you can look it up on p 485, 501 BCP), the Celebrant says, “In sure and certain hope of the resurrection to eternal life through our Lord Jesus Christ, we commend to the Almighty God, our brother N; and we commit his body to the gound; earth to earth, ashes to ashes, dust to dust.”

What? What is certain hope? That is a definite oxymoron. And what’s up with hope for resurrection to eternal life anyway? I thought part of the deal was that as Christians, we believe it is going to happen. If someone dies, and he or she believes the Gospel, then that person would have eternal life. So, I asked about that and encountered a discussion I barely remember. It kept nagging at me though, so I did a little research, and  I definitely remember the following Sunday.

Walking into church that next Sunday after struggling with my question during the week and not being satisfied, I saw the priest stereotypically on the front steps of the church. I shared a bit of my research and he asked me to share it with the Sunday School class in a couple of weeks. I accepted that invitation on faith, hoping I’d find something to say.  It resulted in a pretty powerful presentation that I went on to share with a crowd at my home church in NC as well. And I concluded that hope is emotional, belief is mental and faith is active – faith enables our actions.

Now, I’m thinking about death again in the face of Catherine’s surgery. Some of that is around logistics such as where do I want Sarah if it happens and how will we tell her. Most of the thinking though is about what I want to do with Catherine over the next two weeks before she goes in for surgery.

I just had a chat with someone about what happens when you face near-death and whether the changes everyone swears they’ll make are actually sustained. Many people post quotes on places like my Pinterest board that encourage readers to live life like they were dying. I’ve actually thought about that a lot. “What would I do if I were going to die tomorrow?” kind of thing. The reality is that you can’t live life that way – at least not all of it.  Because, let’s be honest. If any of you reading this blog knew you were going to die tomorrow, you probably wouldn’t take time to read this blog. Don’t worry – I’m not offended. I might make a final blog entry, but I certainly wouldn’t run around reading others people’s blogs. And I’d not pay the bills, nor do any laundry. And I’d not go to work. And if I lived every day “like I were dying” my life would collapse because I do have to go to work, and I do have to pay bills. (Regardless of what’s happening in life or death – laundry, however, can wait!)

So, these two weeks prior to surgery are an amazing gift. They are a wonderful window of time where it’s short enough that I can actually do some special things that I’ll want to make sure I did if Catherine does die. And it’s long enough that I can continue paying bills and going to work and doing all the stuff we have to do in reality. I can take care of the responsibilities AND treasure the moments with Catherine. And I think that’s really how we’re supposed to live life. Not as if this were our last day. Rather as if we might lose everything in the next couple of weeks or so. We need to continue to meet our responsibilities, AND we need to make sure we both create and treasure special moments.

These next two weeks, I want to live life as if these are her last few weeks. We’ll hope that they won’t be for sure! And I’ll act on faith that they won’t be as well. However it turns out, I will know I had no regrets. And after all of this deep thinking for a summer Saturday, this weekend, I’m taking her swimming.

Live Like You’re Dying – In a Couple of Weeks

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C Smile

This is Catherine smiling 🙂

I’ve been thinking about death a lot lately.  Most people don’t think about it – or rather what I mean is they don’t have to think about it. I’ve had to think about it since the day Catherine was born. I especially remember thinking about it in the context of whether I would have to make a horrifying decision to allow her to die. God’s grace spared me that actual decision though I did ponder it in the stillness of long, lonely nights spent waiting.

Years ago, we had a transitional priest at my church while we were waiting for a new priest to be called. He was great. Full of energy. Really inspirational. And I found myself wanting to hear what he had to say rather than just sitting through it (come on, we all do that at times!). He led a Sunday School session where we studied the funeral service of the Episcopal Church in the Book of Common Prayer. I remember wondering if I was put in that class because I was going to have to plan a funeral service soon. I nearly quit going because of that thought figuring if I didn’t attend, maybe no one close to me would die. The obvious fear was Catherine. Though I let it extend to others in my life in my absurd worrying.

BCP

Book of Common Prayer

 

Thankfully, no one died. And I didn’t quit. I stuck with it and eventually encountered a challenging part of the service. While earth is cast upon the coffin (it’s actually written that way, you can look it up on p 485, 501 BCP), the Celebrant says, “In sure and certain hope of the resurrection to eternal life through our Lord Jesus Christ, we commend to the Almighty God, our brother N; and we commit his body to the gound; earth to earth, ashes to ashes, dust to dust.”

What? What is certain hope? That is a definite oxymoron. And what’s up with hope for resurrection to eternal life anyway? I thought part of the deal was that as Christians, we believe it is going to happen. If someone dies, and he or she believes the Gospel, then that person would have eternal life. So, I asked about that and encountered a discussion I barely remember. It kept nagging at me though, so I did a little research, and  I definitely remember the following Sunday.

Walking into church that next Sunday after struggling with my question during the week and not being satisfied, I saw the priest stereotypically on the front steps of the church. I shared a bit of my research and he asked me to share it with the Sunday School class in a couple of weeks. I accepted that invitation on faith, hoping I’d find something to say.  It resulted in a pretty powerful presentation that I went on to share with a crowd at my home church in NC as well. And I concluded that hope is emotional, belief is mental and faith is active – faith enables our actions.

Now, I’m thinking about death again in the face of Catherine’s surgery. Some of that is around logistics such as where do I want Sarah if it happens and how will we tell her. Most of the thinking though is about what I want to do with Catherine over the next two weeks before she goes in for surgery.

I just had a chat with someone about what happens when you face near-death and whether the changes everyone swears they’ll make are actually sustained. Many people post quotes on places like my Pinterest board that encourage readers to live life like they were dying. I’ve actually thought about that a lot. “What would I do if I were going to die tomorrow?” kind of thing. The reality is that you can’t live life that way – at least not all of it.  Because, let’s be honest. If any of you reading this blog knew you were going to die tomorrow, you probably wouldn’t take time to read this blog. Don’t worry – I’m not offended. I might make a final blog entry, but I certainly wouldn’t run around reading others people’s blogs. And I’d not pay the bills, nor do any laundry. And I’d not go to work. And if I lived every day “like I were dying” my life would collapse because I do have to go to work, and I do have to pay bills. (Regardless of what’s happening in life or death – laundry, however, can wait!)

So, these two weeks prior to surgery are an amazing gift. They are a wonderful window of time where it’s short enough that I can actually do some special things that I’ll want to make sure I did if Catherine does die. And it’s long enough that I can continue paying bills and going to work and doing all the stuff we have to do in reality. I can take care of the responsibilities AND treasure the moments with Catherine. And I think that’s really how we’re supposed to live life. Not as if this were our last day. Rather as if we might lose everything in the next couple of weeks or so. We need to continue to meet our responsibilities, AND we need to make sure we both create and treasure special moments.

These next two weeks, I want to live life as if these are her last few weeks. We’ll hope that they won’t be for sure! And I’ll act on faith that they won’t be as well. However it turns out, I will know I had no regrets. And after all of this deep thinking for a summer Saturday, this weekend, I’m taking her swimming.

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A Sliver of Hope

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WOW! I still can’t believe we raised over $5,000 for Bello Machre. Thanks to all of you who donated and supported us for the walk.

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Catherine and Sarah after the walk.

Catherine will use the money to help with surgery expenses that are upcoming. She’s getting ready to have a pretty major surgery and I’ve had a hard time dealing with it, frankly. For a long time, I didn’t even talk about it. Then, I talked too much about it and was too cavalier. Now, I am trying to deal with the logistics on top of the extraordinary stress of thinking about just what a big deal this surgery actually is.

Don’t get me wrong. She’ll be in great hands with Dr. Freeman Miller at AI DuPont Hospital for Children. He’s among the best, if not the best, in the world. In fact, we asked a knowing doc at Hopkins if we should consider someone there for another opinion or as an alternate provider and he shook his head immediately and said, “No. Go there. You’ll be in great hands – he’s the best.” I’ll let that doc remain anonymous because if you know anything about Hopkins, you know they never refer out of their system. Even US News and World Report cites the accolades of the orthopedic group at AI duPont and ranks them #5 in the country. That’s all comforting.

But this is a big surgery. Catherine’s spine is curved 78 degrees so Dr. Miller will straighten it and will use a rod to hold it straight.

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See the marker at the 78 degree turn.

 

It really hit me when our therapist said, “Well, let’s do a lot of ball work because she won’t be able to do much after surgery.”

“You mean while she heals?” I asked.

“Well, no. She’ll not be able to bend over the ball after the surgery. Her spine will be stiff.”

Ugh! So, my snuggly little girl won’t be so snuggly anymore. The one who has cuddled up to my skin and Brian’s chest since she was 3 days old will sit erect. I’m sure we’ll find a way – some odd way – to hold her so we can snuggle together. It just won’t be the same. Actually, after every big event for Catherine – it’s never the same.

Her spine is not just curved side-to-side. It’s also curved front to back. In fact, we found out just how severe it was when we thought we felt poop blocked in her intestines. Unfortunately, she got the wrong end of all the treatments to try to fix that before we had an x-ray in the ER and they finally said, “What you feel through her belly is her spine.” Yowzie. I literally didn’t believe it. When we went to see Dr. Miller, he immediately confirmed it.

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You can see how much her spine is curving forward making her whole pelvis tip severely.

Hopefully though, we’ll get the results a friend’s son got. Hopefully Catherine will breathe better and get less seizures and not be in the pain she seems to be in now. And hopefully her organs will spread out  and grow correctly and enable her to thrive. I even think that if a rod is holding her spine straight then maybe she’ll be able to hold her head upright, too. I figure it’s possible and a girl’s gotta dream – especially in the face of this particular surgery. So, despite the laundry list of things this surgery will bring – all in some weird rule of “fives” – through some grace of God I find a tiny ray of hope. I’ll confess though. It’s really tiny.

She’ll be on the table for 5 hours. She’s expected to need 5 pints of blood. We’ve been told to plan on 5 days in the ICU (what surgery requires FIVE days in the ICU anymore?) and then another 5 days in the regular hospital. Our surgeon told us it’s the equivalent of an adult going through open heart quadruple bypass surgery. Yeah, it’s sort of a big deal. I’ll be hanging onto that sliver of hope picturing my little girl sitting straight and maybe even holding up her head.

And like everything in Catherine’s world since the day she was born, oh so small. We’ll sit in the waiting room in a few weeks, and we’ll just have to wait and see.

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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!

Time to Raise a Little Dough – and maybe get back to Disney?

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Hi all,

I don’t normally do this on my blog. This is a really great fundraising deal though, so I’m working hard to make it happen. Catherine gets help from Bello Machre and we’re walking on June 8 to raise money for them and for Catherine. The cool part is that Catherine gets HALF of the money we raise directly to her. AND if we raise $5000, our family gets to go to DISNEY! It would mean a lot if any of you reading could consider a donation and consider spreading the word to help raise some funds for this great organization and for Catherine directly. We use them for care and services and they enable us great peace of mind!

I’m in the process of editing some photos of our recent family vacation, celebrating 20 years of marriage! And I also plan to post soon about the softball team Catherine has joined – Dream Catchers. All coming soon, so stay tuned…

Thanks so much for any donation you can make. Take a look at this site:

https://bellomachre.ejoinme.org/26526

Hugs to all!

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Ellen

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.”