Milestones, Memories, and Just Getting By

Published on November 29, 2016November 29, 2016 by beatingcowdensLeave a comment

21 years ago I was 22. I was single, and a new teacher. I was just out of college, finding my way. I had a sister who was 25 and had just gotten married, and a sister who was 6.

I knew nothing of what life would have in store for me. I knew only of a few wacky surgeries I had had.

I also knew of some scary times surrounding that 6 year old I loved a whole lot.

Sometime around my sister’s wedding, the little one starting complaining of pain. When she volunteered to go to the doctor we were all stunned.

What followed was a blur, and a nightmare, and a million blessings all rolled into one.

There was this tumor, inside her spinal cord. Inside. By all rights, as my parents were shuffled from doctor to doctor, they were told the little one should not be walking.

Miracles followed miracles, and egos evaporated. The system worked the way it should and she was placed in the hands of Dr. Fred Epstein, arguably THE top pediatric neurosurgeon.

Dr. Epstein cared for Kathi in the operating room, and he cared for her out of the OR as well.

I can remember visiting one day when he came in the room with these remarkable cowboy boots. And he sat down next to her, and spoke to her before even addressing the adults hovered around. He was a gifted surgeon, and a true gentleman. He smiled, he laughed, and clearly loved what he did.

I knew that he had changed my sister’s life, well all of our lives, by being talented, and daring enough to get that tumor out.

I learned later he struggled in school and likely had a learning disability. He had been told he wouldn’t be successful. Someone forgot to tell his patients.

My sister swam for years, all through college, runs regularly, and has even finished the NYC Marathon.

I hope Dr. Epstein knew of his ripple effects. I hope all of the really great ones know. Because when it’s done right, medicine, surgery, compassion for others, it changes lives.

Kathi doesn’t have Cowden’s Syndrome. And I couldn’t be happier about that. She also no longer has a spinal cord tumor. And that, well, that is pretty cool too.

My sister’s surgery is one of the many things that helps us keep perspective here. Everyone suffers. Everyone rejoices. A diagnosis doesn’t really change that. Everyone has something.

21 years ago, this doctor, and his cowboy boots, and his smile, saved my little sister’s life.

She has this tatoo on her, as a constant reminder of the wise words of this gentle, superhuman.

“We may know too much about the unpredictable ways of the world to expect a happy ending, but we can’t help but hope for one all the same.” – Dr. Fred Epstein

Dr. Epstein suffered an unfortunate accident in 2001 that rendered him unable to operate. He died in 2006. The ripple effects of his work will live on forever, in my family and across the world.

Dates. Memories. Celebrations. Gratitude.

Today we think of Dr. Epstein with thankful hearts. Thankful for the memories he has allowed us to have, and for the ones we will continue to make.

September 22, 1995 - 2 months before her surgery — September 22, 1995 – 2 months before her surgery

All these things give us the strength to remain

#beatingcowdens

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

Laugh Out Loud

Published on November 5, 2016 by beatingcowdens5 Comments

We use the phrase all the time. Anyone who texts or uses any social media understands LOL. But, today I got a more clear explanation of why it’s essential.

At Voice Therapy this morning we talked about “habits,” things I may be doing without realizing it to strain my voice.

I was told that both laughing and crying can be damaging.

Crap. I’m screwed. Laughing and crying are things I do- often.

But, she explained. Laughing, or rather “fake laughing” when you hold it in your throat is stressful and damaging. When you laugh, you should laugh full and from your belly. You should, for lack of a better phrase, “Laugh Out Loud.”

Well, ok. This I can do. My husband cracks me up. I mean most of the laughing I do in my world originates from him. And it’s the kind of laughing that’s so loud and clear that I often find myself praying there is no belt on my jeans. This laughing is just fine.

The laughing that is no good, is the fake laughing. Go ahead, try it. When you want to make believe you think something is funny and what comes out is a huge fake smile and a small throaty chuckle. This is no good. And you know what? I’m ok with that. Laughs, like anything else should be real. If I must be social, a smile will do.

I was also cautioned that crying can be damaging. This one worried me. I am not a depressed soul, but the way I stay sane is to live my emotions. I cry- when I am thrilled, nervous, sad, worried, happy, and other times too. This I could not give up. But I breathed easier when she explained. The crying we hold in, is the damaging kind. It ends up getting stuck in your throat and causing all sorts of problems. However, if you cry, and let it all out – it’s just fine. Makes sense really.