The Anchor

A good friend of mine recently told me about a personality test she'd taken. It's designed by a woman named Sally Hogshead (isn't that a great name?!) It's called the Fascination Advantage and you answer a series of questions to determine what traits are dominant in how the world perceives you. Then you are assigned an archetype - a symbol of your personality or dominant traits.

So I decided to take the test.

Whenever I do exercises like this I always I hope I get words like ... intriguing ... mysterious ... or ... passionate to describe me.

Not. Even. Close.

After answering the questions and waiting as a little graphic on my computer screen whirled around, calculating my inner strengths, I see my archetype in bold, blue letters appear ...

The Anchor

I'm a huge chunk of metal that reeks of seawater? Not exciting to say the least.

But not surprising either. As I read the traits of the anchor, I see that they are really and truly 100% accurate as to who I am - and apparently how others see me.

Protective
Purposeful
Analytical
Calm and
Steady

I think I've probably always embodied these traits, but I can say they are even more apparent in me since Jeff's accident. I've certainly become extremely protective of my family. I protect them in the best ways I know how - by making smart, purposeful decisions. By analyzing all angles of a situation. By trying my best to stay calm under extremely stressful circumstances. And by pushing forward in a steady, thoughtful manner.

My god it's the hardest thing I've ever done in my life.

I have times, especially at night when I'm trying to wind down, when I can't help but freak out in my mind a little. I start thinking things like "What if something else bad happens? What if something happens to me and I can't take care of my family?" I literally have to tell myself out loud to stop thinking like that. I'm practical enough to know that's no way to live - in fear of fear. But sometimes I can't help it.

I just want to keep my family safe. Who doesn't?

My family has had a rough year, no doubt. We were smooth sailing for so long, then one wave - literally - altered our course forever. Getting back out onto that sea of life has been scary. But set sail again, we must.

My family is my precious cargo, and it's my job to keep them afloat, not adrift.

Afterall ...

I am the anchor.

Me and my "precious cargo."

Walking ... The Overrated Pastime

We never heard the words Jeff will never walk again the entire time he was in the hospital.

I think there's two reasons for this.

The first is because I never asked. Even when the attending doctor in the ER came out to tell me the extent of Jeff's injury, something prevented me from asking that specific question. It was probably fear of the answer.

The second, I think, is because Jeff's injury is so much more than not just being able to walk. And no doctor was going to go down the list of what Jeff would have to regain in order to accomplish that. We figured that out on our own. 

There's so much that would need to heal and "wake up" before Jeff could ever think of walking again. First and foremost, he would have to get off the ventilator by regaining sensation and control over his diaphragm. Then he would have to move his arms. Then his hands and fingers. Then gain control of his torso. Then get back his bladder and bowel function. Then his hips, thighs, knees, and feet. Finally he'd have to build up an enormous amount of lost muscle mass to take ... one ... step. 

I'm not talking about the kind of step paralyzed people take when they are hooked up to "walking machines" in rehab. Those certainly are highly advanced therapeutic devices, and have done a lot to help people's bodies move in ways they never dreamed would happen again.

I'm talking about the kind of step he can feel. The kind of walking where his body just does it automatically, without thinking. The kind of walking most people do effortlessly each day.

Please don't think I'm pessimistic about the chance of a recovery for Jeff. It's just that with everything we've been through, we have to face reality head on. The chances are very slim that Jeff will ever walk again. We will never lose hope, but in order to live day-to-day, hour-by-hour with this injury, we also have to remain realistic.

Besides, walking is overrated, right? Jeff's wheelchair is so advanced that it offers him a tremendous amount of freedom he wouldn't otherwise have. And at this point, walking isn't even on our radar. If it presents itself as a real opportunity down the line, we will gladly accept it. But for now, Jeff's main goals remain to try to wean off the vent, and try to, one day, regain some arm movement.

I've heard Jeff say multiple times that he would give up his legs for the chance to be able to move one of his arms. If he could strike a magical deal, he would have his legs physically removed from his body, giving up all hope of ever walking again, to have the use of just ... one ... arm. 

So I could touch my family again, he told me. 

I would take that over walking any day.

Evie and Daddy "walking" together at the park.

Our New Ride

Yesterday we bought a van.

A modified van that Jeff can drive into through the automatic ramp that opens out the back door.

The van is awesome.

It's something we've known we wanted for several months. And it COULD NOT have happened without the generosity of others.

Shortly after Jeff's injury, our friends and family began fundraising for us. While I was grief-stricken over the accident, trying to make sense of the chaos my family had been thrown into, others were rallying and donating to our cause. They knew we were going to need help financially if we were going to make it through this.

We continue to be so thankful and overwhelmed in a good way by the generosity of others. Even though this horrible thing has happened to our family, in the wake of it, we have experienced an influx of giving from friends, family, and perfect strangers. It has restored our faith in humanity. Truly.

Here it is. Our new-to-us 2011 Toyota Sienna.

It's a pretty sweet ride.

We took it for a drive around the block today.

Don't worry - we were still in the driveway here.

Evie is super excited that she gets to sit next to Daddy now in the car!

I'll tell you a secret ...

Jeff has always wanted a mini van.

I'm not kidding.

When we leased my Hyundai Santa Fe early last year, he tried to talk me into getting a mini van. And this wasn't his first attempt.

I couldn't justify it seeing as that we only have one kid and don't travel all that much.

I used to catch him looking at mini van interiors online, and he would show me how all the seats would re-configure so you could haul bikes, a wagon, plants from Home Depot ... anything really. Plus he always said mini vans were "undercover" and "fast as hell."

Oh how I wish he could drive this.

Instead, he'll have to settle for the role of backseat driver.

Yesterday evening as we were looking at our new van in our driveway, I said to him, "Here you go, Daddy. You finally got your mini van."

He wheeled his chair around to go back up the path into the house, and said, "Yep. One way or another."

Friends

We are so thankful for our friends. Especially the friends who can see past the wheelchair, the tubes, and the mountain of medical supplies in our home. The friends who still treat us like we're "normal."

We had some of those friends over this weekend. 

Meet the Flynns.

They joined us for a bbq and swimming fun on Saturday.

Here we are at the end of the day with tired, water-logged kids.

Chad is one of Jeff's very best friends. They've known each other since high school. So our families have been through things together like dating years, weddings, and having kids.

The Flynn family was with us at the beach the day of Jeff's accident. Mindy helped to keep Evie safe and preoccupied as emergency responders swarmed the scene. Chad drove my car with Evie in the backseat to the hospital while I rode in the ambulance with Jeff. And later, Chad and I were in the tiny ICU room with Jeff after he was stabilized and sedated, both numb with shock over what had just happened to our best friend/husband. 

It's incidents like this that bond people for life.

The Flynns have helped us in so many ways on this journey. They have organized fundraisers for us and helped spread the word about our story to others. They helped us pack up our lives from the home we lived in at the time of Jeff's accident, and move us to a new, temporary home. But most importantly, they have remained our true friends. They are raising their children as compassionate individuals who see us, extended members of their family, as normal people. To their children, Connor and Camille, Jeff's wheelchair  is just a part of who he is ... a pretty cool part. Connor got his first ride on Uncle Jeff's chair this visit. :)

We had so much fun playing and making memories this weekend. It's still difficult for Jeff to observe from the sidelines as we do things together like go swimming, play in the backyard, and bbq. I imagine it always will be for him. It breaks my heart to watch him watch us instead of actively participate.

But what it comes down to is we have lifelong friends in this family who won't let a disability stop them from having fun with us. 

We love you, Flynns.

Mindy and little Camille.

Connor and Chad having fun.

Evie soars with Uncle Chad.

.

I love how Evie photobombed this family moment!

Happy Father's Day

Jeff is an amazing dad.

He loves Evie with his whole heart.

These pictures speak for themselves.

Happy Father's Day to my incredible husband. Evie is lucky to have you as her Dad.

Evie's Father's Day project from school (2014)

 

 

Analyze This

Dreams.

I have two different kinds of dreams. One where Jeff is in a wheelchair, and one where he is able-bodied. It's the dreams where Jeff is still able to walk, still able to wrap his arms around me that are the hard ones to wake up from.

But this post isn't about that kind of dream. A couple weeks ago I had a dream that has stuck with me. One where the images were so vivid, if I were an artist, I could draw the whole thing perfectly.

This is a dream for the textbooks. The psychology textbooks that arm you with tools to decipher the deeper meanings behind your dreams. Get your secret decoder ring ready ...

In my dream, Jeff was in his power wheelchair, and I was walking next to him. We were attending some kind of retreat where we were going to meet others in our situation. I remember thinking the chosen location for this retreat was odd. It was very hilly. Many of the streets were paved with cobblestones. Not an ideal place for people in wheelchairs.

Jeff and I were at the top of a high hill, and were making our way down to the bottom to our destination. Jeff's chair began to swerve as it headed down the hill. It rocked back and forth as he tried to regain control of it. The chair turned sideways, and it looked as if he would overturn and tumble down the hill. I saw his face as the chair was turning toward me. He was crying - terrified. 

I ran ahead of him as his chair spun, and he was now facing the top of the hill but was moving backward toward the bottom. I dug my feet into the ground and used every ounce of strength I had to keep Jeff's chair from flying backward down the hill. The muscles in my arms and legs burned as the weight of the chair pushed against them. I remember thinking "This chair weighs 400 pounds. How is it not rolling over me and crushing me? How am I able to hold it up?" 

I kept walking backward, slowly, steadily, knowing we had a long way to go till we reached the bottom. My legs were getting weaker and my hand grip was slipping. Just as I was about to give in and let the chair flatten me, I realized we were on level ground. We made it to the bottom safely.

Then I woke up.

Analyze that.

The 400-pound chair.

The Hum of the Vent

The ventilator.

We have a love/hate relationship with the vent.

We hate that Jeff has to be on it. It's cumbersome. It's unsightly. Caregivers are scared to death of it. So are some of our friends.

We love it because without it, Jeff wouldn't be alive.

We are often asked if Jeff will always be on the vent. The truth is ... we don't know. We hope that, in time, he can be weaned. We've heard stories of people getting off the vent as many as 3-4 years after their accident. We also know people who will be on vents for the rest of their lives. Jeff might be one of those people.

We're prepared to live with the vent forever, if we have to.

I've become so accustomed to the sounds of the vent. Jeff's been on it since he arrived at the hospital just after the accident.

My body is trained to immediately respond to the alarm. Whenever the alarm goes off, my body shoots up from whatever position I'm in and starts moving toward Jeff and the vent. It's as if my body moves faster than my brain can process what's going on.

One evening, while putting Evie to bed, she and I were lying down telling stories in the dark, and the vent began alarming. We both bolted upright. I hurried out of the room as she called, "Run, Mama!"

When I sleep, the vent is literally 24 inches from my head. So each night I am lulled to sleep by the rhythmic "in and out" of the vent. It's actually quite soothing. And I can tell when Jeff starts to wake up from a deep sleep because the rhythm changes. The vent is so sensitive that it allows Jeff to initiate a breath. When he inhales through his nose, the vent pushes a breath into his lungs. Jeff has the ability to breathe on his own, but only for a limited time until his lungs and diaphragm muscle become tired. His record right now is about 30 minutes off the vent. But at the end of that time, he says he feels like he just got done with a jog.

I am thankful for the ventilator that breathes life into my husband. Even though it is cumbersome and unsightly, it's portable enough to allow him to move freely around our house, both inside and out. Ventilators haven't always been so portable. Even the vent that Christopher Reeve had was the size of a small window air conditioner. Jeff's is about the size of a laptop computer - just a little thicker.

Dear Vent:

We've decided we'll keep you around as long as you're needed. We would love to one day bid you farewell. But if we can't, that's okay too. We'll work around you.

With Gratitude,

The Sachs Family

Meet Nana

Or as we call her around our house ... Nana Banana.

This is my mom, Judy. I couldn't do what I do without her.

When Jeff's accident occurred in July last year, my mom was in Ohio on her annual summer vacation visiting family. She wasn't scheduled to come home until September.

She came home the next day.

She knew I needed her, and she dropped everything to come help us.

I remember when she arrived at the hospital. We went out in the hall together, and I broke down. It was the first time I let myself fall apart after the accident. I was waiting for my mom to be there to comfort me. To wrap her arms around me and cry together. There is truly nothing in this world like a mother's love.

In the months following the accident, when I had to spend so much time by Jeff's side in the hospital, my mom became the primary caregiver for Evie. Since the day Evie was born, my mom has been a major figure in her life. But since the accident, she and Evie have become even closer. They really are two peas in a pod. They have such a close, strong bond with one another.

In January of this year, we moved into our current house - a one story home with hardwood floors, perfect for Jeff to maneuver around in his wheelchair. A month later, my mom moved in with us. She is helping us along this journey in so many ways.

She gets Evie ready for school every morning. This includes fixing her breakfast, doing her hair, getting her dressed, and taking her to school. She also picks her up in the afternoon and spends quality time with her every day.

She helps me in the heavy-lifting aspect of caring for Jeff. Together we've developed a routine for getting Jeff out of the bed and into his chair (and back) in record time. I never imagined that my 5-foot tall mother and I would be hoisting around my nearly 200-lb husband, but that's exactly what we do. Several times a day.

My mom is a natural caregiver, and it shows. Seven years ago, my mom was the caregiver for her mother when my Grandma was in her final days. Mom was by her side doing things no one else could do. Things other people were afraid to do - like administer medication and clean up yucky bodily fluids. She was a great comfort to my Grandma. I admired my mom so much during that time, and I hoped that one day I would be able to comfort and care for her with the same grace and strength she showed toward her own mother.

I never, in a million years, expected I would have to care for my husband before caring for my mom.

But at least I am able to draw on her experience. And in a crazy twist of fate, have her by my side as I do my best to care for Jeff.

This lady is pretty amazing.

We love her so much.

Nerve Pain

Nerve pain sucks. It often comes on suddenly for Jeff, and there's nothing he or I can do to stop it. He just has to wait it out.

Nerve pain is different from physical pain. Since Jeff only has normal sensation in his head, face, neck, and upper shoulders, that's where he can feel physical pain. And that pain is usually in his neck. And it's chronic. Always there. Some days it's better than others. Sometimes massage or stretching helps. Sometimes medication helps. Sometimes nothing helps.

Nerve pain is a different beast altogether. And it's hard to accurately describe. Jeff doesn't have sensation below his shoulders, but there are times when he can "feel" his hands. That may sound like a good thing, but when nerve pain is behind it, it's really not. Jeff says it sometimes feels like his hands are submerged in ice. So cold it hurts.

Sometimes his whole body is affected by nerve pain, and he feels so incredibly cold. He once joked to me saying he felt like Han Solo frozen in carbonite (gotta love his sense of humor). But nerve pain is no joke. He takes medication for it, but we don't think it helps.

Sometimes the only thing that helps is distraction.

Last night when we got him back in bed, his nerve pain was intense. So we decided to have a little snuggle time with Evie as a treat. My night duties to get Jeff ready for bed take 2-3 hours to complete, so Evie is usually long asleep by the time I get my bed out and put it next to Jeff's. (I sleep on an inflatable mattress next to Jeff's bed.) But last night we changed up the routine a bit and put the bed out early. Evie made sure Daddy was covered with his Charger blanket, then climbed into my bed, and pulled up the covers. Then she taught us a song she learned earlier in the week at her school:

Two legs in the front
Two legs in the back
A cow has four legs
I know that!
But only one tail...Moo Moo

We sang several verses changing the animal each time.

Here we are enjoying some nighttime singing:

(Photos courtesy of Nana)

The singing helped distract Jeff from the nerve pain, but it didn't really go away until he fell asleep. Even then, he still felt "off" the next morning.

But it's nice to know that we have a little ray of sunshine to distract us from life's painful times.

Our Evie has been the best medicine for us.

Homework with Daddy

Every week, Evie has four activities to complete at home for her homework. Yes, she has homework. Yes, she's in pre-school. And yes, I love it.

I know a lot of people complain about having kids do homework at such a young age (I hear kindergarten homework is crazy - as in there's-so-much-of-it), but the work she has now is just perfect for her age. It always involves doing something fun like counting all the shoes in the house and writing down the number. Or thinking of three words that rhyme with "toy." Fun stuff we can all do together.

Each week the focus is on a new letter. This week's letter is ...

W

One of her activities reads, "With a parent, ride on something that has wheels."

Hmmmm. I wonder what that could be?  I read the activity out loud for Evie to ponder, and Jeff did a circle in his chair to catch her attention.

We could see the moment it clicked ... "Daddy's WHEELCHAIR!"

Like an expert, she climbed up into Jeff's lap, turned around to face forward, and held on to his leg guards. You could tell she'd done this before.

He drove her all around the living room and kitchen. She loves to direct him where to go. Sometimes they venture all the way back to her bedroom. One time they got stuck in the hall and I had to help them back up. Sometimes she pretends he drives the ice cream truck, and she delivers the ice cream by throwing it out the window as they drive by.

I love that this was an activity that only Jeff could complete with her.

It made him happy.

It made her happy.

That always makes me happy.

Later that night, I walked by Jeff's room to find Evie on his bed snuggling with him. I can usually get them to smile if I promise it's the last picture of the evening. This is what I got.