Default to Kindness

Published on November 5, 2016 by beatingcowdens3 Comments

Meghan loves to swim. I mean, athletically it wasn’t where she started, but the knees. Six surgeries on the right knee, and there was to be no more soccer, and no more dance. After the 6th one, there was to be even no more breaststroke. There is no gym class in school. There is limited walking. There is one foot, a size bigger than the other. The “off sides” that that creates in her body can be quite painful. But, the pool…

Oh, how my girl loves the pool. She is an athlete. She is a competitor. And the pool allows her to be both of those things to the best of her ability.

For the 3rd time in the 4th year since joining swimming, this September brought a new coach for her, and a new group of teammates. There was anxiety about the switch on so many levels. But, as we always say, life has a funny way of working out.

This coach is a perfect fit for her. They practice hard, and often. He is structured, and firm. But he is compassionate, and constructive. He watches. There are sometimes 50 or more swimmers in the pool when he coaches, and I swear he does his best to make some comment to each of them every practice. And, after they compete, his feedback always connects to practice.

And practice, for Meghan, has not been a problem. While maintaining a “Pupil Path” account that no one could ever critique, and planning a major fundraiser, and looking for high schools, and managing doctors appointments, and a mom who doesn’t feel quite herself, this girl has, most weeks, attended practice, Monday, Thursday and Friday afternoon, as well as Tuesday, Friday, and Sunday morning. Quite literally, swimming is good for her health.

Swimming can be a very solitary sport. It takes a good deal of mental toughness to stare at a black line for hours. Interactions with teammates on deck or during dryland (out of water training) are cherished.

Even then, as the “new kid” in the group, you can sometimes wonder about the relationships. Meghan has been very careful not to share too much of her Cowden’s story with these swimmers. She wants to be viewed as one of them, and she is doing a good job holding her own, all by herself.

And then there was today. We were at a meet and she was scheduled to swim the 200 yard butterfly. If you swim, no explanation is needed. If you don’t let me give you a frame of reference. For the group she swam with today, 72 girls swam the 100 yard freestyle. 10 signed up to swim the 200 yard butterfly. It is not an event for the faint of heart.

Meghan feared disappointing, herself, her coach. me. She was scared out of her mind. So scared that it was out of character. Out of character for a child that has had 17 surgeries, and countless tests. ER visits, and hospitalizations. She was that scared.

And as the race approached I watched helplessly from the stands as she began to unravel. And I watched with a grateful heart as teammates picked her up and put her back together again.

The one who I can only say was acting as my angel, talked her right onto the block. It only took a second of my attempt to video the race to see that something was terribly wrong. There sat her goggles, first mid face, then in her mouth occluding her breathing. In butterfly you can not break stroke. At the end of the first 50 she stopped. She was done.

My heart sank, and ached for her. I wanted to pick her up and hug her, and take her back to the rocking chair I used to use when she was a baby. But she’s 13 now – so I could only watch.

The official came to her and asked if she wanted to try again in the next heat. There were 2 lanes open. She said yes. And as they placed her in one heat, her friend, my angel, came to the official and asked if Meghan could swim, “in the lane next to me.” She said yes, and as Meghan barely got settled on the block, another teammate flagged the official to wait a moment. Meghan’s goggles were still not on.

The start went fine this time. The goggles stayed on. And she did it. The whole thing.

By the time she got to her last 2 laps, most of the other girls were finishing. But, then there was more magic. There was cheering, from her teammates and strangers alike. There was a push for her to get finished, to press on, and to make it. So, she did.

I think I cried the last two laps. I was struck by this child of mine, her life, the adversity, and the stubbornness. The ability to not give up. The desire to be normal, and to succeed. And as she touched the wall her team mate, that same angel, swam right into her lane and gave her the biggest, most genuine hug.

She did it.

Not too shabby for the first time. And more than one teammate whom she respects greatly told her they gave her credit for getting up and trying it again. So did her coach.

Meghan isn’t the “cool” kid. She sometimes struggles a little. But, she remains true to herself at all times.

Today, she got to see the kindness in others. It was pure. It was genuine. It was unsolicited. It was the best kind.

13-18 year olds can be a tough group. But these kids showed today that when they are left at their “default” setting, when they are alone and see soemone hurting, they will choose kindness and compassion.

She is asleep. Tomorrow is another day of swimming. But, those events won’t cause this angst.

Gratitude fills my heart, that once again even at the toughest moment, good shines through.

And as she said goodnight, she told me, “Next month, when I swim the 200 fly…”

Endurance. Persistence. Stamina.

#beatingcowdens

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

Published on March 1, 2015 by beatingcowdens2 Comments

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.

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:

cham·pi·on

(chăm′pē-ən)

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,

Mom

The Speed of Life

Published on February 21, 2015February 21, 2015 by beatingcowdens1 Comment

I am always amazed by the speed of life.

I don’t know why at this point I’m not used to it yet. But, as I sit here with my leg elevated recovering from a vein stripping on Thursday, I find it hard to imagine it hasn’t been quite a week since “Jeans for Rare Genes” took place.

Acknowledgements have been sent by Email. Some are waiting for the mail, and others will be delivered to the local businesses that supported us in the next few days. We wanted everyone to know that what we considered a lofty goal of $10,000 to be donated to the PTEN Hamartoma Tumor Syndrome Foundation, and The Global Genes Project has been surpassed. The checks are still being counted, and the final payment from eventbrite is due any moment. But it looks like the total will clear $12,000 before we are through. Not too shabby for the vision of a feisty 11-year-old who has already begun to make tentative plans for what we will do even better “next year.”

And as I’ve digested the success, and have processed the overwhelming pride of a mother, and expressed our gratitude to family and friends near and far, (like the Yokleys from Colorado!) I’ve taken some time to reflect. Standing before a room filled with 150 of our friends and family on a bitter cold February morning left my insides warm and toasty from the love surrounding us.

Life moves quickly. For all of us for different reasons. But, with this syndrome x2 life seems to be literally swallowed by doctors, and tests and surgeries, with every spare moment trying to shove “normal” into the cracks. We miss stuff. A lot. We miss friends, and gatherings and social events, and celebrations, and ordinary get-togethers. We are absent more than we are present. Our friends and extended family are often neglected as immediate family has to occupy any moment that isn’t already full. I don’t actually remember the last time we had friends for pizza, or a casual summer gathering on the deck by the pool.

And I think about the pure innocence and wisdom of Meghan and Connor, as they finally met. Two friends from miles apart, with a life altering syndrome in common. Two bright, funny kids who have seen more than their fair share. Two kids who get compassion, and understanding, and life. Two sets of parents, immediately at ease with each other because we understand. And sometimes that’s all you need. And if you missed the two articulate, wise beyond their years, kids talking to the local news – click here.

I think about Georgia, a world away in Australia, and how she and Meghan have hit it off in a way only girls who share such a bond ever could. I think how wonderful it will be one day to get them together too.

And I think about Ashton, older than Meghan, but a girl on a mission all the same. And I think of all she has to offer the world, as she endures her 14th procedure on a stubborn AV fistula in her brain this week. I think about all the prayers we say, and all the questions Meghan asks. And her Mom. My peer. A Cowden’s patient too. A school teacher turned full-time mother later in life. Because it was meant to be. I think about the hours spent texting and messaging. And how I already feel so comfortable…

And I know that the room was full for them too.

I am grateful beyond measure for the ones who understand. Who don’t give up on us. Who stand with us, beside us, behind us, or just about wherever we need them to be.

I will resolve to try to reach out more. I just don’t know how many more hours I can squeeze out of a week. But I will try. Because the speed of life is astounding.

Sunday some of my college friends were delayed to the fundraiser. They were in the hospital with one, as her father was very ill. Yet, they found the balance. They stayed with her, and then came to us.

Thursday as I came out of I think my 7th vascular procedure I got the texts on my phone that things weren’t good. Her Dad passed away Thursday morning. My heart hurt. It was ironic really, as I had felt my own Dad ever-present as I got checked in and prepped. I got to thinking that out of 5 of us from college that I really stay in touch with, three had already lost a father, and one a mother and a brother. How did we get to this stage? How did life move so fast? And although my own recovery will keep me from making it to her side tomorrow, – I know she will feel the love in my heart.

We have to try to slow things down. Sometimes.

But, I’m not sure when. Or how. Because yesterday I sat in the back seat with my heavily bandaged leg, and we made the trek to Cohen’s Children’s Hospital on Long Island. And we saw an orthopedist about Meghan’s knee. Her vascular surgeon suggested we go – before the next embolization procedure in her knee.

Her MRI shows some damage to the knee structure. “Blood is a terrible irritant, even in small quantities…” And I would imagine that this AVM, probably active since birth, has been slowly eroding the knee. So there is swelling in the bone marrow, and issues with the patella, and all sorts of explanations as to why it keeps hurting. There is no real solution, but a synnovectomy will get him in the knee. He can “clean out” some of the scar tissue, and we can pray that gives relief and doesn’t provoke a “hyper healing” Cowden’s type response. But we have to try. They have to see. It’s time to get a real baseline.

So they will present her case next week. And we will hope that the recommendation is for the vascular surgeon to do his work on the AVM at the same time the orthopedist does his work. Because the recovery from the embolizations is tough. This one promises to be outright nasty. “At least a week on crutches. Minimum 4-6 week recovery. PT to build back the strength in the thigh muscle.” They will fill the knee with saline to get a clear view…

So he asked about her activities, and approved of swimming. Almost relieved when she told him she had given up soccer and dance because they hurt too much. He asked what strokes in swimming, almost tentatively, as if he was hoping for the answer he got.

“Butterfly is my favorite!”

And he looked relieved as he explained to Felix and I that butterfly kick was best on the knees. Meghan chimed in, “because you kick from your hips!”

We were once again impressed by her instincts and her depth of knowledge of her own body. She gravitated to a stroke most hate because it probably hurt her the least. We got the nod to let her continue freestyle and backstroke. But breaststroke is off-limits. Probably forever. Ironically – she never like that one much anyway…

We asked about the timing of the procedure. He thought before he spoke and told us he wanted to hear what his colleagues had to say.

We pressed him for early May. The tail end of the CYO season. The week after her first play, “Hairspray” at school. He told us to take it very easy. And if she doesn’t have another bleed before then, that’s probably a reasonable time frame.

“If… Probably…”

We should be used to all this by now. But, I think you never get used to watching your child get beat up over and over again. That’s why we pushed to try to plan… to try to squeeze in all the normal we can. Because she can’t keep having the fun taken away for the medical. It’s not ok. But, we plan very tentatively.

The speed of life can be overwhelming.

Thankfully we have so many of you along for the ride.

Next Saturday, February 28th is World Rare Disease Day.

Next Sunday, March 1st is Meghan’s first championship swim meet. Silvers. For the 100 butterfly – naturally.