Sometimes, It's Just Plain Heartbreaking

The absolute best part of starting this blog has been the relationships I've made with other wives to guys in wheelchairs. One of the closest relationships I've built is with Gentrie. Gentrie is married to Matt. He has been a quadriplegic for 20 years, and has recently been dealing with awful pain. Gentrie sent me this. It is heavy. It is raw. It is real.

So is her love and dedication to her husband. The pain is relentless. Her dedication meets it, every time.

These are the things we share. This is an intimate peek into our lives and the things we quad wives talk about.

And why we need each other. And why we need God.

It is not easy. Some days are bad. Really bad. Sure, there is joy. It's not always this tough for everyone. Every journey is different. Michael and I have it so easy compared to may others.

Our hearts break for them and with them. We fall asleep praying for them. But this raw, real, intimate stuff is the stuff of text messages, emails and Facebook messages that make us sisters.

Welcome to our world.

Click here to listen to Gentrie's heart.

I don't know what to do. My heart is breaking and grieving for all the people that suffer.

What do you as you watch a person suffer? Watch them writhe and sweat and cry out to God for mercy. What do you do as you sit comfortably in your own temporal dwelling of flesh and bone? Grimace and feel guilty. What do you do after you pray, you hold it together, champion, advocate and cheerlead your agonizing partner in this life? What do you do as you witness his tangible fear to keep living, intertwined with his ethereal fear of dying, fear of failure, fear of mediocrity? Its display is inescapable as you bear witness to it in the human you love and feel as much as your own being. 

Where do you go to cry and screech and wail and break and beg? Where do your dreams go? Your plans for 'us'? Your fantasies of holding hands? Sitting near each other on the same piece of furniture? Sleeping cold butt to cold butt in the same bed? Or even the same room. After the endless disappointing calls and pleads to doctor after doctor after doctor after doctor after doctor after doctor and doctor after doctor after doctor after administrator after therapist and parent, sister, father, best friend, lawyer, policy maker, receptionist, nurse, acupuncturist, colleague, stranger, neighbor and fellow caregiver? Where is the play book? The rule book? The script? The end? The reason? The answer?

Who tells you it gets better? It gets easier? It's temporary? That he will overcome? That there is a reason? A solution? A grand destiny? That there is help? 

Why is this beautiful soul shrouded in six failing feet two twisted inches, eighty seven startling pounds of physical flesh and deformed bone set on punishing him for an offense unknown? For an infinite time.

Why are there 185 doctor visits in 5 years? 1000s of pills? Unimaginable side effects? 10 failed surgeries and procedures? Unimaginable tears and desperation? Foul stench of burst colostomy bags in the middle of the night? Ruptured gushing cardiac picc lines on the brand new mattress? Blood pressure of 188/108 to a 30/50 dip? Why are there 20 years of crippling daily seizures of the bladder and teeterings of a stroke? Why are there ice pics of piercing pain from shoulder to finger tip? Why isn't there movement below the nips? This is inconvenient but mostly why people frown. Why are protective finger and toe nails fallen out? A result of shock? Why are there spasms that twist 37 years of life into a frozen fetal position every morning? Pressure sores, leg bags, catheters, snapped femurs...

cadaver bones, plates, screws, rods...

scoliosis, arthritis, osteoporosis, autonomic dysreflexia, malnourishment...

depression, tendonitis, neuropathy, colostomy...emergency surgery, endoscopy, sonogram,KUB...

hypogastric plexus anomaly...quadriplegia of the worst degree. 

Why do doctors and hospitals turn you away and look past you with down cast eyes and hurried glances? Why aren't my shoulders capable of handling this?

How is he still smiling? How is he still loving? How is he still going? How do I take the yoke and carry the burden and remain stoic?

When does he get his chance? When will it stop? When does he get to begin again? When will we stop asking why? When do we just accept it? When will my heart quit grieving and gripping me with paralyzing emotion? When will it be worse? 

 New normal? Silver lining? Am I culpable? Is this dying?

Is this preparation for our true lives? Is it true we are aliens here and only prisoners of our own devices? Waiting to discover what heaven is.

I cry softly at these tipping points. I cry violently when my body warrants it.

Questions don't matter in the midst of the splatter. He is fitfully asleep and I ponder our mutual disaster. 7,587 days and nights without privacy. Do you know what's stolen? Money, checks, medicine, prescriptions right from the pharmacy...

dignity, opportunity, normalcy...

child bearing and therefore child rearing, parking spots, girls that are hot...

always privacy, humanity, vehicles, clothes, wheelchairs, too...

all while in front of me.

Not being able to walk? That's inconvenient. It's everything else, that's disabling. Cobweb like nerves operated on.  What's left remaining  is paper thin muscle tissue and a spirit treaded upon. I'm gonna remind you one more time, that handicap spot? That's mine. The one you're taking. I will let you have it but it's a mistake you are making. Do it again, I'm not fakin', upon your return, it's me you're disgracing. 

We'll Get Together One of These Days

Tomorrow, after work, I'm going to a funeral.

Ashley's FB Profile Pic

The second funeral this year I never in a million years would have imagined I'd be going to.

My friend Ashley died unexpectedly, Sunday morning, while she was teaching youth at church.

I couldn't believe it when I first heard. She was just 31.

We had been meaning to get together.

Ashley and I weren't close friends, but we shared lots of fun high school memories, like cheerleading and Alpha. The stuff that binds you together as sisters, forever.

Recently, we stayed in touch via social media. Liking and sharing each other's pictures on Facebook, Twitter and Instagram. She followed my tweets during the election, and was a frequent commenter on the blog here.

She wanted Michael and I to come and share our story to her youth group. We talked most often about the Jesus Calling devotional, and blogs that we both loved - like the work of Lisa Jo Baker and Ann Voskamp, and youth ministry ideas for young girls.

Ashley loved Jesus. She followed him with her whole heart. I saw her life change and go down that path. Her handsome husband, her adorable kids - her son who looks just like her, and her daughter who looks just like Jamie.

I can't believe she is gone.

When we moved back to Virginia Beach, I was overwhelmed with wanting to get together with so many people. Ashley was one.

We'll get together one of these days, we'd say.

Now, we have to wait until Heaven.

I hate that.

But I know that Ashley's faith was strong. I know she is happy and she with Jesus, and that that kind of love and peace is even greater than young, beautiful, fulfilling life on this Earth.

I admit that my own faith is weak. I want life here to last as long as it can. I don't want pain. I don't want struggle. I don't want grief. I constantly beg God for mercy. I'm learning through this experience of her death, that we can lean into the faith of others, when our faith isn't mature enough. I've leaned into Ashley's faith so much this week.

When I first heard of her death on Sunday, I was so angry. Why did this happen? How could God let this happen?

There was a tiny seed of faith inside me that told me that even if her death brought one person to Jesus, Ashley would agree to it.

Now, here we are - days later - people from all parts of her life, connecting like we haven't ever done before, and what are we talking about?

JESUS.

I went to bed Sunday night, holding on to my husband extra tight. So thankful to have air in my lungs. The first few days were all about that.

Profound gratitude for this life.

Now, I feel a shift.

A challenge.

To center my life around what matters for eternity.

Ashley did.

In her life - and in her death - everything pointed to the Lord.

That's what He calls us to do.

That's the kind of life I want to lead.

Thank you, my dear sister, for pointing us in the way we should go.

Thank you for sharing what inspired you, with us.

I'll never forget your smile.

Your beauty. I tried to hate you for being so beautiful, but I couldn't. You were too sweet. And funny.

I'll really never forget your laugh.

I am sorry we didn't get together to catch up.

But I thank you for living your life in such a way that your funeral will be a beautiful celebration, and a reunion for all of us who were blessed enough to get a piece of you while you were here.

Just wait until you see that Baptist Church full of former Indian River High School Cheerleaders/Alpha Angels together like one giant pack. The stock on waterproof mascara will soar tomorrow morning.

Rest easy, Ashley.

To everyone that reads this -- Please join me in praying for Ashley's husband Jamie, her 7 year old son Mason, and her 4 year old daughter, Marley.

And all of her close friends. Friends way closer than me.

I just can't imagine what it would be like to go from normal happy life to a funeral, in less than a week.

I'd appreciate if you pass this page along to raise prayer awareness and money for this family, during this difficult time.

I Miss Blogging

So the only problem with going to the gym a lot and getting into shape... is that now, I never have any time to blog. Waaahhh.

I miss it. I miss you all.

Hopefully soon, I will figure out this juggle, and I'll be back. For now, feel free to connect on Facebook and Instagram. I'm still on there every 5 seconds.

Cheers.

Some Couples Face Heart-wrenching Suffering

As we share our story of approaching marriage where a spouse has a disability other couples reach out to us to encourage and ask questions. While so many of our days are really fine some are downright overwhelming. We've shared how one or both of us have broken down sobbing over our frustrations. Somehow one of us manages to buck up and be strong when the other is broken.

Our day-to-day struggles to balance caregiving, disability, work, and household responsibilities are something we will face for years to come. This is why we want to get it right. We want to figure out this dance so we can enjoy a long and happy marriage with kids, a house (with a maid), and a two-car garage where we park the cars we are both driving. It is all hopeful.

Too many couples don't have that hope. They face the dread of terminal or degenerative illness that robs them of their spouse and all of those hopes and dreams. Some find the inspiration to dig in together and fulfill those goals in the precious time left. But as the illness intensifies one spouse is eventually unable to carry on and the other managing.

If you've visited our website the past year you have noticed a large link that states "Pray for Tricia". It links to Confessions of a CF Husband, a blog where Nate Lawrenson shares about their life with his wife's Cystic Fibrosis. Just recently Tricia required a breathing machine because her lungs were failing. Doctors were days from this decision when a donor match was found. After a very rough year, Tricia is recovering with a new set of healthy lungs.

Our friends Derek and Krystina were a normal young couple when he was blown up by and Improvised Explosive Device in Afghanistan. Many of you prayed for them through his recovery. We all anticipated their upcoming marriage and his release from Walter Reed. Then he died suddenly one night.

Another couple has been battling breast cancer. Brian and Kelli were a young, beautiful couple with the family to match. Friends and family have surrounded them with love and support. But over the past few weeks cancer took its awful toll. Yesterday she passed away with her family nearby.

People wonder how we make it as a caregiver/disabled couple. It is like any marriage: we cherish each other.

We all hold out hope our marriage will be long and happy. Marriage is still sacred. To love a spouse through suffering and hardship is challenging. To lose a spouse is tragic. To receive a few more years together is a gift.

Fish Tacos to the Rescue

What to do when one has too much salmon?

We faced this problem last week. While we love our dinners from fresh20 we always have too much. It is great for leftovers. And most of the meals reuse different components. But last week's recipe called for two pounds of fresh salmon. We couldn't be stuck with too little salmon!

So after the salmon dinner was cooked it was obvious the two of us couldn't finish all of the salmon. Even with the second time around we had too much. 

There's no way we're throwing away that expensive fresh caught salmon. So we thought about something easy and different -- fish tacos.

While tacos are usually made with white fish, salmon made sense. Cooked in some Old Bay and topped with fresh pico de gallo on toasted corn tortillas, the salmon made for wonderful fish tacos!

On Balancing Working and Caregiving

A few weeks ago, I had the opportunity to participate in a video chat with Caregiving.com about working and caregiving.

First of all, let me say this.

Someone, I think it was Sib, who I like to call my big quad-wife sister, said that this life that we lead really can't be "balanced."

It has to be "juggled."

Which I think is a much more accurate term, because something is always up in the air! And that thing that's in the air - whether it's work, or home, or caregiving, is at one point or another, in the air - a.k.a. out of your control.

I am, by nature, a workaholic. I think that makes my juggle more of a struggle than it needs to be.

I find that organization and systems are KEY.

Here's the video of the chat, if you'd like to see it.
You can read more about everyone who participated in it, here. Be advised we did have some technical challenges at the beginning, but we ultimately pulled it together.



In my advice, I mentioned two online services that help me juggle.

One is Stitch Fix.

The other is The Fresh 20.

Disclosure: This post contains affiliate links, which means if you click on them, and buy something, that it will in some way benefit me.

CrossFit is Changing my Life

I can't remember if I've written here about how I gained 30 pounds in two years, but I did.

I gained 30 pounds in 2 years.

I blame the campaign. I traveled so much, and ate a lot of Boston Creams and a ton of 2:00 a.m. Taco Bell, and well, I didn't work out.

Like, pretty much, ever.

And my thighs and my stomach turned into tubes of biscuit dough.
It was horrible.
I felt terrible about it, but just didn't have the energy to do anything about it.

So, I just pretended like I was okay with it. And ate some Swiss Cake Rolls.

Then, when I saw a few pictures of myself, and especially videos of just how bad it really was, I thought about doing something about it.

Then we moved.
And I started a new job, a new overnight schedule, and I wrote an eBook.
Then we were on a TV show.
And I just got fatter and fatter.
The worst part was losing my shape.

I've been chubby before, but it was different. At least I was able to maintain my shape. I'm really short, so any weight shows up quickly. But, like I said, I was always able to maintain my shape. I have a lot of muscle tone, naturally. I'm a little power house! :)

But this time, this fatness was out of control.
I saw and felt myself getting round.
Getting fat in my tummy. I'm not naturally fat there. I'm a butt and thighs kind of girl.

Anyway - about a month ago, my sister told me about a CrossFit Groupon. We bought it, and I was so scared to death to try it. I was afraid I would look like a Biggest Loser contestant on day one.

But we went.
And I didn't die that first day.
Or the second day.
And I'm still alive!

It's been about a month.
And my scale is broken (I didn't do it, the battery died) but I actually think that's okay, because I'd rather measure my loss in inches anyway.

I've lost four inches in my waist in a month, y'all!

The best part of all - I'm addicted.
Other CrossFitters told me this would happen.
I was afraid it wouldn't happen to me.
How could I become addicted to painful workouts?

It happened.
And I'm so glad.

It's really fun to watch and feel my body go back to where it's supposed to be. I love slipping on jeans that actually fit. And the best part of all is that Michael is noticing it, and using words like "tiny" and "slim" to describe me. Bless his heart. That's definitely a stretch, but it's cute how much he loves me.

And for the record - he never stopped loving me, even in the height of my fatness.
He's a good one.

For the record... my CrossFit hero? My little brother. That's him, there. Dead lifting 475 lbs. I want my legs to look like that.

Nature Walks with our Puggle

Brokaw loves our walks outdoors. Since spring we have enjoyed the other animals in our neighborhood. His beagle instinct takes over sometimes and he can't help chasing them down. When they're far enough away he just watches. These geese were not happy to see us and squeaked to let us know. Brokaw was puzzled at the noise they made.



This mallard family was in our retention pond a few days ago. We saw three or four babies with them. Mamma Mallard had her eye on us. Brokaw wanted to get close, but I told him not to harass the poor babies.



Look carefully and you'll see a couple of bunnies in this photo. Don't feel bad if you don't because Brokaw didn't see them either. He usually sees the rabbits at night when sensible people are inside and they think they are safe. Silly rabbits. He gets excited when they bounce by.

Joni and Ken: An Untold Love Story (Review & GIVEAWAY)

Last Saturday morning, before the sun came up, I finished a book.

Not just any book.

A book that I feel one day, I'll be able to write myself, somewhat.

I finished this book with tears streaming down my face.
Two minutes after I finished it, I crawled back into the darkness and pile of pillows and blankets that is our king sized bed, and snuggled into my favorite place in the world.

Michael's right shoulder.

I shed a couple of tears on my favorite quad's chest.

You see, it took me weeks to finish this book.
Because I had to keep putting it down.
Some parts of it were just too real, too painful for me to read.

Like this, about Ken adjusting to living and loving someone with a disability:

"It took a while to separate himself emotionally from what happened in the bathroom, but he was able to shake it off. With God's help, he believed he was up to the task. She believed he was too. But it didn't take away the fear."

When Joni and Ken met and fell in love, she was already paralyzed. Living in a wheelchair and all of that was already a part of her "normal" life. Ken was swept off his feet by Joni. I can't blame him. She is breathtakingly beautiful, and full of God's grace. Who in their right mind, with the chance, wouldn't be swept away?

I was swept away with my quad, too.
I remember those days of simultaneously falling in love, and swimming in fear.
But the sweetest part of it was being able to trust God, and trust Michael.

Joni and Ken: An Untold Love Story takes you through their journey of meeting and falling in love, and getting married, and then, the part that made me cry.

When they fell into the routine of everyday living/caregiving/working/marriage and keeping a house, and before they knew it...

"It was like climbing a mountain where you took one step ahead and slid back two; instead of making progress, you felt like you were going backward. No matter how diligently you worked at it, you were never 'done.'

Sometimes he found himself asking, How did I get here? Why is everything so hard? Why don't things ever get better?"

Joni and Ken have had additional and different struggles than we've had. Joni has had to deal with chronic pain, and breast cancer. Ken had to learn what it's like to be married to a famous person.

But, there is so much that we relate to, and so much to learn from this treasure of a book. I encourage anyone who is married to read it, especially if you juggle a disability in your marriage.

My favorite line of the whole book? It's from the beginning, when they were out on a boat, just the two of them, during their dating days.

"Ken spoke up. 'It could work, you know.'"

Joni and Ken are 30 years into their beautiful marriage. That's almost 10 times as into this as we are. We're thankful to have them as great role models to look up to. I am personally grateful that they decided to peel the veil back, and let us in. I'm also grateful for their ministry, Joni and Friends, which we've both been blessed by, and had the opportunity to serve.

We're so blessed that we've been able to meet them and get to know them.

I'd like to bless one of you with a copy of this book. Please share this blog post on Facebook, and you'll be entered to win. I'll randomly pick a winner, and contact you via Facebook to let you know you've won by Sunday, May 12th.

You can buy the book here.

What It's Like to be on a Reality Show

This past weekend, our episode of "I'm Married to A..." was on VH1.

You can watch the full episode here:

I'm Married To A... | Quadriplegic & Dominatrix

As I wrote about before, the crew was here just as we were first moving to Virginia Beach, and as I started my new job.

People have asked me if we were nervous to share our story. The answer? Not really. We share our story all the time here on the blog, and while no, we don't write about our sex life or about trying to have a baby, you had to know by now that both of those scenarios exist in our life.

By the way, there's no great baby update yet. Honestly, we haven't been trying, yet. Our life right now is consumed with my job.

So, that baby - while already incredibly loved, and covered by prayers of people all over the world - is on hold, for now.

You can read more of an update on VH1's blog. They interviewed us after the episode aired this week.

I want to tell you what the last week has been like.

It has been overwhelming, in the best way possible.

We have both received hundreds of social media messages and comments, emails and text messages from people in our lives (some that we haven't heard from in 20+ years) and some heartfelt greetings from complete strangers.

It's been hard to keep up.

But - it's all been so encouraging, and such a blessing.

We did not put our story out there for any kind of recognition. Definitely not for pity.

Knowing that our story, and our openness has given some people hope - that real love exists, that tough circumstances are worth pushing through, and that even a show that features a dominatrix can also show your faith, has been really fun.

We already knew that the love ("Love Like This") that we share is something special. It's interesting for so many other people to see it now, too. We want that for every marriage, every relationship.

Now - obviously, our love is not pure and perfect and devoid of me acting like a you-know-what during "shark week," and Michael sometimes being annoyed and disappointed. We face marriage issues like money and jealousy and selfishness, just like anyone else.

Don't put us up on a pedastal. Please. We'll fall right off.

But thank you for taking the time to encourage us, to lift us up, and to pray for us. It means a lot.

And to the crew, and the team at VH1 and everyone involved with the casting and production of the show, thank you for giving us a chance.

I'll never forget the day I came home from work, and there were lights and cameras all over my house.

I'll never forget wearing a microphone, and trying to come up with enough clothes that actually fit, for the wardrobe changes, that would work with wearing said microphone. And setting camera shots, and being on the other side of the camera - which, by the way - I was surprisingly comfortable with.

I'll never forget these nice people, Evie, Mary, Jenn, MJ, Brian, Orrin, and Andy - who took Brokaw on a million walks so you wouldn't hear a barking or snoring Puggle in the background of every shot.

I'll never forget watching ourselves on our own TV in our living room where everything was taped. It was the strangest thing, ever.

One day, we'll look back at this experience and chuckle, "remember that time we were on a reality show?"

But - I know this for sure, now. We won't ever regret it.

Thanks again to everyone who made this possible for us.

By the way - here are some more clips from the show.

Our love story:

I'm Married To A...

Our morning routine:

I'm Married To A...

Celebrating good news:

I'm Married To A...

And, finally, building a wheelchair ramp - which has to be the nicest we've ever worked together.

I'm Married To A...