Monday, September 10, 2018


This year Evie entered the 4th grade. When she and I went to Open House at her school, her teacher talked about how 4th grade is a transition year. It's when students really start to think independently - to use the skills they've learned in previous years to begin expanding their knowledge.

The teacher said something that really stuck with me: "Your children are no longer learning to read. Now they're reading to learn."

We're also experiencing transition on another level.

This is the first year since Jeff's injury that I haven't written to Evie's teacher at the beginning of the year explaining that she is the daughter of a quadriplegic - that five years ago, her dad's injury forced a massive change in our family life, and that Evie has done a great job of handling it all.

This is the first year that it's been entirely up to her to decide if and when she wants to tell her teacher or her class about her dad.

Some days she wants to, and other days she doesn't.

And we've had to learn to be okay with whatever she decides.

* * * * *
Two weekends ago, Jeff had to spend a couple days in the hospital.

The following week, Evie was chosen in her class to talk about something that had happened the previous weekend. So she stood up in front of her class and said, "Last Saturday my dad had to go to the hospital."

She said over half the class raised their hands with questions. She was only allowed to call on two students.

The first asked, "Is your dad paralyzed?" At this point, there are quite a few friends at school who know about this fact.

"Yes," Evie answered.

The next question was, "Why did your dad have to go to the hospital?"

Here's what Evie said: "He was having AD - autonomic dysreflexia - which means his blood pressure was really high. My mom was trying to get it to go back down, but nothing was working. So we had to call 911."

Several students simultaneously mumbled, "What's auto...rama...flexa?" But the bell rang, and that was the end of her time.

I looked at my daughter - who was eating her spaghetti while she was telling me this story - and realized that I was witnessing a transition moment.

"You said all of that to your whole class?" I asked.

"Uh huh," she answered casually.

"Great job," I said. Not so much because she shared the information, but because of what she shared.

I can remember when she first learned to say "autonomic dysreflexia" and how proud she was to correctly pronounce a complex phrase. But now she wasn't just saying it. She was saying what it meant. She was showing that she understands that when it happens, it's a big deal.

Because in truth, Jeff's injury IS a big deal in our life. This isn't necessarily true for every person or every family who lives with a spinal cord injury. But it is for us. It's still new enough and challenging enough to warrant the label of a big f-ing deal.

I think in many ways, we're still transitioning as a family. We've got a solid understanding of the injury itself and all the side effects that come with it, but we're still learning to make room for it. We're still figuring out how to deal with this big, crazy, cumbersome thing that's pushed its way into our life and taken up permanent residence with us.

And each day we learn a little more.

Friday, July 27, 2018

Five Years (and a new bed)

Today is the 5th anniversary of Jeff's injury.

Every year I write a blog post on this day - to help mark where we are along this journey. At this point I feel like we're settling in for the long haul. We aren't newbies anymore. We have experienced a lot of "firsts" that have helped build up our resilience. But we aren't seasoned veterans either. This life still has a newness to it - sometimes even a foreign-ness - that quite often makes us feel like we're living on another planet.

But the last year itself has been pretty uneventful as far as living with a spinal cord injury goes.

So a few nights ago, I was lying in bed wondering what I would write about for my yearly anniversary post.

I discovered my subject matter just yesterday.

Every morning after breakfast, I pull Jeff up in his bed. He slips down a bit during the night, so I have this method I use to get him back into position, and it involves using gravity to our advantage. His bed is motorized, so I lay the head of his bed all the way down, and lift the legs up. So he's basically inverted. Then I go behind his bed, grab the end of the sheet that's under him, and pull him - sheet and all - all the way to the top of the bed. Then I lower his feet and raise the head of the bed so he's back to a "sitting up in bed" position.

We do this at least a couple times a day. And it works great.

Only this time, the bed had other plans.

After I pulled him up, I pushed the button that raises the head of his bed.


It sounded like a firecracker went off in our bedroom. We both flinched and looked at each other.

"What was that?/What the hell?" Our questions overlapped.

Since I couldn't just leave him lying there inverted, I continued to push the button to get his head up.

But nothing was happening.

I could hear the motor whirring, but it sounded different. And it wasn't pushing the head of the bed up. It was just spinning.

"Oh my god - your bed just broke!"

I have to admit, there was panic in my voice.

Luckily the motor that controlled his feet still worked. So I lowered those. At least he was lying flat now.

In my panic I kept pushing the head button over and over, hoping it would start to raise.


"Try pulling on the rails," Jeff suggested.

It worked. At least a little bit. So now his head was slightly elevated. My panic began to subside a bit. I tried pushing the button and pulling on the rails at the same time, and that helped get his head to about a 30 degree angle. But it wouldn't go any higher.

I then inspected where the pop came from. There was a large chunk of plastic lying on the floor beneath the bed, and I could see it was part of the motor housing. Maybe it got hung up on something as I was lifting the head of the bed. I guess the cause didn't matter now. What mattered is that the bed was clearly broken.

An operational head of the bed is an essential function on Jeff's hospital bed. We rely on it to help regulate his blood pressure. When it spikes due to AD, we have to raise up the head as high as it will go to help his blood pressure go down. And when he starts getting dizzy when his blood pressure dumps, we have to lay it down so his blood pressure won't plummet too far.

Now that Jeff was in a relatively comfortable position (lying at a slight angle pretty much staring at the ceiling), I began the unenviable task of obtaining a new bed - STAT.

I called the vendor that supplies all of Jeff's medical equipment. "James" informed me that the bed was out of warranty, which I found out a moment later meant we would need a new prescription for a new bed.

So I got Jeff's nurse practitioner involved. I called her directly. She works so closely with us that she knew immediately when she heard my voice that something wasn't right. I explained everything to her, and she was on it. A couple hours later a new prescription was faxed over to the vendor.

I called to follow up on the receipt of the fax, and once again got "James" on the line. This time he informed me that the order came over as standard, so that meant the bed would probably be shipped out to us on Monday.

It was Thursday.

The Kristen of 5 years ago would have reluctantly accepted this as the only possibility.

Luckily the Kristen of today has learned a thing or two in the last 5 years.

"No," I said. "That's unacceptable. My husband needs a functioning bed, and he needs it today. What do I need to do to make that happen?"

More texts, more phone calls, more faxes, and a lot of waiting later, I finally got a phone call from the vendor asking for a copay for the new bed. This was a good sign. It meant they were processing the order.

A couple hours later and one last follow up from me, and it was confirmed that a new bed would be delivered between 4 and 8 pm that day.

Still waiting on the new bed. One tired and anxiety-ridden couple here.
Now that the admin part of this fiasco was complete, the physical part started. I got Jeff dressed and out of bed and settled into his chair. Then I started breaking down the existing bed. I disconnected his mattress overlay and took apart all the wiring for other equipment I'd meticulously secured. When you have an electric bed, a ventilator with a humidifier, a breathing treatment compressor, and a rotating mattress overlay, there's lots and lots of cords to wrangle.

I disassembled everything and moved the old bed out of the way. I cleaned the floor beneath the old bed and since there's no time like the present, put down the new rug (with the help of my father in law) we'd been storing in the garage for the last month.

A couple hours later, the new bed was delivered. Our bedroom was in shambles for about 90 minutes while the new bed was assembled and the old bed was taken apart and removed. Finally, the room was cleared, and the new bed was in place.

The new bed is going in!

Success! - Oh wait, now I had to put everything back together.

First, Evie and her best friend hopped on the bed to do some intense quality control, making sure the motor was fully functional.

It was!

Our quality control experts

Then it was time to put the mattress overlay in place and re-wrangle all the cords, just in reverse. After some dusting and a final vacuuming, the bed was finally ready. And at 8 pm, I transferred Jeff into his new, fully operational bed.

Putting the mattress overlay back on

Final inspection

Back in bed

Talk about breathing a sigh of relief.


So here we are, 5 years into this SCI life, and I'm realizing that time doesn't necessarily make things easier. This broken bed scenario and the subsequent entire day spent remedying it is just one example of how quickly things can derail in this life. One thing breaks and the rest of your day is shot.

I suppose it's similar to what happened on July 27, 2013 at the beach. One minute things are going great. Then something broke. And everything derailed.

Only back then, when we finally got out life back on track, we found we were on a completely different set of rails with miles of unfamiliar territory to explore ahead of us.

At least this time, these rails are familiar.

And today we're working on getting our bearings back in line so we can continue onward.

If you'd like to read the other anniversary posts I've written, here are the links:

Year 1 (2014)

Year 2 (2015)

Year 3 (2016)

Year 4 (2017)