Saturday, May 31, 2014

Monitoring the Situation

When I shower, I keep a baby monitor on a ledge just outside the shower. The camera is in my and Jeff's room, and is aimed at his bed. It's a way for me to easily be alerted if something needs my attention. It's peace of mind for Jeff knowing that if the vent starts alarming or if he has an urgent need, he can just talk and I'll hear him through the monitor.

One of my favorite things about the monitor is that I sometimes get a glimpse of his and Evie's conversations. I often will hear a little voice come through on the monitor, and I'll peek my head out of the shower to see her sitting next to his bed on a stool (or maybe ON his bed) talking away. Sometimes they talk about what's on TV. Sometimes they talk about the Disney princesses and which one has the best hair. Or she explains to him the difference between a pegasus pony and a regular pony.

Sometimes Jeff will request a snack, and Evie will pitter patter into the kitchen, come back with said snack, and feed him while they watch TV together. It's really, really cute.

Watching Jeff and Evie interact since the accident has been both joyous and heartbreaking. I've witnessed such a transformation in Evie from the first time she saw him after his injury to now. Initially she was shy and scared of the tubes. But as Jeff began to heal, and especially when he could talk again, her timidness and fear melted away. Now he's just regular old Dad. When she comes home from school, she goes up to Jeff, and hugs his arm. Sometimes so tightly she shakes. She gives his hand a little kiss then runs down the hall to change her clothes.

Even though she doesn't say it, I'm sure she misses his touch and the way he used to physically play with her.

I know I do. 

I know Jeff does, too.

Jeff wants to hold her and touch her and tickle her more than anything in this world.  Not being able to do those things is, without a doubt, the hardest part of dealing with this injury. 

One of the very first things he asked me as he came out of sedation following his first neck surgery was, "Will I be able to hold Evie again?"

"I don't know," was my honest answer. We cried about it then. We still cry about it now.

But just like the other sad, overwhelming aspects of this injury, we don't stay in that mindset for long. We focus on the things that he still CAN do. He can still kiss her. He can still feel the warmth of her skin on his face as she wraps her arms around his neck to hug him. He can still parent her. He can still read to her. He can still play with her.

He's still her Dad.

I love these two more than anything else.

Wednesday, May 28, 2014

Handwriting on the ... Quilt

A few years ago, I made a quilt for Evie out of our favorite clothes she wore during her first year.

There are so many memories in this quilt. Amazingly, we can remember a story about each outfit. Like the brown and pink dress she threw up on while we were trying to take a family portrait. Or the purple chickie jammies she wore for months on end that seemed to grow with her. Or the lavender booties my mom so lovingly knitted for her.

On the back of the quilt, I put in several pictures of her wearing the clothes. Here's a shot of the back:

You'll notice on the sides of the family picture are squares of handwriting. One from me, and one from Jeff.

I had no idea at the time how precious Jeff's preserved handwriting would be. 

I remember the day I asked him to write a note to Evie for her quilt. I handed him a piece of paper and a pen, asked him to use his best penmanship, and write a note that took up a space of about 4 square inches. If you know Jeff at all, you know he's not sappy. Not overly emotional by any stretch. So I was curious to see what he would write. When he was finished, he handed me the paper; I read what he wrote and had tears in my eyes. I remember joking with him saying, "Just when I think you have no heart, you pull out something like this." We had a good chuckle over that. Jeff has always been a good charmer, and he pulled out the charm that day. 

This quilt is among my most precious possessions. It captures a time in our life before everything was turned upside down. It highlights our loving thoughts for our daughter in our own handwriting. Evie will forever have a piece of Jeff that we probably won't see in action again. A letter to a daughter from her father. 

Who knew that this simple, handwritten sentiment would have such deep, deep meaning just a couple years later. 

I'm so glad we have it.

Tuesday, May 27, 2014

Online Support Group

I recently found an online support group through Facebook called Wives & Girlfriends of Spinal Cord Injury (SCI) Survivors.

We post questions, share successes, vent frustrations, and provide encouraging feedback to one another. There's currently 142 members, and we're from all over the world. I've never met any of these women in person, and yet when I found the group, I felt instantly bonded with them.

We're all going through something that only we can truly understand.

Of course I have a lot of friends in my life who support me and my family in so many ways, and we are so grateful for that support. But being able to talk (or rather, write) to other women about details I wouldn't otherwise discuss with my other friends is so very helpful as I  learn how to navigate this new life. It shows me that I'm not alone. That I'm not the only one whose days and nights are filled with things like caregivers, insurance woes, transportation issues, pressure sores, clogged catheters, and medical supplies.

These women are real. Living lives that are both challenging and rewarding. They are exhausted by what they do, yet they keep on keeping on. They are a wealth of information ... a comfort to those living and dealing with SCI.

I am honored to be among them.

Saturday, May 24, 2014

Painting Toenails

Evie is a girly girl. She loves frills, pretty dresses, and princesses.

So when she asked Daddy if she could paint his toenails, and he said YES, she was beyond thrilled.

She picked out the closest color to blue she could find in our stash because she knows that's Daddy's favorite color (so thoughtful).

And while Jeff watched the UFC weigh-ins on his phone, Evie went to town painting his toenails. She jibbered away the whole time, telling him how pretty his toes looked. She was so proud of her finished work.

I do believe this act qualifies Jeff for "Dad of the Year."

Friday, May 23, 2014

What's In a Name?

Birds flyin' high, you know how I feel
Sun in the sky, you know how I feel
Breeze driftin' on by, you know how I feel
It's a new dawn, it's a new day, it's a new life for me.
Yeah, it's a new dawn, it's a new day, it's a new life for me, ooooooooh...
And I'm feelin' good.

Fish in the sea, you know how I feel
River runnin' free, you know how I feel
Blossom on the tree, you know how I feel
It's a new dawn, it's a new day, it's a new life for me,
And I'm feelin' good

Dragonfly out in the sun, you know what I mean, don't you know,
Butterflies all havin' fun, you know what I mean.
Sleep in peace when day is done: that's what I mean,
And this old world is a new world and a bold world for me...

Stars when you shine, you know how I feel
Scent of the pine, you know how I feel
Yeah, freedom is mine, and I know how I feel..
It's a new dawn, it's a new day, it's a new life for me
And I'm feelin'... good.

-- Feeling Good by Nina Simone

Jeff and I had our first dance at our wedding to this song.

As I was thinking of names for my new blog, it struck me how perfectly these lyrics fit. When I told Jeff the name I'd chosen, he knew immediately what I was referring to. Our song.

Jeff and I loved to dance. We met on a dance floor in Palm Springs. During our first year together, when Jeff still lived in San Diego, we went out dancing almost every weekend. At the annual holiday party for Jeff's former work, we were always the first ones on the dance floor. Even when we said to each other, "We probably won't dance this year," we always did.

I'm so grateful now that we did so much dancing in our "younger days." I think that we'll find ourselves on a dance floor together again at some point in the future, but it will be very different, of course. Just like so many things we've encountered over the past 10 months ... we can still do most of them; we just do them differently than before. The same, but different.

I'm grateful that I still have my husband to live this new dawn, new day, new life with. In so many ways, it's still the same. And in so many other ways, it's completely different. But in the end, even when we have some awful days, we get through them ...

... together. 

That's what I call ... feeling good.

Thursday, May 22, 2014

Meet Evie

This is Evie.

Our sweet, silly, sensitive 5-year-old daughter.
Her smile is a ray of sunshine.
She loves with a fierceness I've never seen.

She is the light of our lives. The best thing Jeff and I have ever done together.

She's adjusted remarkably well to our new life. She was at the beach the day of Jeff's accident. In fact, she saw it happen. She talks about it often, sometimes even telling complete strangers the events of that day.

She is what has kept us moving forward all this time.

She faces our new life without fear, without judgement, without the sadness of things in our life that will never be the way they used to be. We have learned so much from her outlook.

And she has learned so much over the past 10 months. She knows things that very few other 5 year olds know. And she does things even adults are scared of.

Example: here she is switching Daddy's vent tubes like a pro.

We are so proud of our girl. We know that she will face many challenges in this life as she gets older - having to field questions about why her Dad is different from other dads, having to educate her peers on what it means to have a dad with a spinal cord injury. And we hope that her caring nature and determined spirit will help her meet those challenges with success. She's done just fine so far.

Wednesday, May 21, 2014

First Time for Everything ...

So this is my very first blog post. I've been a blog stalker in the past, but never a poster. I'm a writer by nature (and profession), but I've never had anything in my life that I was so focused on, so passionate about that I felt was blog-worthy.

Until now.

I've created this blog to chronicle our new life - the life we were given after my husband, Jeff, sustained a spinal cord injury in July 2013. We've had so many people supporting us during this first difficult year, that I want a place where I can post info and keep everyone up to date on what's happening. They have cared enough to help us, so I feel they deserve to know how much their support has meant to us.

It's also a place for me to write my feelings as we travel through this unexpected, unplanned detour. It helps to pour out my thoughts and reflections; otherwise, they get bottled up inside, and that's just no good.

So thank you for taking the time to read about our journey. In the words of our sweet 5 year old, Evie, ...

Ready ... Steady ... GO!