Saturday, June 29, 2013

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. 

Thursday, June 13, 2013

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?


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.

Tuesday, June 11, 2013

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.