Jeans for Rare Genes 2 – beatingcowdens

The Best You Can…

Published on January 24, 2016January 24, 2016 by beatingcowdens2 Comments

Friday we met a good doctor. A new endocrinologist. He is young. He is friendly. He is smart. He is ready to be a doctor to Meghan. I am grateful.

Friday Mom got her second cataract done and checked before the storm. So necessary for more than visual acuity. It just needed to be done. I am thankful.

I was about to say today was one of those days where you have to focus on your perspective, and it will define your outcome. But, really that’s every day, isn’t it?

We woke up under about 30 inches of snow here in NYC. Now the thing about living in NYC is that you have to learn, as the Marines say, to “Improvise, Adapt, and Overcome.” Because nothing really stops. At least not for long.

Yesterday there were travel bans. Yesterday we were to stay off the roads. Today we are told that the City’s 1 million school children will report to school tomorrow, and with them, their thousands of teachers and support staff will report as well.

In many boroughs this is not such a big deal. Public transportation is at the ready. Moving around is easy.

Not the case here on Staten Island. Almost everyone travels by car.

Yesterday Felix tried to keep on top of the snow. It was fruitless.

Last night an ambulance got stuck in front of my house. My husband and a neighbor dug them back to a main road. We said a prayer for the person they were headed to, and continued on our night.

This morning, we woke early got the shovels and the snowblower. He started at one end, and I at the other. But in the front of the house I was met by my neighbors. We groaned a bit, and pleasant conversation ensued as we gave each other a hand.

At one point the conversation turned to Meghan’s footwear. Somehow. And as I explained that she has 2 different sized feet, and we buy 2 different shoes and toss the opposites, she seemed stunned. And I said soon after we toss the opposites we sit for a moment in gratitude for 2 working feet, and a financial situation that allows us to pay our credit card bills. She smiled. She gets it. She’s had life struggles of her own.

We got the cars free. We set ourselves up to hope for the best for tomorrow.

Then Felix headed with Ken to shovel out my grandparents.

Grandma, when memory came easier to her, used to sing, ” Count your many blessings, count them one by one…”

Grandma is 95 and Pop is 96. Life is more challenging for them than it ever was before. Yet there are so many blessings. They have neighbors that help clear pathways when we can’t get to them. They have a tenant who is a friend, who looks in on them and keeps us posted. They are really special, and we are grateful for the kindness of those they interface with daily.

When he got home, my husband stole a quick meal and headed out to make an igloo and a snowman with Meghan, after a romp in the snow with the dogs. He is a good husband, and a good Dad. A really good man.

Some time this afternoon my phone rang. It was an internet friend looking for some reassurance. I think I was able to give it. Keep your heart and mind focused. Stay physically, mentally, and spiritually healthy. Do the best you can with what you have, where you are. Always.

Tomorrow Meghan will see the knee surgeon. Time to follow-up on a less than stellar MRI/MRA experience the week before last. Time to check on the status of the AVM. Holding my breath that it’s behaving. Tomorrow I will hope all the main roads from here to NYC are plowed well, and I will gratefully pay to park in an overpriced lot. Perspective.

We are actively engaged in “Jeans for Rare Genes 2,” working on everything from ticket sales to journal ads to raffles. My Meghan is ready to channel this week’s pain into a focused goal. Meghan wants the PTEN foundation to have the money they need to create a patient database. Vision.

Every day we are given a choice. Many choices. Life is not all peaches and cream. Not for any of us. Some days I struggle. Most days I know which side of the bus the sit on.

Here’s to hoping for an easy safe parking spot at work tomorrow, a mind eased from the worry of loved ones, and a smooth trip to NYC.

Unsung Hero

Published on January 10, 2016 by beatingcowdens5 Comments

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.

“BE the Change You Wish to See in the World” – Ghandi

Published on November 1, 2015November 1, 2015 by beatingcowdens1 Comment

With another fall season upon us, life is in full blown crazy mode. And, to be honest, we wouldn’t have it any other way.

Yesterday, my 12 year old FINALLY throughly enjoyed a Halloween. It was such a thrill to watch. FINALLY, she was able to trick or treat, EAT a few treats, AND keep up with some serious walking with friends.

Of course, she slept until almost 1 pm, even with the time change, and woke up unable to move her AVM knee. These are the repurcussions we expect. She is not “normal,” but when she can pretend for a while when it really counts… well that is a great success. And even as she lay still most of the day, she smiled. She sang. Joy.

Fall is full of things, and so far she’s managing nicely. With a marking period to end Friday, Pupil Path tells me grades are at an all time high. Practice 4 times a week has her swim times at an all time low. And, drama twice a week is leaving hopeful anticipation as “The Wizard of Oz” is soon to be cast.

She is working with me to plan our second fund raiser in February. We chose a date close to World Rare Disease Day, with the continued desire, and intention to bring awareness to our rare disease, and over 7,000 rare diseases worldwide that affect 10% of the world’s population. We are acutely aware that to be heard, we need to join collective voices. Individually we matter little to most of the healthcare system, overwhelmed, uneqipped to diagnose and treat us. Together is the only way we have a chance.

Last year we raised over $12,000 and donated it to the PTEN Foundation (www.PTENfoundation.org) and the Global Genes Project (www.GlobalGenes.org). This year we hope to exceed $20,000 in donations.

We have brought in Bob Jackson, a performer from Walt Disney World. He will be flying up to entertain our guests. Our whole family LOVES Bob, but Meghan especially will not hear of celebrating a birthday until Bob sings to her. We’ve spent her last 8 birthdays at Disney.

Here is a youtube video that is a great indicator of the FUN time Bob brings!

We have lined up sound with Partners in Sound, and we have Balloon Charlie returning to also help entertain the children.

We have established a children’s menu in hopes that families can enjoy the afternoon out together.

There will be raffles and lots of laughing.

There will be comfortable JEANS and good friends.

We are setting up a facebook group called Jeans for Rare Genes 2016 Staten Island, and we encourage you to join.

We have tickets to the event available through Jeans For Rare Genes 2 – Tickets and Donations link

Meghan is living life as a 12 year old who just happens to have had 15 surgeries. She is a 12 year old who just happens to have a Rare Disease. She is a 12 year old who realizes that as challenging as life is, so many others suffer worse. She is my hero. She is MY role model.

Together we will make Jeans for Rare Genes a thrilling success. Hope to see you there!