Marriage in Chronic Illness: Love in Action

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). ūüėČ

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 ‚Äúmommy‚ÄĚ 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‚Äôt 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‚Äôve reminded me I‚Äôm 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‚Äôm 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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15 comments

  1. Sharon Gilmore says:

    Not everyone finds this kind of Love, I did with you grandpa and so very glad that you have it with Trev hope your move has helped some you both are special

  2. Jennifer says:

    Thank you for sharing this beautiful letter to your hubby! So many words you spoke mimic exactly what I’d say to my husband! You’ve inspired me to write one to my hubby! I could almost copy & paste it! Gentle hugs from Texas!

    • Kami says:

      Aw, thank you Jennifer! I’m so glad it could inspire you to write one of your own. I’m sure your husband loved it! Sending gentle hugs back from Oregon! XO

  3. Michelle says:

    What a beautiful tribute to your husband and an acknowledgment of his care and support. Like you, I’m blessed to have a wonderful, caring and supportive husband. i don’t know how I would do this without him.

    • Kami says:

      It’s such a gift to have their support! I’m so glad you have Justin. I’ve learned so much from the love of my guy in these rough years. <3

    • Kami says:

      Thank you, Shelley. I feel it’s so important they know. I can easily become consumed with my own battle, but know he is right here with me and it’s not easy for them either.

  4. Lori Geurin says:

    This is beautiful, Kami!

    It’s good to be reminded of the special people in our lives who go through the tough times and difficulties of Lyme with us.

    I’m happy you have your hubby. My husband, David, has been my rock through it all.

    I realize not everyone has this kind of support and that makes me all the more thankful for him.

    Thanks for sharing your heart.

    XO

    • Kami says:

      Thanks so much for reading and sharing your thoughts, Lori! Yes I really do agree that there’s so much good in remembering those who walk through this life with us. Such a gift! I’m really glad you have your husband’s support and care, too. Knowing that there are others going through this alone helps me remember just how fortunate I am. Sending healing hugs your way! Xo

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