First of all, the agency got us night coverage and the nurses are showing up and taking good care of Catherine! Our prayers were answered. Whew!

In the light of that, it’s even harder to write what I’ve realized. Funny. Usually my fingers fly across the keyboard as the thoughts roll out of my head through my fingers to the keys which enable words to appear on the screen, and then I post for you to read. Today, as I get ready to write what I want to write – no, that’s not accurate – I don’t want to write it, I think I NEED to write it. Today, my fingers literally stop. Then I decide to change the subject in my head and they move again. Then I think about writing what needs to come out and they simple stop again.

How do I write it? How do I let the world know what I’ve realized with a blinding flash of horror? It’s actually not the world that concerns me. It’s the few people in the world who know me personally and read this blog. Those are the ones that stop my hands, especially those who know me well.

One of the things that has happened since I’ve committed more to writing is that I’ve become more aware of the audience. Of you. I sometimes think of the individuals who I know are reading because they tell me personally about their reaction to what I’ve written. And that’s created a different dynamic. I used to write for me. Now, I find myself writing very much aware of my audience. That’s both good… and hard.

I recently met with an author, Al DeCesaris, who graciously offered to spend time with me talking about how he self-published a book. He’s a really amazing guy who devotes his life to raising funds and awareness for his niece who is affected by Sturge-Weber Syndrome. I told him I wish he’d consider writing his next book about the family dynamic when a kid has disabilities. It’s tough. And that’s all I’ll write about that topic for now because I know they read my blog, and I’m not willing to go there now. Don’t even ask.

I am willing to try to share this big realization though. I just need to figure out how to get it out of my head – my heart and soul really – to my fingers through the keyboard , to the screen and onto my blog.

Dare I do it?

One of the things Al suggested to me was to read Stephen King’s book, On Writing. It is absolutely fantastic. I devoured it! He writes about how the first draft is for the author and the rewrite is for the audience. That’s probably how I shifted from writing for myself to becoming aware of my audience. And as that awareness has grown, it makes it harder for me to write what I feel I need to put out there.

Of course, now that I’ve written all the words you’ve been reading without actually getting to the confession, the confession will probably be a let-down to you, the reader. That’s unfortunate. It’s still a big confession to me even if all this writing in the middle of it has built it up to you so much that when I actually write the words, they will be small in your mind as you receive them.

Trust me – they’re huge to me. And scary. And evidence I’m not the mom a lot of people think I am. So it’s like a double confession – the actual act, which in this case is really an omission of action, and the reality that you’ll see that I’m not the mom you may think I am. And then there is a third layer, too. For this confession has to do with my faith. Again – something that people tell me they admire about me. Yikes! So, the real pain of the confession is that I’ll show you someone who doesn’t live up to your expectations. Well, I’m simply going to let that go.

I was taught by my abundantly creative mom what it really means to have faith as a mustard seed. She had the kids in our Sunday School program put a mustard seed in a shrinky dink and melt it into a necklace we could wear around our necks as a reminder that we only needed this much faith. Have you ever looked at a mustard seed? Go to the spice aisle and do it. They’re small, yes. They’re bigger than you think, though! And that leads me to the fourth layer of this confession. I’m not sure I have that much faith. Because if I did, I don’t think I would have stopped writing what I’m trying to tell you.

if you have faith as a mustard seed, you will say to this mountain, ‘Move from here to there,’ and it will move; and nothing will be impossible for you

So there. I’ve confessed all the layers and shown you my underbelly and fear and vulnerability. Well, OK, not really because I haven’t written the words. I’ve written a bunch of words related to this confession. The actual words of the confession haven’t worked onto the keyboard yet. I can tell they’re trying to come out though because my hands are slowing down to type this part. They realize I’ve danced around the confession about as much as I probably can and still have you continue to read.

Like I said, it’s not going to seem so big to you after all this build-up. And maybe that should make it easier for me to write it. Stop. My hands just stopped moving. Clearly it’s not any easier for me to type it. But sometimes you just have to jump – having faith that the net will appear. So, I guess if I write it, maybe that proves I have at least that much faith. Maybe that’s not so bad.

So, here goes…


Really? Again? Come on hands. Stretch. Breathe. Just put it out there. It’s not that big of a deal. Just type what your brain has realized.

Oh, right. It’s more than your brain. It’s your heart and soul. That’s true. I think a confession from the soul is probably more authentic anyway. So, just type it. The world will not end. I promise.


Geez. Maybe you can think about it like this. Maybe something great will happen if you just put it out there. Maybe someone will pick up the weight and free your soul. Did you ever think about that? Maybe… So push through the stop. Do those things you tell other people to do. Do that thing that scares you. Just keep typing and let it come out without any thought. Your fingers are flying now, let them keep flying.

OK! Here goes…

I’m not praying for Catherine.


Do One Thing

I woke up this morning excited to write about the gratitude I felt because day by day we were experiencing a full week of nurses despite the challenges of staffing. So many reached out after my last post, and I wanted to share that the skies were parting and we were getting back on track. I heard some cool words floating around in my head and I was excited about writing. Then I realized something… Brian didn’t sleep last night. Uh oh.

I ran downstairs. “What the hell happened?” Ugh – I just vowed yesterday to stop cussing. “I’ll have to start over on that one – more important things now,” I thought.

“What do you think happened?” he said.

“Did they call?” I asked, wondering if the agency said she wasn’t coming or if she just didn’t show up.

“Nope. She just didn’t show.”

“What did the agency say when you called them?” Normally, we call the agency if a nurse is late or doesn’t show and they start working to figure out what’s happening. Ideally, they try to get someone to come in for the shift. Let’s be honest, though. A call after midnight isn’t really going to intersect many people who could say yes – even if they answer the phone.

“I didn’t even feel like dealing with it. We can talk with them today. I don’t even care what her excuse was. She’s not coming back.” I understood and agreed 100,000%. This nurse has done this several times. I had even asked our scheduler if she really thought this woman would show up for this shift. “I wish I had that control,” she texted back. Smiley face.

Why does that happen? How does it happen? How can someone who professes to care about helping people (pretty much the textbook definition of a nurse) simply not show up to a shift? Does she even understand what it means to the family? Does she even think about that?

Sometimes I wish these nurses could spend a month depending on someone to allow them to sleep. I’m not sure they’d even understand then, though. A month isn’t exactly enough time to really understand the chronic challenge it is for a family with an already difficult situation not to have sleep.

I kissed Brian goodnight and started getting Catherine ready for school. My blog post twisted in my mind as I started thinking about how we could ask questions to determine if the nurse would be dependable. I have a friend who grew a company from 1 guy with a truck to over 400 employees doing electrical contracting work. When you ask him how he did it, he says, “It’s not that hard. We have one mantra. Just do what you say you’re going to do.”

Exactly. Do what you say you’re going to do. If you can’t do it, don’t say you can. And if you say you can, do all in your power to make it happen. Sure, things come up. Mistakes happen. And if this were the first time for this nurse, we’d certainly consider that. When it becomes a pattern though, it’s pretty clear you are simply not a person who does what you say you will.

We have a saying in our family, “Promise like a princess.” It came from watching a Disney commercial where emphatically, the voice-over uses the voice of Rapunzel and says, “I promise. And when I promise something, I never ever break that promise.” Sarah was at the impressionable age when those princesses really mattered. So I went with it. I even made a pillow that says it. IMG_1596 I want to raise her to be dependable. To keep her promises. To be someone that people can count on for whatever it is she says she will do. And if I get the opportunity to impress that upon Catherine, I absolutely will. Wouldn’t it be cool if somehow Catherine could become a nurse? She’d be the kind that always, and I mean ALWAYS, shows up.

I put Catherine on the bus and told the guys who make me smile every morning that we didn’t have a nurse. I lamented that it was hard for me to believe she just didn’t show up with no call or anything. One said, “I bet you’re tired from being up last night then.” I quickly explained how Brian takes the nights and I take the morning when that happens.

“We hardly see each other,” I said.

And then the driver made my day.

“Well, at least you can’t fight!” So true. And I remembered, there is always – ALWAYS – something to be grateful for no matter how bad it seems. I walked inside with my head a little clearer – grateful for the bus driver who made me laugh and grateful for the nurses who do show up for their shifts, grateful for the experience because it convicted me about how I want to raise my children, and hopeful we have a nurse who simply does one thing – show up tonight.

We’re down to one nurse working 2 nights all week. If you didn’t do well in math, that means we have 71.42% of the week without overnight nurse coverage. I have a friend with a severely disabled child, and she is not sure she even wants nursing. For us, I’ve been known to say it’s the single most important support we have for Catherine and our family.


Before we got nursing, for the first 3 years of Catherine’s life, Brian stayed awake 22 hours each day. I would get up early before work, and he would go to sleep for 2 hours before I left for the office and then he’d drag himself out of bed and be responsible for Catherine all day. Some of my cutest memories are walking in after work to see her sleeping on his chest. He’s sleeping, too. How could he not? Then he would sleep all day on the weekend to try to make up for what he lost through the week.

I remember desperately trying to get overnight nursing arranged for Catherine. So many forms to complete. So much anxiety. I’ve told folks I always felt like it was what I imagined a drug deal would be like. Very secretive. Not clearly understood except by those “in the know.” And lots of concern that one wrong move would be catastrophic. I still fear we’ll lose nursing somehow. Budget cuts are rampant. Someone might decide she’s no longer eligible. Impossible to believe that, right? The thought haunts me.

I hadn’t really thought about “losing nursing” by not having the shifts staffed. The result is nearly the same. The bottom line is that when we don’t have nursing shifts covered, one of us has to stay awake overnight and make sure Catherine is safe and cared for well. As we face that reality, I think about the effects of not having enough sleep. Sure, you can read about it on websites – irritability, obesity, loss of short-term memory, reduced immune defense. No one writes about the effects we experienced when we dealt with this chronically during the early part of Catherine’s life. The hardest part of not having nurse coverage and not getting enough sleep is that it puts tremendous stress on a marriage.

When we don’t sleep, we lose patience with each other. We don’t make good decisions. We can’t remember what we planned to do and we have little awareness of what might cause frustration. God knows we can’t really be helpful. We get sick and place more demands on each other. We eat poorly. We fight. We don’t talk. We don’t have energy for anything that’s not mission critical. It’s ugly. And I don’t like it one bit.

My marriage is my most important blessing in my life. I adore Brian. I want him to be happy. I want us to laugh and celebrate our 60th anniversary. In fact, I just wrote that on a goal sheet entitled, “In my life, I will…” So, faced with the possibility of a nursing shortage of more than 71% for our family, I’m trying to figure out how I’ll protect our marriage and keep our family functioning well. I keep reminding myself that we haven’t actually LOST nursing. We’re in a tough spot, that’s all. It shouldn’t last forever. There is hope every day that our agency will find new nurses who can care for Catherine well and stay awake. And without even knowing it – they’ll also keep our marriage and family healthy.

First Solo Step

I have racked my brain since Tuesday about how to write about what happened that day. Sometimes the image really is worth a thousand words. So take a look at this and realize this is THE FIRST TIME IN ELEVEN YEARS that Catherine has taken a step without any facilitation of her body and without any guidance on her gait trainer. This is 100% all Catherine taking her very first solo step!!!

If you want to watch the videos leading up to this one, click YouTube Catherine Walking 10.27.15. You’ll be amazed how fast she is with a teeny tiny bit of PT help.

Fly Catherine Fly!!

Yesterday, I got a text from our nursing agency. “Well, I spoke with [Nurse]. She is not interested in picking up any time with Catherine.”

What? I felt like I’d been punched in the gut. The nurse had told me the night prior at her orientation that she’d start on Sunday. I had liked her. Based on her smiles and conversation with Catherine and responses, I thought she liked us and would be a great fit. She even only lives ten minutes away from us.

After reading the text, I felt a feeling swelling inside of me that I didn’t really understand. It started in the pit of my stomach and grew out to my shoulders. It was black and hot and then it coiled itself up back into the pit of my stomach where it sat like a hard rock. I had felt the feeling a few months ago when I got let go from my job – much more intensely in that situation, of course. The feeling had the same character, though. It was the feeling of rejection.


All I wanted to know was why she didn’t want the case. Had I done something wrong? My mind raced through as much of the orientation as I could remember. I’d tried a new format and used a checklist. There is simply so much to remember to tell nurses about Catherine and we’ve oriented so many nurses. Even Sarah thought the checklist was a good idea. And so did the nurse. She said it was very helpful and asked me to leave her a copy when she started. Had I asked her something that offended her? Was the house too messy? Did she not like Catherine? How could you not like Catherine? She’d told me she thought Sarah was very smart, so I didn’t think it had anything to do with her. Could she not say yes, because she hadn’t met Brian? He was at class and we were eager to get to meet her so we’d decided to orient any way. I had told her how much he loves Catherine and what a great dad he is and that he was the “strong and silent type.” Did that cause her concern?

Why? Why didn’t she want to work with us?

I texted the agency back and when I didn’t hear back quickly enough, I called. The coordinator didn’t have any good reasons. “She said it was too much for her.” What does that even mean? I pushed a little and heard that Catherine was too heavy. “It’s one lift. I can run downstairs and lift her so she doesn’t have to do it if that’s all that’s standing in the way.” Our coordinator said she’d call and see if that would help. In the pit of my stomach – the same place the rejection feeling came from – I knew it wouldn’t. We’d been rejected for some unknown reason. And sure enough, the coordinator let me know a short time later that the nurse had turned off her phone.

I could continue to fight it and wrestle for a satisfying answer to the “Why?” I could try to convince the nurse that we were a good place to work. I’d even made that a point on the checklist – that we care about the nurses and want them to feel comfortable so they could watch TV, use our WiFi, put food in the fridge, use the microwave – and to let us know if they needed anything at all. The reality was that it didn’t matter. I’d learned that several months ago when the rejection stung more intensely. It never matters why because if you have to talk someone into it, it’s never really acceptance. The rejection always wins. And truthfully, rejection is almost always about the person doing the rejection rather than the one being rejected. It never feels that way though. Never.

So, when Brian got home, I told him what had happened. “Oh well,” he said. “Oh well?” That’s all he could say after my body was feeling all this energy spinning around? Granted, I knew some of that energy was connected to the more significant rejection I’d felt earlier in the summer. But seriously…. “Oh well?!”

Waking up this morning after some good sleep and seeing the sunshine, I realized he was right. “Oh” is the statement of recognition. Acknowledgement. Matter of fact. And “well” is the statement of what will be in time. It will be well. There is no space for the why. It ceases to exist or even matter. So, yes, rejection happens. The why doesn’t matter. And it will be well… in time.

The nurse didn’t show up last night. This seems like a statement you might make at a party when you realize a friend you were expecting didn’t attend. However the implications of a nurse not showing up are more substantial and have wider effects on our family. Of course they do. What’s interesting are the things I realized about marriage when it happened last night.

Brian and I typically kick into a really strong defense when this happens. In fact, oftentimes, I’ve thought Brian and I do better in the crisis than in the chronic.

“Do you need to sleep before I go to bed?” I asked him. Sometimes he does. Last night he didn’t. We don’t have to discuss who will stay up overnight and who gets the early shift. We used to, but it quickly became clear that he’s best overnight and I’m better in the early morning. Those roles work for us.

“OK, I’ll get up at 5 AM and you can go to sleep then.” It makes for an early day for me, and it lets him get to sleep while it’s still dark outside, making it much easier to fall asleep.

He ran to the RedBox to get a movie to help stay awake overnight. I managed Catherine’s oxygen levels and nebulizer treatments. Oh yeah, she’s sick right now and needs lots of extra attention. And then we parted ways to clock into our respective shifts.

At 5 AM, I came downstairs, hair unbrushed, eyes showing the tell-tale squint of someone who is being exposed to light well before her body is naturally ready for it. “How is she?”

“Fine, she’s on less oxygen.” Our supplier had brought new containers overnight because we realized we’d likely run out in the wee hours and Brian called to set up a delivery in the middle of the night. He gave me the rest of the report and I told him to sleep well as he kissed me before heading off to bed. He asked a question as he plodded up the stairs and my sleepy brain snapped back an answer in a tone of voice that made even my skin crawl. “Oops” I thought. And I never said anything more. Thirty minutes later, probably right when Brian was falling asleep, I had to interrupt him to find out when he last gave Tylenol or ibuprophen. We’d both forgotten that detail. He didn’t get upset with me for disturbing him as he was trying to go to sleep. We both realized it simply had to be done.


The sun began to peek through the blinds and I gave meds, adjusted oxygen, started a feeding and plotted out when I needed to get Catherine up to make the bus on time. “I’m not used to doing this,” I thought and said a little prayer of thanks (yet again) for the nurses we have and the many times they do show up for us.

As I went through Catherine’s routine, using the checklist I made to be sure the nurses cover everything, I realized how much I’d learned about marriage just because we didn’t have a nurse last night.

  1. Ask the other person if support is needed or whether you can do something extra to make it a little easier on each other.
  2. Give report often – well, for most people this means to communicate often, and make sure you cover all the details.
  3. Find the roles that utilize your strengths the best and do those – whether you like it or not. Sometimes stuff just has to get done and you may as well do what you’re best at to push through it most efficiently.
  4. Know what it will take to enable you to do whatever needs to be done and make sure you do it. Take care of yourself and allow each other to do that. We knew a movie would help make it easier, so Brian went to get it and I let him.
  5. Plan ahead when you can to prevent stress as best you can. We realized about 9:00 PM that we’d possibly run out of oxygen early in the morning. Rather than risk it, we called the supplier to have them bring it overnight making the morning much less stressful for me.
  6. Don’t get upset with each other when it’s the situation that’s to blame.
  7. And always – and I do mean ALWAYS – kiss each other goodnight… no matter what time “goodnight” actually is.

My fourteen-year-old car died last week. Literally. I was driving 70 mph on the interstate to meet my friends for bookclub and talking to a friend in Charlotte on the phone. I heard something go “zshuuu” and then lights popped on all over my dash and I realized I had no power. Steering was tough. Gas didn’t make it go. Fortunately, I checked and realized at least I had my brakes.

Bye Bye friend. It's been a great 14 years!

Bye Bye friend. It’s been a great 14 years!

“My car just died,” I told my friend. I wasn’t alarmed. I wasn’t scared. I simply stated it like I might tell her I was heading to the library. It simply was.

“What do you mean?” she replied.

“I mean it just died. I have nothing.” I think I may have even laughed.

“Oh no, are you OK? Do you need me to call 911?”

“Nah, I’m going downhill now, so I’m just going to coast and see if I can make it to my exit.” I didn’t. I did made it to the shoulder safely, hung up with my friend and then a string of events unfurled where my bookclub friends came to my rescue. I had the car towed to a reliable mechanic I trust who pronounced the vehicle DOA. And then I had to figure out what car to buy. Fortunately, I had done my research months ago. Unfortunately, I had never finally decided between two vehicles – the Hyundai Sonata or the Kia Optima.

This is not going to turn into a car review. Plenty of other bloggers do that. This is about making decisions and the difficulty in doing that because I’ve always watched my decision-making with astonishment. Sometimes the biggest decisions are relatively easy to make and the smallest decisions are the ones that are agonizing. Why is that?

For example, it wasn’t difficult to decide to put Catherine in surgery to correct her spine. And it wasn’t difficult to choose the surgeon. And even when she “crashed” in the OR and we had to go back in five days later to finish the job, the decision to do it, wasn’t difficult at all. Of course it was scary. The actual decision didn’t create much stress; the results of the decision created lots of stress.

So back to the car. Why was it so agonizing to think about these two cars and decide between the two of them? The reality was that the decision basically broke down like this: The Optima is more fun to drive and “fits” me better – seats are more comfortable, size felt good around me. There isn’t much room in the back seat, though and visiilbity is more limited. The Sonata has astounding visibility and more features like cruise assist and lane-departure warning and is bigger, with lots of room in the back seat. In fact, it felt really big. I felt like I was swimming in it.

I realized over time that the decision reduced down to what I wanted deep in my soul vs. what I perceived to be the smart or practical thing to do. I had started my car search months ago looking for a car that was “fun to drive.” My word of the year is ENJOY and I wanted to live into that word. The practical analysis kept getting in the way.

I found myself saying to Brian, “There’s no way I could get Catherine in the backseat of the Optima and it wouldn’t be a problem in the Sonata.” I was framing my decision in the world of her disability – even when her disability didn’t need to be a factor in this particular decision.

Brian reminded me that we have a van and I would be driving this car mostly by myself and that Catherine is probably big enough to sit in the front seat in an emergency. In hindsight, I think something in that freed me to make the decision I wanted to make – the one that felt selfish and less practical – the one that enabled me to enjoy. I went to test-drive them yet again, and as soon as I saw it, I knew what I wanted this time. I wanted the Optima. And suddenly, I felt calm about it. Sure, stress remains in how I’ll negotiate and where we’ll buy the car and all of those details. The decision, itself, though, is made. And like I said, I feel calm.

I’m learning to understand that when the decision is still filled with anxiety and swirl, when my mind is bouncing back and forth and up and down and not even beginning to approach anything even remotely calm, I’m not ready to decide. And so I shouldn’t. If I can learn to trust the process and ride that swirl like a rapid in the middle of the river, maybe I could enjoy the decision process more. The secret is to be watchful for the calm. And learn to choose the things I enjoy.


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