The Heart of a Champion – an open letter to my daughter

Dear Meghan,

Today Daddy and I watched you swim in the Silver Championship meet.  It was your first qualifying meet, and it won’t be your last.  We find it amazing that you qualified, and for the 100 butterfly no less, in only your second year of swimming.  To say we are proud would not even begin to define how we feel.

Today was just another example of how you amaze us, astound us and impress us.  I know, parents are supposed to be proud of their kids.  I get it. But, when I think of what you go through each moment of every day, I truly am left in awe.

I get that you like swimming because you can feel “normal.”  There is no special treatment in the pool and the clock forgives nothing.  Cut times are clear and either you make it or you don’t.  Believe me, I don’t look to make excuses for anything or anyone.  You know that I can be kind of tough.  (I get that from Grandma, along with a bark that’s worse than my bite… :-))  But sometimes in those moments when you are your toughest critic you have to allow yourself the same forgiveness your warm heart offers to others without hesitation.



Living with Cowden’s Syndrome is a tenuous balancing act.  To stay on top of things the way you do takes intense effort.  I think most people would be physically and emotionally exhausted to live your yesterday – let alone your every day.

Last night when your back gave out, and the pain was too intense for me to even touch you, I gave you every out.  I gave you every excuse not to swim today.  You wouldn’t hear of it.  Your hips, the exact point you need your force to kick for your favorite butterfly were tender to even the gentlest touch.  It took you hours to rest because your body allows nothing to contend with the pain.  So I held your hand as you wiggled and squirmed for hours.  I reminded you I loved you as you desperately tried to rest.  I stroked your head when you finally passed out from exhaustion.  And I was glad the lights were off to hide the tears that stained my face.  Tears, not of pity, but of grueling agony of watching my dearest love suffer some more.  I knew as I laid there it was unfair.  That your knee was still hurting too, and now your back.  I knew I made no sense for all this to be coming the night before something you wanted so badly.



That defines your life.  Sometimes the hits are small and consistent.  Sometimes they come out of nowhere, but you just keep going.  You just keep fighting.  And truth be told, you inspire me to so the same.

Yesterday we went to look at shoes.  You’ve been complaining for months that your left sock is tight.  The orthopedist measured your feet and acknowledged the 1cm difference between them.  But, I don’t think either of us took in the reality until we were in the shoe store and saw this.

Left Foot
Left Foot
Right foot (AVM leg)
Right foot (AVM leg)

Another realization that we needed to go about things a different way.  So we picked out your shoes, ASICS GT 2000 3 in a 9.5 and a 10.5 and we spoke to the store manager at Dick’s.  He will help us.  Because we asked.  But, I know it got into your head.  The wonder about the upcoming surgery in May and the worry about what this AVM is doing to your knee in its spare time.  And I HATE not having any answers for you.  But I don’t.  I can only promise to be with you every single step of the way.

And as I got your pills out yesterday morning, and I helped open your thyroid pills, I thought about the year since you had a complete thyroidectomy.  It was just over a year ago you became a thyroid cancer “previvor”  when your 19 nodules, including three precancerous ones, came out with your thyroid.  It occurred to me for about the 5,000th time this year, that your thyroid is STILL not balanced.  We don’t give up.  We keep trying.  But its you who has to wake up every day and function  ok soar, with levels that would leave people 2 and 3 times your age crying in their beds.

So when you took the block today, I took a moment to take it all in.  I took a moment to take a good look at you, and I swear I could see the heart of a champion beating in your chest.  I saw your green and black suit, and your prescription goggles, but in that moment I saw your raw heart.  I saw the feisty determination that gets you through each day.



You might not have seen your best time on the board.  But, me, I saw a champion.

The free dictionary defines a champion as:




1. One that wins first place or first prize in a competition.
2. One that is clearly superior or has the attributes of a winner: a champion at teaching.
3. An ardent defender or supporter of a cause or another person: a champion of the homeless. (or those with rare diseases – Ok I added that)
4. One who fights; a warrior.
And while you may not get a first place medal, you have won by walking through the door.  You have overcome greater odds than anyone ever really knows.
You take the high road, even when it’s the tougher one to walk.  You put other people first.  You advocate for those less fortunate.  You stand strong for what you believe.  You excel in school.  You soar at your extra curricular activities, and even within the pain that is relentless, you are an athlete too.  You my girl, are a warrior, a true champion.  Because as you get older you will come to realize that success is not defined by the highest grades, or the most first place ribbons.  Success is defined by your character, by the person you are.
So my girl, when you lay your head on the pillow, know that I admire you with every aspect of my soul.  Know that I respect that you daily work to be the best YOU, you can be.  Know that YOUR BEST is ALWAYS good enough.  Know that your compassion changes people.  Know that you, in your own way are making an impact in this world.  And most of all, know that you have two parents who love you more than you can possibly understand.
Thank you.  For being more than I could have ever hoped for in a daughter.  For even though we will hit rocky roads sometimes, we have seen so much, side by side and hand in hand.  You my girl, have the heart of a champion, and there is no one I’d rather travel this bumpy road with than you.
All my love always,

2 thoughts on “The Heart of a Champion – an open letter to my daughter

  1. We share many of the same epiphanies blessings and struggles. I admire both your daughters strength and tenacity as well as yours!

  2. This is beautiful. Parts could be in one I write to Connor. He had his karate tournament Saturday and didn’t fell like he did his best. He wasn’t satisfied with his two spirit medals. Tears fell. But it all went away when the judge asked Connor to spar a boy with Downs. Connor was honored. Somehow that judge knew Connor was the kid for the job. Then he commented about how perfectly fitting that was to have happened on Rare Disease Day. Hang in there!

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