K-T Syndrome a Shared Road Traveled

Many of my younger K-T companions wonder what their future brings. It brings you hope. It brings you love. It brings you challenges. It brings you lovely people who gladly travel with you through remarkable journeys. It brings you friends for life. Bear with me as I explain. Dawne Lee, this remarkable lady, has stood by my side since we met. Her K-T story like most life stories is best told in person, but then to wait to do so would mean you, my extended family, wouldn’t hear it. Her K-T story is a shared story.

I was 18, Dawne Leslie Wood 17, when we met. We married at 19 and 18, at what most think of as an early age, and we have unwittingly traveled the K-T road together ever since. While a completely distinct story in and of itself, this journey was quite unexpected as I was certain I would not pursue marriage until after I was 30 years old. In no way is this a patent endorsement of early marriage, although I wouldn’t change one thing about my youth, our storybook meeting, or our decision to marry, not only early in life, but early in our relationship.

Every life has its rhythm and the music it generates is as unique as any song written across generations. There are moments when we look to favorite songs and wonder is this my story. Maybe we take inspiration and set about to travel a like journey. Other times we sense others are walking our road. In the end, we write our own story and revel in how great it is that were it a musical score it surely would be a different, vibrant song; and beautifully ours. With that in mind , this is only one K- T story among many and is by any account also only one love story.

Today, it is impossible to separate my feelings from Dawne’s. It is impossible to separate my joy and pain from hers. I make no secret that I’m 58 years old. The math is simple, that’s 40 years of listening to laughs, but yes also moans and groans. That’s 39 years doing so as we attempt to sleep at night. That’s hours and hours of leg massages hoping these will bring restive sleep, so many times without a thank you or even a glancing smile of gratitude because sleep came to me before Dawne finished.

For just over 20 years, the early years, Dawne dealt with my random yet constant periods of bed rest to cure stasis ulcers, never to forget her unflinching and quiet care for our children while having this big kid down for the count. After about a year of marriage Dawne worked the next 4 years while I went to college. She provided me with tons of encouragement that many seasoned marriages struggle with – we were newlyweds and she conspired with my father to move into his home and insist that I attend school without the distraction of work. Dawne knew me better than myself and she laid the foundation that forever is the confidence I rely on today. There is virtually nothing I won’t try to learn because Dawne’s faith and support tore down a barrier built by my educators from K through 12. Yet again, another story.

The first 20 years I speak to here were magical, yet it is the next 20 years that shine an ever brighter light on unwavering and unconditional love. Dawne’s first 20 with me were a mystery tour. My medical problems were constant, but from causes unknown. When the doctor called her in as his moral support – she came without hesitation. Diagnosis Permanent Disability, cause unknown, life prescription 20 hours recumbent and 4 hours ambulatory were his words. Without blinking an eye Dawne turned to me and said, “You did your 20 years, now it’s my turn.” Without breaking confidences I must say Dawne misses important considerations to this day when she discounts these earlier years and her heroic work to once again provide encouragement and support at a time in my life when I needed it.

As the story goes, we’re in the first 5 years of our second 20 and the diagnosis changes from cause unknown to Klippel-Trenaunay Syndrome. The prescription changes for a substantial duration to remain recumbent the entire day except for potty breaks. You get the picture. Our children are now middle school age, active beyond active. Dawne is re-entering the job market to assume the primary bread winner role. Me, I’m knocked out on pain medications, unable to walk the staircase to our 2nd story bedroom, and fearful I will be unable to walk at all. The world is on Dawne’s shoulders. There is so much that needs saying, but I leave it here. Dawne’s own medical story is replete with struggles that send many people to the sidelines of life. Yet, it is my pain, my handicaps she carries and resolves.

These last 20 years now have reached another milestone. You might say we are in what is inevitably the last 20 years. Stop it … I’m not staring down death. Or, at least I pray not. It’s just that life from age 60 to 80 writes new chapters that are distinctive. I reflect more. I listen to young folks more. I find myself reaching back and checking my pace of life and times missed to say thank you to so many people who have made my life interesting. Mostly, I jealously guard my relationship with my wife, Dawne, and hope that she knows just how much she is me and I her.

You meet Dawne regularly here. She befriends my friends, you. She tracks birthdays. Her heartfelt compassion extends to you and your families. She marvels at our friendships and unjealously supports our time together. If ever the words “… and the two shall become one” were not figurative, surely these describe our relationship. I noted earlier, it is impossible looking into Dawne’s eyes and not see my pain, to not see my journey because it is hers. Caitlin Marsh, a K-T Companion, so eloquently described a her mother’s love for daughter – a love affair by virtual of motherhood. Beautiful! I add here a wife’s love for husband – a love affair by virtue of choice. I proffer that motherhood and marriage are anchored in one of life’s bedrocks – a women’s passionate, unassuming gift to those she treasures more than her own life.

Thank you Dawne.

Advertisements

2 thoughts on “K-T Syndrome a Shared Road Traveled”

  1. I love you more and more each day and each year. I would not want to share this journey with anyone but you. Thank you for all of your love and support in my work, and our family.

    Like

  2. This is the first time i have been to this site and just discovered it today. Your personal journal is the only support I have found on our condition throughout my life. I was diagnosed at the age of 3 with K-T Syndrome, and I am now 20. I have struggled to find answers or even a knowledgeable medical team to consult with on my condition, and the doctors that I have seen have consistently stolen my hope for a normal life right out from under me. It is a hopeless existence to feel that you walk this path alone and I am so grateful to have found what seems to be your life that you so graciously share with the rest of the people who struggle through the same battles we all face daily as a result of our condition. I feel incredibly privileged to read some of the posts on here that have re instilled some hope in my life. And the above post… I could only HOPE that I would be so lucky as to find a woman that would stand by me, as your wife has, through all of the pain and suffering that our condition inevitably brings. All I can say is thank you for the courage and dedication that it takes to uphold this journal, and to let you know that your journey you describe here has forever changed my life and returned that hope that has been taken from me over and over again by all of the things this condition has stolen from me.

    Thankyou,
    Forever Grateful,
    Josh

    Like

Leave a Reply

Please log in using one of these methods to post your comment:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.