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Authentic Love: An Open Letter to My Husband

To my heartthrob, love, partner, caretaker: Trevs. This open letter is for you and that enormous love of yours. XX

If I were asked to describe you to someone who had never met you, I could easily rattle off a list of my favorite qualities of yours. You’re witty, a great listener, vibrant and have that unmistakable BIG laugh – the kind that makes me feel like I could star in a hilarious comedy hit. (Of which I couldn’t, but thanks for the ego boost anyway). 😉

Or I could share one of the many stories of the authentic love you live out day to day. The kind of love that does something. That puts heartfelt sentiment into action.

Like the time my legs became too weak to walk and you carried me back to the car. Or the countless times you loaded up the wheelchair and took me with you on an outing or to an event. Where you likely could only half-enjoy the moment because you had my health and stamina on your mind.

My perspective of love has largely been shaped by the relationships I’ve known during my 29 years on this earth.

I saw love in my mother, who gave up her career to stay home and raise us kids.  In my father who worked long, hard hours to build a business and provide for his family.

Two brothers and a sister who still love me despite all the years of having an extra “mommy” bossing them around throughout childhood. (And all the firstborn children face-palmed at the memories of Oldest Sibling Syndrome. Younger siblings, we repent).

Family and friends who’ve rally around us to help raise funds for my Lyme treatment, as well as our recent move. At times they’ve brought meals, made grocery runs, or sat quietly with me on the couch when there haven’t been words to speak.

And then there’s you, my Trevs.

 

loving your chronically ill spouse
photo by Christina Patmore

Through the thickest of disease and the thinnest of resources and normality, you have faithfully cared for, protected, supported and LOVED me well.

Long before anything romantic happened between us, your friendship was steadfast and strong. God taught me much about true character through that friendship that grew between us.

Honesty, faith, and loyalty were qualities I saw clearly in your life.

You offered sound advice, a listening ear, a challenging voice when I needed one. Throughout our conversations you were genuine and real.

Two years into friendship and a whole bigger story later, I fell in love. Neither one of us could have known how deeply you would be tested through the coming years of loving me back.

You were there after I received my first diagnosis of multiple sclerosis. You saw the relief for an answer mixed with uncertainty as we sat with fear over the unknown. I’ll never forget you sharing the prayer you offered up that God would give us 50 years together. 

Less than a month later you proposed, your commitment unshaken by our new reality of illness. Five months later, we were married.

Then when my health suddenly fell apart a year into marriage, you were there for me.

When I’ve felt like I couldn’t take another minute of this illness, you have held me. You’ve reminded me I’m not fighting alone.

You felt the weight of the news that I had been misdiagnosed. It was heart-wrenching that we had lost so much time and that any hope of seeing improvement or healing felt impossibly distant. You sat with me when others rejoiced over our qualified glimmer of hope and all I could feel was the heaviness of the journey ahead.

You’ve been with me through so many moments of writhing pain, going in and out of consciousness, and far too many death scares. You were in the room when I flat-lined after a severe heart episode and were there to kiss me once they had my heart beating again.

Together, we have grieved the loss of normalcy and friendships, lost our unborn first child, and have fought so hard for our marriage.

Where many others would have walked away, you’re still here. Consistently offering compassion, support and care. I know it hasn’t been easy.

You deserve to know that second to God keeping my heart beating, you are the biggest reason I’m still here fighting. Your wisdom, level-headed nature, empathy, provision and unconditional love have been the best treatment I’ve received in these years of sickness.

You’ve reminded me I CAN do this because WE can do this.

love in chronic illness

I want to proclaim loud and strong how hard you’ve been fighting this battle, too.

I wish more people would see it that way…that they would see you for the warrior that you are. That more people on the outside would be sure to ask about your well-being when they ask you (or myself) about mine.

Because it’s you who’s here on the battleground with me. Every. Single. HARD. Day.

You help keep tabs on my symptoms, monitor my flares, and help me wade through pain attacks.

You pick up or prepare dinner when I don’t have the strength to stand, and will even tackle the dishes after.

You graciously help me in and out of the tub when I’m too weak to manage.

You grocery shop, pay the bills, help with laundry.

Beyond the emotional weight, your job description as caretaker seems never-ending, yet you never ever complain.

Your perspective on illness has been forcefully transformed through these years of seeing your wife’s declining health, I have no doubt.

You’ve known the feeling of helplessness as you try anything and everything to help me find relief, healing, or any amount of improvement in these moments of unrelenting pain.

When neurological symptoms began taking a more drastic toll on our conversations and our marriage, you worked through each moment with me and I know it took great effort (and still does). From drastic mood swings and memory loss, to severe sensitivities to sound, light, movement and touch that can suddenly send me into a tailspin without warning: you truly experience me at my worst.

I know this life with illness has weighed heavy on you. And while I’m so thankful that you’re here, my heart breaks that you’ve had to endure so much of this head-on.

You’ve advocated for me at every doctor’s visit, championed sleepless middle of the night ER trips, and challenged doctors to consider the effects of a disease they know little truth about. You have guarded your bride, and I’m forever grateful.

This is most definitely not the life we envisioned. Many dreams have been put on hold, new layers to my illness and healing continue to surface, we’ve moved, left a community and we are TIRED. We are worn.

But at the center of all the very real bitter parts of this, I’m thankful God has managed to keep some sweetness intact.

So much of that sweetness is found in your partnership. Your laughter. Humor. Kindness and warmth.

Your beacon of love and unfailing commitment.

You and all the other faithful partners out there, fighting alongside their sick loved ones, are some of the bravest people I know.

You’ve shown me, and others, what an authentic, unwavering love can look like. That love that can be lived out in every season and stage of life.

You’ve demonstrated a love that’s not merely based on the feel-goods or ideal circumstances that our culture tends to idolize.

In sickness and in health

Thank you for reminding us all that the fight for love, relationship and wellness is worth it.

Simply because we made a vow and I’m forever your lobster.

I’ll be ever thankful for YOU and your generous, authentic love.

YOU ARE MY FAVORITE.

XO,

Your Babah

 

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Finding purpose when life hits hard.

Unrefined Hope

Hello to you lovely readers from our new home in the beautiful southern Oregon. If you missed my husband’s guest post, let me catch you up in real time.

In the last 8 weeks we gave feet to [and sped up the timeline for] our plan of leaving Southern California, researched destinations, chose a new city, packed up our belongings, said some very hard goodbyes and made the trek to move our lives to Oregon. All in the midst of illness and some heavy grief.

We split the travel into two days, knowing my body couldn’t make it all in one without some dreadful aftermath. Tooka would like you to know that she enjoyed her view out the window and loved every rest stop she was allowed to explore/stake claim on. She slept most of the way and I wished with every ounce of my being I could sleep as well as dogs!

It’s hard to believe we have been here three weeks already. Moving when you are this sick – or married to someone this sick – is a huge feat and we had been hanging on for these weeks of rest. No more packing. No more moving prep discussions [or arguments].

Devoid of any concrete plans, we have enjoyed quiet days and short scenic drives together. We live in a valley, surrounded by beautiful foliage-covered hills and mountains, some we can see from our home.

It is quiet here, calm. Quite the difference from nightly Disneyland fireworks and the train that shared our street back in Anaheim. Both of which would literally shake our walls. 😉

My parents visited us this past weekend from Northern California to help us dress a few of our walls, reassemble the sauna and put together some Ikea magic (flat boxes that transform into tables – you know the drill). It was nice to have the extra help and to feel like our new house is beginning to look more like our home.

As I’m writing this, I am struggling with this sense that there may be expectations others have upon clicking to read this post.

Maybe to read that there’s some new great hope, excitement, or news that I’m about to share about my health or our situation. That moving to Oregon has already been this miracle shift for us and, whether or not I say so, one may assume things have improved significantly for us.

embracing authenticity in hardship

Our reality is pretty close to our weather lately: most days it’s cloudy with scattered showers and a few breaks of sunshine in between.

This past week was an exceptionally hard battle with my health in my fight for wellness. Symptoms and pain level were heavy and sleep was far from possible most nights.

Trev has been wading through the adjustment and grief of leaving his home and so many important relationships from the place he called home for most his life. We are resting because we need it.

As a whole, our culture has some learning to do in walking through the hard stuff with others. We aren’t good at sitting in the moment, truly feeling the weight of the load of our neighbor.

We like to speak fast and listen half-heartedly. We rush to point out the things we think are the “good parts,” the aspects of the trials we want the person facing hardship to focus on because otherwise it’s too uncomfortable.

While it may not have been intentional, I have at times been made to feel like my level of hope isn’t enough. It’s either insignificant or it’s “unseen.”

In the level of openness I’ve embraced in sharing my story, I’ve been met with some great moments of compassion and understanding. I’ve also been critiqued and given a list of “to-dos” and shiny phrases that should boost my hope and positivity meter.

I recently shared a post on my Instagram that I’m going to share again here. It’s something that I feel resonates with where our hearts are sitting in regards to hope:

navigating hope in disease

“I’ve been thinking a lot about hope over the last few months. What it looks like for me. How other people view it. The expectation and pull other people have for me to always “cling tight” to it…and in the way they think it should manifest in my life, in what I share, and how I present my honest struggles with Lyme.

My understanding of hope goes something like this…hope isn’t always bright and lively, vibrant with color and clarity. I’ve seen hope flicker in the quiet moments. The moments when we are all alone and hanging on through one more moment, one more year of singleness, another day at an awful job, one more seizure, or another piercing migraine.

My hope often feels like the pebbles on the right. Kind of gray, rounded, messy. Perhaps not full of light and life in the traditional sense, but they ground me. The real, calloused, unrefined hope I embrace may not make sense to you, and you may not be able to see it if you’re looking for your own version of it. But it’s there, softly blazing in the corner of my heart.

So today I’d like to say this: It’s okay if your hope isn’t a bonfire ablaze. Others may want to impose their understanding of hope on you, but your hope is important and beautiful. You wouldn’t still be here if you weren’t hanging on to that hope uniquely yours.

Keep embracing those ounces of hope. Whether they’re gray pebbles or bright blades of fresh green. They’re valuable and significant.”

We know we aren’t the only ones facing a hardship that has rocked us to our core. Life can hit us like a ton of bricks, without warning. In the moments where we feel weighed down by the weight of a heavy burden, our hope can look much different than many people expect…but it’s here.

Softly blazing. Flickering in the corner. Holding on.

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