There is a hero in this war on Cowden’s Syndrome, this draining task of “beatingcowdens” that we undertake each day. He doesn’t get much attention, and he prefers it that way. Yet, I shudder to think where we would be in this war without our strongest soldier.
He never could have known almost 16 years ago what he was getting himself into. Yet, somehow every day I feel the strength and power of his love.
We stood in front of God, and our family and friends on that chilly April day in 2000, and he promised to love me, “for better or for worse, in sickness and in health…” And he surely has been true to his word.
I am not to sit here and say, “life is perfect,” or “we never disagree.” Because I would be lying, and frankly that would be boring.
But, we work together. We swallow pride when it’s necessary. We say I’m sorry. We forgive.
And, what I can say, is there is not a chance Meghan and I could spend our days “beatingcowdens” without him.
Most often he is not physically with us. He works later than I do. I pick up the afternoon appointments, local or in NYC. I drive to swim practice. I wait there and drive home. I am gone hours and hours every day.
We communicate via text a lot. I type a paragraph, he answers in a word or two.
Yet there is this sense of companionship we share from afar. While he can not be with us at all the appointments, or the practices, or the general running around the days take us on, he is home, with us in mind.
I can not tell you how often we walk into a house full of the smell of a freshly cooked meal. It’s not unusual for me to find a bed full of clean and folded laundry. The dogs are cared for. The candles burn all winter when the house is closed and stale. The floor is clean. Little is left out and around because he knows my compulsions and respects them enough to help me when I’m not home enough to help myself.
None of these tasks are trite. They are what provides me with the momentary glimpses of sanity I so desperately need.
He is patient when we talk about fundraising. When the whole month of January, and part of February will be consumed with “Jeans for Rare Genes 2” because Meghan wanted to DO something. He works, behind the scenes, ever-so-quietly to spread the word, raise awareness and get things started.
He backs up technology and sits through software updates.
He updates, paints, and fixes just about everything. And he really HATES painting.
He is a father above and beyond all things. He loves our girl so completely she still holds his heart in her hands. He is her way to unwind from her tightly wound Mom. He is her chef. He knows how to tease her until she laughs, and how to hold her most precious needs close to his heart.
And when the night rolls around, and the weight of the day presses heavy on my heart, he has the right balance of knowing when to hug me, and when to make me laugh. My worries transcend even Cowden’s Syndrome, and the list of prayers grows deeper every day for those we love who fight more than their share of battles. He knows just what I need. All the time.
Cowden’s Syndrome permeates every day of our lives. It’s reality. It is 5 surgeries for Meghan in a little over a year. It is 70 minutes on the ultrasound table for me this weekend, hoping, praying that I had the most thorough tech ever, and she didn’t actually FIND anything. It is next steps, and strategies, and switching doctors, and making decisions, tough decisions.
The saying goes that if we all tossed our problems into a pile, we’d take our own right back. I would… if and only if I could continue to run through life with my husband and my daughter by my side.
Here’s to the unsung heroes in all of our lives… for the STRENGTH and COURAGE they provide. Give them a call, or a text, or a hug.
5 thoughts on “Unsung Hero”
Hello. I somehow stumbled onto your blog. (I know, how does one “stumble” onto a blog about living with Cowden’s?) I just wanted to tell you how much I admire you and your daughter for your strength and grace while dealing with such a trying disease, and your husband, too, for all that he does for you both. I wish you and your family well. 🙂
Thank you so much. Glad you “stumbled” upon us!
Hi my 17 year old Daughter was diagnosed with Cowdens Syndrome in December 2015. We live in the UK (London) – we have no support groups of any kind here and I’ve stumbled across your page whilst trawling the internet. I would really love to find someone with Cowdens, so my Daughter could just have a “chat” via email to help her come to terms with this diagnosis – thank you and I hope you can help us find some support (which is so desperately lacking in the UK)
I just sent you an Email. Hope it helps. xx