Wednesday, December 31, 2014

A Reflection on Time

I have recently jumped on the Timehop train. For those who may not know what Timehop is, it's an app that acts as a time capsule. The app searches past photos you've posted on social media, and gives you a historical screen shot of something you posted on a specified date in the past. Typically the time period is one year.

Here's my Timehop photo from one year ago.


I remember taking this selfie of me and Jeff on the last day of 2013. We were in the physical therapy room of Rancho Los Amigos, the rehab hospital Jeff spent five months in. He would stay in that hospital for the first six weeks of 2014, then he would - finally - come home so we could begin our new life early in the new year.

This whole Timehop thing has gotten me thinking about time. How so often we look back on our lives in one year increments and compare where we are now to where we were before.

During 2013, the year of Jeff's injury, that look back was always so hard. So painful. Because every time we looked back a year, we were reminded of the difficulties of our present situation. Christmas 2013 was, hands down, our worst Christmas to date. Not only did we have to spend it with Jeff in a hospital bed trapped inside a new body, but we also reflected on how just one short year prior, at Christmas 2012, we were so happy living our "normal" life. That Christmas I remember watching Jeff help Evie shoot her new bow and arrow across the living room. Christmas 2013 was bleak as we opened presents at our home without Jeff, and only later that day did we gather around his bed so he could watch, not help, his daughter open gifts in the uncomfortable surroundings of a semi-private hospital room.

But all of that changed this year. Because 2014 brought us something brand new - at least for the last half of the year. That's when we could look back a year, this time with the feeling that we were now in a better place than the prior year. Christmas 2014, while still very different from holidays past, was SO much better than Christmas 2013. This year Jeff got to watch Evie open ALL of her presents in the warm comfort of our home. Got to see, in person, the look of excitement and pure joy on his daughter's face. Christmas morning, Evie came out to the living room to find a new bike Santa had left for her. She promptly hopped on, peddled swiftly down the hall, smashed into the wall, then happily steered her new bike into our bedroom so she could show off her surprise to Daddy. His face lit up when she pulled the bike up to his bed.

So. Much. Better.

Just a few weeks after Jeff's injury, when everything was still so stinging like a fresh wound, a friend visited me and reminded me to not get caught up in comparing one day to the next. Not even one week to the next. Because there are too many ups and downs in short-time comparisons that make reflections both impossible and unbearable. I took this advice to heart, and still practice it today. It's funny how, day to day, time often has a way of making it seem like nothing has changed. But wait a while, let some time pass, then do your looking back. For only then will you see just how much change has taken place.

2014 allowed me to do this. To put an entire year, year and a half really, between the day our life changed and now. And it's made that one-year timehop easier to bear.

I'm sure I'll always look back on life before a spinal cord injury with a sadness and longing. I would be lying if I said I didn't miss our old life. I do. A lot. But I think a more accurate description is that I miss the conveniences of our old life. Jeff and I have chosen to not live in a state of longing for the past because that just diminishes our current, new life. And our new life is just as full of the good things as our old life was. The love of family. The companionship of friends. Watching our little girl grow into her own unique person. Despite a colossal shift in our life, we still have plenty of the good stuff.

And so time marches on. With one speed and one direction.

2015, here we come ...


Photo courtesy of Tereza Harper Photography



Monday, December 22, 2014

More Than Just a Voice

Evie has a three-story dollhouse in her room. She LOVES it.

We got it for her a few Christmases ago. Daddy Santa spent several hours putting it together on Christmas Eve. In looking back, we realize now that we probably gave it to her a little too early in her life. She honestly didn't even play with it much until last year. But now she's all over it.

There are several girl dolls that live in the house - about six big girls, two little girls, and one baby. Usually the scenario is that they are all sisters living in this ginormous mansion with no parental supervision. They do things like try on each other's clothes, bake all kinds of goodies, and have dance parties. They even have a pink unicorn that lives on the bottom floor.

And sometimes they have visitors. BOY visitors.

Enter Ken and Kirk:




I'm not exactly sure where we got Ken, but he's been around for a while. Only recently has he begun to interact with the girls though. It's probably because Kirk started coming around in the last few weeks, and now they're buddies. (Kirk is actually Captain Kirk - long story short, I'm a Star Trek fan, and my mom found my old Kirk doll in storage a few weeks ago)

When it's time to play dollies, like a high school drama teacher Evie hands out the dolls making sure you know the personality assigned to each one, and gives a rundown of the scenario we're about to enact. She is usually always the oldest sister who bosses everyone else around and determines what the group's next move is. Nana or I are typically assigned the role of the little sister who pretty much just whines all the time. And Daddy is ... you guessed it ... the boys. Both boys. Because each boy has a unique voice. Kirk's is deep and manly. Ken's is higher and rather effeminate.

When it's just Evie and Daddy playing, Evie does the hands-on work while Jeff does the voices. On the rare occasion that Jeff mixes up the voices, Evie the puppeteer gives him a scowl, and reminds him in a monotone growl, "This is Kirk, not Ken" to which Daddy abruptly changes to a deeper tone.

Their interaction is really quite precious. Sometimes I join in their play (where I am usually lucky enough to get to play one of the bigger girls, though I oftentimes have to endure Kirk's highly inappropriate advances). Sometimes I eavesdrop from the hall and just listen to them. Other times I enjoy their jibber jabber in the background while I do other things.

It makes my heart smile that Jeff can still play with Evie. That he's found ways to interact with her, and that she accepts those new ways without question.

But just behind my heart's smile is an ache. An ache that is only a shadow of the ache Jeff feels in his heart.

Last week, Jeff wheeled into the kitchen after a doll-play session with Evie, and I could immediately tell something was on his mind. I made him a tea to warm him up, and asked him what was wrong. He didn't answer right away. He sipped his tea while his thoughts churned. Then he looked up at me and said, "I wish I wasn't just a voice, you know?" I gave him a sad smile and a little nod. "I just want to grab her and tickle her."

We sat together in silence both feeling the terrible weight of this reality. We didn't break down in a sobbing mess of tears. We have before. But not this night. Sometimes the sadness of a situation simply washes over you quietly, leaving you feeling emotionally exhausted.

I tried to warm him with reassurances that the one-on-one time he now spends with Evie voicing her dolls is just as meaningful as the tickle sessions they used to have. That every day when Evie gets home from school, he is waiting for her with an I'm-so-happy-to-see-you smile, and she reciprocates with a big bear hug. That his presence in Evie's life has not been diminished by his injury. That he is a good dad.

But no matter how much I reassure him, how many scenarios I outline for him, I'll never be able to give him the thing he misses the most. No longer having the ability to physically touch your child has to be one of the cruelest consequences of this injury.

But I see first hand the way they interact. How they are so goofy with one another. How their laughter fills our home. How Jeff helps her with her homework. How Evie was so excited and proud to see him at her school's holiday performance. How Evie has to ask Jeff if she can be excused from the table, and waits for his determination on whether she can have dessert. How Jeff is still a commanding presence in our house, and how Evie respects him and sees him as her father first, a silly companion second.

I see the way he loves her, and the way she loves him back.

Being able to touch your children doesn't make you a good parent. Being able to connect with them does.

And Jeff and Evie have a most amazing father-daughter connection.

I can't wait to see how it grows over the years.











Thursday, December 11, 2014

A Holiday Surprise

Last weekend, our family got a pretty amazing holiday surprise. And we were reminded how blessed we truly are.

Last Sunday, one of Jeff's best friends, Chad, came over to hang out. I figured he was there to watch some football with Jeff. So when Chad arrived, we all chit chatted a bit, I made sure Jeff was in a good place, and then I headed back to the bedroom. You see, I had a plan. With Jeff occupied with Chad and football, and Evie with my Dad at the park, I planned to do something I'd wanted to do for over a week...

Paint my fingernails.

The simple act of applying lacquer to my nails is tricky for me in terms of timing. There's so much hands-on stuff I do for Jeff (and Evie!) that I have to be strategic when I do it.

So I figured I had at least a good hour. I sat down with a happy sigh and began to apply the paint.

I got two nails done when the doorbell rang.

"Ughhh" I sighed as I got up and started down the hall. Much to my surprise, Chad answered the door.  And in walked another friend, Dave. Chad and Dave pretended to be surprised to see one another and exchanged a knowing glance.

Something was up.

But still, I figured they were both here to hang out, drink beer, and watch football with Jeff. I gave Dave a hasty hug, and fled back to the bedroom eager to pick up with the manicure.

I got two more nails done when the doorbell rang ... AGAIN.

"Oh my god. I'm never going to get this done!" I said through gritted teeth. As I made my way down the hall, I could hear a new voice. Another friend had clearly joined the party, and this friend was Keith.

By the time I got out to the living room, Chad, Dave, and Keith were all standing around Jeff with little smirks on their faces.

Jeff and my words overlapped:
"What's going on?"
"You guys are up to something."

Lots of side glances were exchanged.

"We're here to put up some Christmas lights for you."

Jaws dropped. "Are you serious?"

My first thought was Oh Crap. We only have one string of lights in the garage that measures 24 feet. Not nearly enough to fit around the house. I know this because the weekend before, Jeff's parents had visited, and we got out said lights, took them outside, determined they weren't long enough, said Oh Well, and put them back in the bin in the garage. Plus, me getting on a ladder to take down Christmas lights after the holidays was out of the question.

Before I could even mention our measly light collection, we were reassured that our friends brought everything necessary to turn our house into Santa's village.

My second thought had to do with me on a ladder taking everything down. Again, I was reassured that they would be back to do cleanup as well.

My mom, Jeff, and I all stared at them - and each other - in awed silence. Jeff and I looked at one another with amazement. My mom and I hugged and cried over the holiday surprise that had just landed, literally, on our doorstep. The elves just giggled, happy they were able to pull off their ambush. And off they went.

They headed outside and immediately began discussing decor options. I was on hand to point out nearest electrical outlets, and Jeff was wheeling around the front yard, sure to put in his two cents' worth. There were buckets filled with strings of lights, extension cords, and extra bulbs. Ladders, staple guns, and zip ties were strewn about the lawn. Beers were opened all around. Apparently this was going to be a serious operation.

Keith brought his two kids, and when Evie returned from the park to see her friends in her front yard waiting for her, she was beyond thrilled.  They all three played amidst the chaos of Christmas paraphernalia.

Of course, I documented the whole thing.


Deep in discussion of Holiday Decor 101



The hanging has begun



Time out for a quick smooch



The kids loved playing and helping



That's some serious decorating



Time out for a beer



Keith, the orchestrator of this ambush, adds some finishing touches




The kids watching Frosty and listening to Christmas carols in Keith's car




Wow - we have some really great friends.

 

Lots of smiles.




The movies and Christmas music blasting from Keith's car ran down the battery! No fear - Keith was prepared and used this gizmo to start his car at the end of the day!


After a few hours of hard work mixed with some much needed social interaction with these friends of ours, the elves packed up and headed back home to their families. And our family headed inside to anxiously await sunset when we were told that, like magic, the lights would come to life.

And at 5 o'clock, as promised, our front yard illuminated. Evie announced in a booming voice, "THE LIGHTS ARE OOOOOOON! THEY'RE BEAUUUUUUUUTIFUL!"

We stepped out the front door and were met with the warm glow of holiday goodness. 




Evie danced like a sprite under the lights, and we all oohed and aahed at the transformation of our home. The holiday spirit was certainly felt by all.

Later that night, Evie went to bed early having been pooped out by the excitement of the day. And we got Jeff back to bed early as well. It was a tiring but fun day for everyone. In the late evening, I found myself with some rare alone time. So I decided to head back outside again, this time alone, to look at the lights. And in their reflections I saw the real meaning behind these lights.

They were a labor of true friendship. The three men who hung those lights were my husband's arms and legs that day providing our family with a message of love and support. They sacrificed time with their own families to help ours. And that left us feeling the comfort that surrounds you when you know you are loved.

I wish I could bottle that feeling. I wish I could adequately explain what that feels like. It's a form of love you only know when you've been through something that turns your world upside down. It's what grabs ahold of you and pulls you back. It's the thing that rights your world once more.

I went back inside, leaving the lights to shine on in the dark.

With my family all safe and sound and snug in their beds, I fell asleep with a happy heart ... and all 10 of my nails painted a lovely shade of pink.

Tuesday, November 25, 2014

Itches, Scratches, and Acceptance

I'd like you to try something.

The next time you have an itch on your face, don't scratch it.

Pay attention to how it feels. Probably something like an ant doing a little dance on your face.

You can try to alleviate the itch by moving your facial muscles, even tilting your head back and forth to see if that will help. Stretch your face long, then scrunch it up tight to see if that works.

It's likely the itch is still there. And it's probably multiplied in intensity by now. Or spread so that other areas are starting to itch. Maybe it feels like a whole army of ants are now marching about your face.

When you have reached the point where you can no longer stand it, call someone in from another room, and ask them to scratch it for you.

Be sure to explain exactly where the itch is. And how hard they need to scratch it. Is it the kind of itch that needs quick intense fingernail action?  Maybe it's the kind of itch that would be best alleviated with a firm rub of the fingertip. Or maybe you need one of those roving scratches that starts out in one spot and gradually moves in a plane along your face. Be sure to specify if the scratcher needs to go right or left because your right and left will be opposite from the scratcher's. "Go right - no, MY right."

If you've made it this far without scratching any part of your body, you've done better than me.

I think my point is clear.

Can you even imagine not being able to scratch your own face? I can't. As close as I am to someone who is paralyzed, I myself am not. And I really can't imagine not being able to do that task for myself.

A friend of mine recently sent me a link to a video about Travis Roy who became a quadriplegic in a college hockey game in 1995. (You can see the video here.) The video is very moving and contains commentary from people close to Travis, as well as Travis himself. His coach, Jack Parker, recalls visiting Travis in the hospital and tells about a moment where the reality of paralysis struck him.

"I used to go over every night after practice and visit Travis. About the fourth or fifth night I went over, it was the first time I was alone with Travis. He said to me, "Can you do me a favor, Coach?" I said, "Yeah, what's that Travis?" He said, "Will you scratch my nose.""

Jack Parker said it was in that moment he realized how hard things were going to be for Travis.

I think one of the greatest difficulties in living with paralysis is the realization that simple things like scratching your own nose is going to be accomplished so differently now. Your itches won't get the immediate attention that they used to. And not being able to scratch your own nose is just the tip of the iceberg.

Accepting a new way of life after paralysis is very difficult. But acceptance is a necessary part of moving forward. Jeff and I were just talking about this the other day. We realize that we've gotten to a point in this journey where we have accepted our new way of life, and that has helped us to keep going. Accepting something isn't the same thing as "liking" it or even truly being "okay" with it. Believe me, we aren't throwing any "Yay for paralysis" parties. I hate that my husband is paralyzed. Jeff hates it most of all. But in order to live with it, we must accept it. And that's what we've done.

Along with accepting comes adapting. And anyone who lives with a disability knows that adaptation is a necessity. In the face scratching scenario I described above, Jeff and I have come up with some ways to make this a little easier. We have key words and phrases to describe the location of the itch.

For example, what is the area called on the uppermost part of your ear, just under the flap? We didn't know either. So we made up a name. We call it the "high side." So when Jeff is squirming and making the I-have-a-crazy-itch face and he's saying "high side, high side!" I know right where to scratch. And if the itch is anywhere around his mouth, he just pokes out the spot with his tongue, and I know where to land the scratch. We'll be in the middle of a conversation and he'll poke out an itchy spot. I'll scratch it, and there won't even be a break in our discussion.

So as this day of Thanks approaches, I've decided to forego the list of what I'm thankful for because truth be told, I could write a list longer than Santa's. This last year and a half has given me more to be thankful for than all previous years.

I think what I'm most thankful for right now, at this particular time in my life, at this mile marker along our journey, is that Jeff and I have gotten to a place of acceptance. We are working together to adapt to this new life, discovering that teamwork is both a necessity and blessing. We have a deep mutual respect for one another, understanding that each of our roles is enormously difficult in itself.

We keep going because we have each other.

I scratch his itches because I know he would scratch mine if he could.

That's a lot to be thankful for.

You're my backbone, you're my cornerstone
You're my crutch when my legs stop moving
You're my headstart, you're my rugged heart
You're the pulse that I've always needed.
Like a drum, baby, don't stop beating
Like a drum, baby, don't stop beating
Like a drum, baby, don't stop beating
Like a drum my heart never stops beating ... for you

-Gone, Gone, Gone by Phillip Phillips







Thursday, November 20, 2014

Time Spent With a Dear Friend



Guess what I did last night (on a school night of all things ...)

I went out with a friend.

It was the first time since Jeff's accident that I'd done that.

And do you know what? ... I had a really nice time.

I've never been one of those gals who pals around with a gaggle of other ladies. I can count, on one hand, the number of best friends I've ever had. That's just me. I prefer one on one or small group interaction. The dynamics of a big group are simply too much for this introvert. So when the opportunity came up to spend some quiet time with a friend, I made myself make the time for it.

The particular friend I went out with last night understands my situation. She's known my family for a few years, so she's gone through the transition with us. She knew the old Sachs family, and she's been there for the new Sachs family. She's also been through a lot herself the last several years, and our mutual struggles have drawn us closer. Simply put, she's one of the few who "gets it."

We decided to go out in the evening - after dinners were had and families were pretty much settled in for the night. As I got ready to go out, I pulled on  jeans and a sweater rather than sweatpants and a pajama top, and I told Jeff how weird it felt to be getting ready at this time of night. First of all, it felt like it was midnight - and it was really only 7 pm. I was tired from a long day of working, driving around town to appointments and to pick up food, and playing with a 5-year old. Second, I felt like I was sneaking out of the house. Like what I was doing was forbidden. Jeff laughed at me and told me to have a good time.

Evie, of course, acted like I was leaving for a trip around the world.

"How long will you be goooone???" she asked as she tightened her grip around my waist. I told her only a couple hours. "So you'll be back before I go to bed?" Time is such a difficult concept to grasp at five years old. I told her she would be asleep soon after I left, and by the time she woke up in the morning, I would be back. "Oh" was her response accompanied by big, sad eyes.

This display was not helping get me out the door. But I was determined to not let it stop me from going out.

I fussed over Jeff, making sure everything was just so, and I would have continued fussing if he hadn't shooed me out of the room. I flossed Evie's teeth in preparation for Nana brushing them, and I was reassured by Nana that she would hold down the fort while I was gone.

So with everyone in a comfortable holding pattern, I stepped out the front door.

It was so strange driving at night. I hadn't driven after dark in so long. I actually saw one house on our street already beautifully decorated with Christmas lights. As I pulled out into traffic with headlights in front of me and the Christmas lights shining in my rear-view mirror, I was taken back to last year around the holidays when Jeff was still in the hospital. I would drive the 25 miles to Rancho los Amigos in the evenings after having come home for a few hours to spend time with Evie. The Christmas lights would light my way, reminding me that this Christmas would be so different from any other. Some evenings Evie and I would go to the hospital together to eat dinner with Jeff. On those nights, we would say goodbye to Daddy, hold hands as we made the long walk to the parking structure in the chilly night air, and drive home listening to Christmas songs on the radio.

Tonight, however, I smiled as I drove knowing that Jeff would be home this holiday season. Thankful that I was driving to meet a friend rather than to visit my husband in the hospital.

My friend and I arrived at our destination - a small, local establishment - and immediately fell into easy conversation over a glass of wine. Not that our topics of conversation were light. In fact, they were probably heavier than most. But when you have someone to talk to who genuinely lends you both her ear and her heart, the words seem to flow effortlessly no mater how heavy the topic.

For two hours we sat together and talked. We told stories that gave one another goosebumps. We listened to each other with big, glossy tears in our eyes. We did cheers to our triumphs, laughed at our absurdities, and shook our heads in disbelief at how we, as people, can bear and endure the enormous difficulties of life.

At the end of our evening, I gave my friend a big hug thanking her for getting me out of the house, for not being afraid to talk about the messy stuff, and for being one of the few who really "gets it."

When I got home, everything was safe and sound. Nana was just climbing into bed, Evie was fast asleep, and Jeff was comfy and happy to see me. My world hadn't fallen apart in the two hours I stepped out of it, and that was a good thing.

As much as I want to stay in my little cocoon where it's warm and comfy (despite being filled with the aftermath of a tragic accident), it's important to step out every once in a while. To see what lies beyond the insulating walls. For it's only when we step out, look around, even look at ourselves from the outside, that we truly grow.

I'm thankful I had the opportunity to do that last night for a couple hours with a dear friend.

Monday, November 10, 2014

To Tame a Wild Carpet

Over the weekend, we finally got out of the house as a family.

It's been a while since Jeff's been out. The pressure sore on his foot has prevented us from venturing beyond our front and back yards. Lately he's had to wear a pouffy black boot to pad the bottom of his heel whenever he's in his chair. But on Saturday, I padded up his foot with all kinds of wound care supplies, and he was able to wear his shoes for a short period of time.

So off to the park we went.

Evie has been telling us this past week that she has finally learned to swing all by herself (!!!) She informed us, proudly, that she no longer needs the lunch teacher to push her. She's learned to pump her legs and use her arms to pull herself forward, and has discovered that these combined movements translate to perpetual motion.

The park we went to is actually Evie's school. The grounds are open on the weekend, so she was able to show us her new skill on the actual swing she learned on.

It was a big deal.

We all got out of the van, and while I was closing up, Jeff and Evie were off. Evie led the way with quick footsteps, and  Jeff cranked up the speed on his chair and whizzed through the open gate. She was on the swing, pumping away, grinning from ear to ear by the time I got in the gate.

Jeff and I found a nice spot in the shade, and we watched as our girl reveled in her new ability.

While she swung, she started telling us all kinds of things about school. Why is it when we ask about school she never has much to say? It's when we're least expecting it that a whole slew of stories comes out.

She said she was so glad to come to the swings on the weekend because during school days there's a timer out by the swings, and you can only swing until the timer dings. Then it's time to get off and give someone else a turn. But on Saturdays and Sundays, "I can swing as long as I want." :)

She also told us the names of some of the animals on her school's farm. (Her school has a working farm on the grounds complete with all kinds of animals and a garden for each class). There's Roxy the girl sheep, and Goy the boy sheep. And there's Cookie the black and white bunny whose "carriage" is decorated with butterflies and dragonflies. And of course there's the massive desert tortoise who (in my opinion) has the best name in town: Mr. Tortell.

After swinging "as long as she wanted to," she was off to the big kids' playground - the one the Kindergarteners are not allowed to play on during school. She thundered across the blacktop with Jeff hot on her heels. Once there, she climbed like a monkey on the structures. The big playground is close to the edge of the farm, so we got to see some of the animals she told us about. She pointed out Roxy and waved to her. We tried to get Roxy to come to the fence so we could take a closer look at her, so Jeff made a clicking noise with his tongue in an attempt to lure the animal closer.

The clicking noise he made sounded just like the clicking he does when his air comes off. Our family has been conditioned to respond immediately when we hear that sound. I knew what he was doing, so I didn't need to check the connection. But poor Evie was at the top of a slide when he began clicking. I saw her as the sound registered in her brain. She looked up quickly at Jeff and shouted, "Oh NO!"

We apologetically told her that Daddy was just trying to get the attention of the sheep, so there was no need to worry. Our words were met with a stern expression and some chiding: "Daddy, you shouldn't make that noise. It sounds just like when you need your air. You should make a different noise when you are calling the animals."

I guess she told him.

She went back to playing and Jeff and I enjoyed watching her. Jeff especially enjoyed letting the warm sun soak his face. Since he's usually cold most of the time, he loves warm weather. At home, he's like a cat - he'll find the beam of sunshine coming in a window and maneuver his chair into that spot so he can be warmed by the sun. Today, outside, he was like a lizard sunning itself on a rock. He turned his chair full into the sun, closed his eyes, and let the rays warm his body. It was nice to see the little smile on his face as he sunned himself.





The next day, Sunday, Evie asked if we could go to the park again. This time it was just me and her. As we walked along the blacktop, I was taken back to a few weeks ago when I took her to a different park. Jeff hadn't been feeling well, so it was just me and Evie then, too. As she played that day, in the background was a little boy who was learning to ride his bike without training wheels. His dad was next to him, pushing him along, encouraging him to keep pedaling.

I watched this father and son as they made memories of this momentous occasion. I smiled sadly for behind my sunglasses were tears of pain, knowing that Jeff will never be able to run next to Evie's bike, his hand letting go of her seat as she wobbles along the path of transitioning from a little kid to a big girl.

Sometimes the sadness of this injury is so overwhelming.

Back in the present, I sat on a swing next to Evie while she swung happily into the air, her hair blowing all around her face.

As she pumped, she sang a song from Sophia the First:

To tame a wild carpet
You can't be afraid to try
You gotta hold on to the tassels
And reach up for the sky!

Just as I was about to fall back into the sadness of Jeff not being able to experience this moment, I realized that all too often I let the sorrow of a life left behind take over occasions like this. To the point that I forget to live in the here and now.

Evie sang the song again, and this time I listened closely to the words. I felt like they were speaking directly to me. So for the first time in a long time, I began to swing too. Evie's eyes lit up when she saw me.

"Mama! You know how to pump too!" We both smiled and laughed.

After the swings, we walked across the blacktop and I told her how my dad (Papa) used to take me to my school on the weekends and how we used to play wall ball. I explained to her the rules of the game, and told her - much to her delight - that I would get her a ball soon and teach her how to play.

Then we walked around the perimeter of the farm, checking out all the animals. We watched bunnies nibble on a pile of fruit the farm volunteers had left for them. We saw two ducks fight and bite one another over a piece of celery. And we marveled at the volume of the rooster's call.

We even had a close encounter with the wonderful Mr. Tortell.



Finally, before heading home, Evie wanted to try sliding down the big pole on her playground. She hadn't gotten up enough courage yet to do it on her own, without help. After she went down it a couple times with me barely holding her, it was apparent she could do it easily on her own. She just needed encouragement. After some tearful moments followed by my weak threat to just get in the car and leave, she faced her fears and slowly, methodically, slid down the pole ALL BY HERSELF. As her feet touched the sandy ground, she looked up at me, red faced with remnants of tears still in her eyes and blurted out, "That was fun!"

It felt good to experience this "first" together. Just me and her. For her to experience that feeling of accomplishment in gaining a new skill, and for me to allow myself to live in the moment with my daughter.

I felt like I'd tamed a wild carpet.

It was a good feeling, and it was a good day.

Thursday, October 30, 2014

A Rat's Tale



This is the tale of two rats.

Over the last several months, the Sachs' backyard has been blessed with the presence of not one but two uninvited rodents.

We live in a very urban neighborhood, so rodents are not things we generally see much of in our yards. At least not until recently.

The first of the vermin appeared a couple months ago, at dinnertime of all things. My mom was out of town, so Jeff, Evie, and I were all eating a quiet family meal together. At meals, Jeff pulls his chair up to the side of the table, and he and I sit next to one another so I can feed him. We always sit on the side of the table that faces the backyard. It was a lovely evening, and we had the blinds open to enjoy the splendor.

Mid-way through the spaghetti with meat sauce, Jeff abruptly says, "Oh my god there's a rat in our backyard."

Me: "What?"
Evie: "WHERE?"

In unison, Evie and I leaned to the left to get a better view.

There he was, slowly making his way across the concrete toward the brick fire ring.

His lack of speed signaled he was either sick or injured.

He found the side of the fire ring, and apparently he was quite comfy there. So he snuggled up against it, put his nose to the ground, and stopped to rest - or perhaps to die.

My appetite was immediately thrown out the window. I sank down in my chair, and stared at the little beady-eyed booger, with a look of absolute loathing on my face.

Jeff said what I already knew. "You're gonna have to take care of it."

I knew the truth of the matter, and I turned to him slowly and said in a low, dry voice, "You've got to be f***ing kidding me."

Evie was on her feet at the door jibbering about the rat, regaling us with tales of where he came from, how he's probably sick, maybe he ate something that made his tummy upset, I wonder what his name is, look at him he's sooo cuuuuuute!!

Jeff's appetite was unaffected by the appearance of the rodent, and he spurred me to keep feeding him. I mechanically shoveled the food in his mouth, my thoughts bouncing from one scenario to the next on how I was going to confront this rat.

Offhandedly, Jeff asked, "Do we have a shovel?" to which I answered, "I am NOT smashing the rat."

After 30 minutes, we figured the rat was pretty close to dead, so the plan was for me to pick it up with the pool skimmer, put it in a bag, and dispose of it in the outdoor trash can.

I went back to the bedroom to put on my sneakers. As I tied my shoes, I was wishing I had a good pair of work gloves and lamenting the fact that the only pair of gloves I actually owned were made of soft chenille with fuzzy poufs at the wrist.

Evie's shrill voice broke into my thoughts, "IT'S MOVING!"

Apparently the rat wasn't as dead as we all thought. I scurried down the hall and joined the rat in the backyard as he lumbered across the concrete into the thick plants along the side of the house. As he disappeared into the brush, my relief overflowed. I turned to Jeff and shrugged an "Oh Well."

"Let him go," he said. Like I was really going to go into the bushes after the darn thing.

Fast forward a couple months, and once again, during a family meal - this time with Nana present - Jeff exclaims, "Oh my god there's a rat on our pool cover."

Evie, Nana, and I all darted to the back door. Sure enough, there's a rat - doing an awkward lurch/crawl/side shimmy down the middle of our pool cover.

This time, I knew I had to act fast. You see, our pool cover is two separate pieces - cut that way for ease of taking it off and putting it on. And the rat was fast approaching the break in the two pieces. It's unlikely he would successfully make the journey to the second piece. The more likely scenario is he would fall through the split and meet his demise at the bottom of the deep end.

I ran back to the bedroom, fumbled to put my shoes on amidst the shouts from the kitchen ("Hurry, he's getting closer to the split!"), raced back down the hall, flew out the back door, flung open the pool gate, grabbed the pool skimmer (from my first plan), and scooped up the rat before he touched the water.

Here's where I went wrong. For as Jeff so delicately pointed out to me after everything was said and done, I did not have a plan. What was my purpose in scooping up the rat? To save it from drowning? To simply get it out of the pool? To kill it? I had no idea. And so I froze.

I guess I expected the rat to just lie there all waterlogged in the pool skimmer. I could NOT have been more wrong. As soon as I lifted it into the air, that little guy sprung to life. He dug his sharp claws into the net and began to CLIMB OUT!

I yelled out and swiftly swung the skimmer over to the small grassy area as the rat flopped onto the ground. I snapped the skimmer down around him and trapped him underneath. As soon as the skimmer hit the ground, I realized that I now have a live rodent trapped by a flimsy pool net. I was beginning to think a dead rodent at the bottom of the pool might have been better. I think it's safe to say that both the rat and I were now in a precarious position.

I could hear yells from the peanut gallery stationed just inside the back door. Jeff's voice isn't as strong as it used to be, so I couldn't make out his words. But luckily, Evie was repeating everything he said at the top of her lungs.

"Scoop it up and throw it over the fence!!!"

Even if I was able to scoop it up from my current position, I wasn't about to possibly subject an innocent passerby to a rat to the head, so the fence idea was no good.

My mother's bright idea was to introduce two plastic terra cotta planters to the scene. She came up behind me carrying them.

"What are those for?"

"I dunno. Maybe to trap it underneath. Then we can go get the neighbor and ask him to take care of it."

She crept around the other side of the pool toward the already trapped rodent armed with her trusty plastic planters. As she got in closer, the slimy rodent tail slid out from under the skimmer toward her. She flinched and let out a mortified yelp.

I told her to go back in the house.

As I tried and tried to scoop the rat back up into the net, it became increasingly apparent that the effort was futile. My only option was to a) let it go, or b) smash it. And as I'd already made clear in the encounter with the first rat, I was not about to smash it.

My mom was now shouting that Jeff wanted me to come to the back door so he could talk to me. I guess he expected that the rat and I would just call a 30-second time out so I could go talk to my coach before once again resuming our veritable tug of war.

I explained that once I let go of the skimmer pole, the war would be over. So unless someone wanted to come out and relieve me of my position, I wouldn't be able to chat right now.

The peanut gallery was oddly silent.

So I took a deep breath. I stared down the pole at the rat, made up my mind, and said, "All right, buddy." I pushed the skimmer slowly toward the edge of the backyard where two rows of bushes meet. The rat was scurrying beneath, sometimes losing his footing and simply rolling along. We made it to the bushes, I ensured the rat was facing away from me and had a clear view of his new oasis, and I lifted the net.

He rocked back and forth a few times, then he slowly made his way into the bushes.

I turned around, hosed off the skimmer, and went inside to pour myself a glass (or two) of wine. I said a cheers to the rat and our mutual stand down.

****

So why, exactly, am I sharing this story other than to highlight my pathetically hopeless exterminator skills?

Because this is the stuff Jeff should be doing. This is the stuff he wants to be doing.

As wild and humorous as the night was, it's still hard to face these scenarios. To accept that these types of jobs - the yucky ones that guys are generally just better at than girls - are no longer Jeff's to handle. They will always be mine to physically accomplish.

And that just sucks.

But hey, at least I still have Jeff to advise me on stuff like this. Granted, given the situation that insight can range from the indispensable (remember the BBQ post?) to the idiotic ("Throw it over the fence!"). Still, I couldn't ask for a better sidekick.

Who knows, one day I might actually be able to add "accomplished exterminator" to my bag of tricks. :)

God, I hope not!

***UPDATE***

In 2015, we moved to a new home in a new state. And in 2016, a mouse had taken up residence in our BBQ. Here's a video of me and Evie setting - and checking - mouse traps. If nothing else, Evie's narration is hilarious. Enjoy!


Saturday, October 25, 2014

The Smallest of Measurements

It seems our life is dictated by the smallest of measurements. Inches, fractions of inches even, make all the difference.

Let me explain.

Two weeks ago, on a Monday morning, I was washing dishes at the kitchen sink. Jeff's caregiver was back in the bedroom tending to Jeff. I heard her footsteps come down the hall and she greeted me in the kitchen.

"Kristen?" she said in her sweet, quiet voice. I turned around to face her. "Did you know Jeff has a ... bruise ... on his left heel?" She knew her words would startle me, so she said them in the most delicate manner possible. Bless her.

We hurried down the hall, and I knelt down to look at the bottom of Jeff's heel.

There it was ... a purple bruise the size of my thumb print just under the surface of the skin.

From Jeff's vantage point, all he could see was two faces staring intensely at the bruise. I knew he could tell I was both worried and bewildered. I probably should have tried to conceal my concern a little better, but there was no use pretending.

He peppered us with questions. "What does it look like? How big is it? What color is it?"

We described it in detail, took pictures of it, and tried to figure out where it came from. We checked his orthopedic boots he wears at night to see if perhaps a spider had gotten in there and bit him. Nothing.

As we discussed the possible causes of the bruise, I could hear the voice in the back of my mind telling me what this bruise really was. A dreaded pressure sore.

My heart sank as my panic rose.

We've had experience with a pressure sore in the past, and it ended in surgery. Jeff developed a terrible pressure sore on his tailbone in the months following the accident. By the time doctors began aggressively treating it, the sore was so deep and infected, it wouldn't respond to treatment. I remember crying in the car when I would drive home from the hospital because I was scared to death of that pressure sore.

I am convinced that the pressure sore surgery saved his life. That sore was eating away at his body. He ended up having two inches of his tailbone removed because it was infected. If we had waited any longer, the infection could have spread throughout his body.

He had the surgery 3 months and 8 days after his injury. That's how quickly a pressure sore can get out of hand. And that's why I hate them so much.

In facing this new sore on the heel, we backtracked to try to determine how and when it happened. While Jeff watched football on Sunday, he settled into a comfy position in his chair with his feet extended out a little more than usual. He diligently did his pressure relief by tilting his chair back and forth to alleviate the red spots that tend to develop on his elbows and rear end. He always does a great job at his pressure relief. But the one thing he didn't do that day was change the position of his feet as they reclined higher than usual. He just figured they would be covered in the tilting pressure relief he usually does. I thought so too.

That night as I got him ready for bed, we went through the nightly responsibilities quickly as we were excited about our favorite show making its long awaited season 5 debut. So as we settled in to watch The Walking Dead, it's likely I overlooked the developing bruise.

On Monday morning, I was kicking myself for not doing a better job.

We're still dumbfounded at how one small change in his routine - reclining his feet an inch higher than usual - can have such dire consequences. Plus, his right heel is perfectly fine. There's no pressure sore there. So it's likely his left hip was slightly forward causing his left foot to protrude just millimeters beyond the right foot. Both feet were pressed against the footplates. But the slight differences, simply put, made all the difference.

And so we're dealing with a new pressure sore. As long as we keep all pressure off it, we're hoping it will heal in time.

Jeff won't be able to wear regular shoes for a while - probably months. He is wagering that the mark left by this sore will still be on his foot this time next year. I think he's right.

Looking back on our journey, we have so many things in this new life that are determined by the smallest of margins.

Some days Jeff is totally comfortable in his chair. Other days, he is miserable. And most of the time it's because something is just slightly off. His shoulders need to be rotated, or one knee needs to be pulled forward.

I remember when Jeff was in rehab, one of the therapists was showing me how to adjust Jeff in the chair. He told me to rotate his hips. I looked at the therapist like he was crazy. I said, "I don't think I'm strong enough to move him like that." He said, "You don't need much strength. The slightest movement can have a big effect." He was right.

Sometimes my mind takes me all the way back to the day of Jeff's accident. I often wonder how different our lives would be if Jeff's injury was just one vertebrae lower. Jeff is a C4, and in very general terms (because no two SCIs are alike) his injury means he cannot breathe without a ventilator, and he has no movement below the tops of his shoulders. If he were a C5, not only would he would be able to breathe on his own, he would be able to move his arms.

Needless to say, those differences would be life changing.

But it doesn't do to dwell on the if onlys. We have to concentrate on the here and now and deal with the latest set of challenges.

And so we keep going. Taking this giant journey one small step at a time.

Photo courtesy of Evie

Saturday, October 18, 2014

A Hairy Situation

Chores, chores, and more chores. Our lives are filled with things we have to do. 

Think of all the chores in your life. There's always one that stands out as the one you dislike doing the most, right? It might not be the one that takes the most time. And it might not be the one where the most effort is involved. I'm talking about the chore that for some strange reason, you just don't like.

For me, the household chore I loathe is unloading the dishwasher. My feelings toward this chore are completely irrational. I don't know why I hate it. But each time I find myself opening a clean dishwasher, loaded with sparkling dishes, I groan. Ugh. Not again. I would much rather mop the floor or vacuum the carpets. Even do the laundry. But the dishwasher ... It's my nemesis.

Besides the household chores, my life is also filled with Jeff chores - the stuff I do to care for him. And just like the house, there's one chore that I dread each time we have to do it ...

Trimming his beard.

Again, completely irrational. There's so many other things I do that are ... how do I put it ... much more personally invasive. And frankly, most have a much higher yucky factor. 

There's just something about trimming his beard that I do. not. like.

My god, I wish there was a pill I could give him to stop the hair on his face from growing. 

Don't get me wrong, I like my husband with a beard - a nicely trimmed beard with tight lines - just like he used to wear it. Back in the old days. The days before I was in charge of grooming his facial hair.

I was looking at some old pictures just the other day, and came across one of my favorites of Jeff and Evie. Here it is.




Once I picked my heart up off the floor, I began looking at the picture more closely and thought. "Wow - Jeff's beard looks great here." 

Here's a visual of what I was seeing in my mind:




Believe me, I never truly appreciated the art of beard grooming until now.

It's just something, as a woman (who is not a hair dresser - or a barber) that I guess I never expected to have to do.

When Jeff was in the hospital, we went months without trimming his beard. It was only when the itching became too much for him to handle that he asked me to do it. I remember him instructing me which clippers to bring in, how to charge them, then how to HOLD them when I was in the act of trimming.

He reassured me that I couldn't screw it up. I laughed a laugh that said, Yeah, right.

I was so nervous. I mean, this was his FACE. What he presents to the world.

Back in the days before the accident, the only hair grooming I was in charge of for him was trimming the back of his neck after he would give himself a haircut (i.e. clipper cut). For the most part, I did a decent job, though we both remember, and would like to forget, the time I botched the left side so badly that I had to cut into the right side just to try to even it out. It was still lopsided until the next trim.

So I was going into this whole beard trimming thing with little confidence.

Over time, I'm happy to say I've made some strides in the confidence area, and perhaps my skills have increased a bit.

Still, it remains a chore I abhor. And honestly, I let waaaay too much time pass between trims.

Case in point.  Here is another heartwarming picture of Jeff and Evie I took just a week ago. They were caught sharing a taste of the brownie batter - one of their favorite things to do.




Once I wiped the sappy smile off my face, I looked more closely and thought, "Gah! His beard looks awful!"

Here's what my mind saw:


So needless to say, yesterday was beard trimming day. I don't have any photos, but I can assure you it looks better than the one above. I also confess that the only reason I gave in to the trim is because we're taking family pictures on Monday. And I couldn't have my husband looking all scraggly.

I really should get on board with the whole beard trim. If for no other reason, just to pay homage to the great job Jeff used to do.

How many times did I watch him trim his beard?

Hundreds.

How many times did I applaud him for his trimming skills?

Never.

How often do I wish he could raise his hands to his face and trim away?

Every time I turn on the clippers.

(Believe me ... the results would be so much better!)

Friday, October 10, 2014

The Name I Dreaded Hearing

Before Jeff's accident, we didn't know anyone with a spinal cord injury. No one in a wheelchair, even.

There was really only one person we knew of who had lived with this injury. Who had been thrown from a horse years before, who breathed using a ventilator, and who had died from complications due to paralysis. He had become the face for those who had suffered this type of catastrophic injury.

In the days and weeks following Jeff's accident, I had thought of this person, but wouldn't let my mind dwell on him long enough for reality to sink in. In those early days, I was still holding on to hope. Clinging to the idea that Jeff just might walk out of the hospital, and with some time and effort, our life would go back to normal.

I remember one of the ICU nurses talking to me about a week after the accident about looking into getting Jeff transferred to a rehab hospital. She named a couple that were relatively nearby, and I listened to her with a pleasant look on my face as if I were hearing her every word. What I was really thinking was Rehab hospital? My husband doesn't need rehab. Once he starts regaining feeling, once he starts moving his arms again, we're going home. 

I didn't even really know what a rehab hospital was.

But even then, deep down, I knew that that ICU room was just the beginning for us. But I had to go through the denial like everyone else who experiences a life-altering scenario.

After about a month in ICU, Jeff was transferred to the 4th floor where he was under close observation. Every day, countless doctors, nurses, therapists, and aides paraded in and out of his room. We got to know these people - their personalities. We got to know their schedules.

One night, late in the evening, Jeff was almost asleep, and a night-shift respiratory therapist came in to administer a breathing treatment. She was one of the more - truth be told - annoying therapists. She always talked too loud, and her stories tended to linger just to the edge of my patience.

Like the nurse in ICU, she started in on the topic of rehab hospitals. After a minute or so of hospital chit chat, she looked at me and said, "You know, Christopher Reeve considered coming to Southern California for his rehab before deciding to go to one in New York."

I didn't hear anything else she said.

That name - Christopher Reeve - was ringing in my ears.

My heart was pounding heavily. I hoped Jeff was asleep and didn't hear her because he and I hadn't yet talked about that name.

I wanted to smack the therapist across the mouth as if she'd said the dirtiest of words. While she chattered on, I was screaming at her in my head Shut UP! How DARE you say that name in front of my husband! Don't ever say that name again! My husband is NOT like Christopher Reeve!

But of course, that is exactly who he was like. And as annoying as that therapist was, she was the first one to make me face that reality. Like Reeve, my husband - my super man - was stripped of all his physical ability and strength in the blink of an eye. And in the prime of his life.

That evening, after Jeff was asleep for the night, I Googled Christopher Reeve for the first time and read the details I didn't want to know, but knew would open up a whole new world for me.

I remember hearing of Reeve's accident when it happened in 1995. I was just out of high school, and was shocked at the news wondering how something so awful could happen to someone so vibrant. I recalled seeing pictures of him in his wheelchair with a tube coming out of his throat. I even recalled seeing his wife Dana by his side - knowing only her name, that she and Reeve had a young child at the time of his accident, and that she had tragically died just a year after her husband.

I laid in the cot in that tiny hospital room with tears trailing down the sides of my face wishing I could talk to Dana right now. If anyone could understand, surely she could.

But unlike me, Dana had no organization to turn to for help, advice, information, or just to find people in similar situations.

So Dana and her husband created one. The Christopher and Dana Reeve Foundation.

And for the first time, I visited that website and my mind was spun by what I saw - stories of injuries, pictures of people in wheelchairs living, actually living, with paralysis, statistics on spinal cord injuries, and endless information on things like medical research and financial assistance.

It was all too much to take in at one time. But what I did take away was that Jeff and I weren't alone in this. There is a whole community of people dedicated to helping those with spinal cord injuries maximize their recovery and learn to live again - due in large part to one man: Christopher Reeve.

Today, we have a magnet on our fridge of Christopher and Dana Reeve. She has her arms around him, and they are both smiling. When Evie saw the magnet, having no clue who these people are, she simply said, "Oh look, he's got a vent, just like Daddy."

THAT RIGHT THERE - Evie  being able to recognize that there's other people out there like Daddy - that alone makes this journey just a little easier to bear.

I am still learning about Christopher Reeve and his wife, and the legacy they left behind. Today is the 10th anniversary of his passing, and his foundation is rolling out some exciting news in the SCI world about the latest research and therapy.

My husband is not a famous actor. He's not an acclaimed director. And it's unlikely he'll ever start a foundation that will change people's lives. But he is forever linked to Christopher Reeve by the stark fact that they share the same catastrophic injury with almost identical outcomes: total body paralysis.

The main thing I take away from all this is simply that even though Christopher Reeve was an accomplished individual before his accident, he was able to continue those accomplishments - and more - even after becoming a quadriplegic.

And in that, I find hope. And the acknowledgement that there is, indeed, life after this injury.

Thank you, Christopher Reeve.

Thank you.


Photo by Timothy Greenfield-Sanders from



My Super Man


Monday, October 6, 2014

Our Little Helper

Evie is an incredible helper.

Helping and nurturing have always been in her nature. When she was a toddler, she would lovingly lay all of her stuffed animals on her bedroom floor for naps, then wake them up with little kisses or soft stories.

In pre-school, and even now in Kindergarten, she is always so happy when she gets to help the teacher do something like pass out supplies or clean up the classroom.

There's no doubt that her instinct to help has proven itself an coveted blessing in our new life.

Still, Jeff and I are extremely conscious of how much help we ask Evie to perform with his daily care. We desperately want to strike a balance by including her in our daily chores but not burdening her with oppressing duties.

Some days we rely on her heavily. To help when we need her. To ask her to wait patiently when Daddy needs something.

And other days we try our hardest to let her be a normal kid. To say yes quickly when she asks a question and turn our wholehearted attention to her smiling face.

Most of the time she performs her duties with a skip, and a smile. Sometimes she is in and out of the room turning the vents on and off so quickly, her presence is a blur.

Will she, as she gets older, have moments where she scoffs at us for asking her to help with Jeff's care?

Absolutely.

Will she have times of frustration and anger at not being able to do things other families can so easily accomplish?

No doubt. We've already experienced some of that.

Will she grow up knowing that her presence in our home and in our lives has made all the difference in our world? That her contributions, her sacrifices, have not gone unnoticed?

It is certainly our hope.

Soon after Jeff came home from the hospital, we decided that we would carve out some chores specifically for Evie. We have assigned her these roles in Jeff's care for several reasons. We want her to feel included. We want her to not be afraid of these duties as she grows. And sometimes, frankly, we just need her help.

Because these duties are a big part of her life.

Evie's hands-on role in caring for Jeff has not only served as a way to build her sense of responsibility, but has also strengthened the unbreakable bond between her and Jeff.

Evie and Jeff have always shared a strong father/daughter bond - from the day she was born. Last year when Jeff was injured, and out of our home for seven months, that bond was tested. My heart sobbed because Evie and Jeff couldn't physically be together during that time. The pain of the realization that Jeff will never physically hold - never physically play with - his daughter again is agonizing. It is an ache that seeps down into your bones and invades your entire body.

And no one has felt that ache more than Jeff.

I've held him as he's cried at how this injury has stripped him of his role at being Evie's big, strong Dad. I've reassured him, tirelessly, that he is just as much the father to her as he was before the accident. And since he's been home, I've witnessed an incredible transformation in their relationship that, to me, is a strong indication that that bond is indeed still intact.

But no one can convince him that he is, in fact, that same old Dad deep down inside.

No one, but Evie.

She doesn't even know it, but every day, in the little things she does, she's reassuring him.

Like when she belly laughs at the silly faces he makes.

Or when she nervously approaches him and asks him whether or not she can have dessert.

Or when, in the evenings, as my mom and I roll Jeff onto his side to remove the transfer sling, she scampers to the side of his bed and plants kisses on his puckered lips, then they both share a giggle as if they've done something ultra sneaky.

It's those times that, when Evie can just be a kid - a daughter, that we know she is thriving in this new life.

But even though she loves just being a kid, there's other times when Evie embraces her inner caregiver, and she becomes very protective over Daddy. And what she transforms into is astounding.

This happened a few days ago.

We had an intense heat wave in So Cal over the last several days. Temperatures have been in the 90s where we live. That's really high for coastal living. We don't have air conditioning in our house because, most of the time, we don't need it. So we've been surviving using fans and strategically open windows and doors to maximize cross breezes. Still, it's. been. HOT.

Jeff's body just doesn't regulate temperature the way it used to. So as the rest of us were sweating amidst the sweltering temps, Jeff was overheating without even realizing it. Jeff doesn't sweat anymore below his his neck - another side affect of having a spinal cord injury - so he doesn't usually realize how hot he is until he's miserable.

About half-way through dinner on Friday, his appetite dumped, blood pressure rose, and he had to take refuge in the coolest room he could find - our bedroom. Working quickly, I took off his shirt, wiped him down with a cool washcloth, and put the fan on him.

As I went back out to the kitchen to clean up, Evie decided she would "watch on" Daddy in the bedroom. So she kept him company as I cleaned. A little later, I was heading down the hall to get the broom from the closet, and when Jeff heard my footsteps, he said, "Kristen - can you scratch my face, please?"

I came in the room ready to put my fingernails to work, when Evie let out an "Oh!" and hopped down from the bed. "I got it. I got it," she said, and extended her arm toward me with her palm facing out - a gesture telling me to back away. He told her where the itch was, and her little fingers made quick work of it. Then she turned to me and said, "Mama. You can go back to your work."

"Are you sure?" I asked, eyebrows raised, looking at both her and Jeff.

"Yes," was her confident reply. "Go back to your work."

And she shooed me out of the room.

After sweeping the kitchen floor, I came back down the hall and put away the broom. I peeked into the bedroom, and Evie had a freshly wet washcloth, and was wiping Jeff's arms down. Then she laid it across his chest and said sweetly, "There you go, Daddy."

I caught Jeff's gaze. We smiled at each other with glossy eyes, sharing in the knowledge of our good fortune at having such a sweet, loving girl.

The next morning, she did her weekend a.m. duties of raising Daddy's head up using his bed's controller, then getting the table in place next to his bed for our family breakfast.

After orange rolls and bacon, she swapped her fuzzy princess robe for an Elsa dress and wig, and belted out a heartfelt, off-pitch, ear-splitting rendition of Let It Go in our bedroom.

She put her whole heart into that performance. Just like she does in every facet of her life.

She's a princess. She's a kindergartner. She's a helper. She's a caregiver.

She has the sweetest of hearts.

She is our daughter.










Even Queen Elsa has vent duties.