Sometimes GOOD Things Do Happen…

Published on January 4, 2018 by beatingcowdens3 Comments

Sometimes really GOOD things happen. And when they do it is just such a jubilant feeling of gratitude and relief.

In October I wrote at length about Meghan’s struggle with PTSD and anxiety. I wrote in the blog linked below about our commitment to obtain a service dog.

A blog outlining Meghan’s journey towards a service dog.

When we made this commitment it came with an enormous price tag. It came after two of her doctors strongly encouraged the decision. It also came with a determined sense of urgency that we would do whatever was necessary to make this a reality for her.

After searching, we interviewed with, and contracted with Medical Mutts. We were drawn here because of their commitment to rescue their service dogs. We currently love 2 rescues, and a third spent several wonderful years as a key part of our family. We believe strongly in their mission. We put the deposit for the dog on our credit card, a total leap of faith that was so necessary at that moment when she needed HOPE.

Meghan had weighed out the pros and cons of a service animal. She had overwhelmingly decided on the pros. And, while we know there will be bumps in the road, her father and I trust her instincts.

The wait time for a dog can be a year. We had to get her into the system.

Then we paused and wondered how on earth we were going to manage the cost of obtaining a fully trained service dog from Indiana, with costs including a week of lost wages, air fare, hotel, and food while we were there. We knew we needed help.

We reached out to local charities and were directed first to ECHO –Emergency Children’s Help Organization

Previously, I had an idea they existed, but I had no idea we would ever need to ask them for help. The whole act of asking for help is humbling. But, if anything can humble you, it is the desire to provide your child with what she needs.

When I spoke to Gina she was friendly, helpful and calm. She spent so many different sessions on the phone with me as I drove her wild with questions. The application was intense and comprehensive, but I understood why.

With time and patience I was able to deliver her a completed application close to the end of November. When I submitted the application, I had complied a list of other places we would apply to once they decided if they were going to grant us money. I had never done anything like this before.

Through the process I was able to compile a history of Meghan’s charity work around the community. I was proud to be able to attach a document detailing her work.

The executive board at ECHO was presented with Meghan’s case awarded her a grant that exceeded my wildest hopes and dreams. With one phone call Gina was able to tell me that the balance of the dog would be paid in full, and there would be stipends for the travel to Indiana, the lodging, the transportation and the food. In short, we were told to focus on Meghan. The financial burden of the dog she needs so desperately had been lifted.

I have no doubt that Meghan, once she feels well again, will return to the charitable end of things, fundraising for PTEN disorders, and for those less fortunate. It is part of her heart.

Right now, we have HOPE to carry us through some difficult times. We have HOPE and eager anticipation for a dog that will become her best friend.

HOPE right now is spelled ECHO.

Please, if you’re inclined to support a quality organization – visit their website and consider a donation.

Emergency Children’s Help Organization – Donation Page

We will wait for the new dog anxiously in HOPE and GRATITUDE.

Forever,

#beatingcowdens

A REAL Love Story

Published on February 13, 2017February 13, 2017 by beatingcowdens2 Comments

I’m not one for Valentine’s Day. Never was. It didn’t matter to me if I was dating or single, it just never made sense. The “Hallmark Holiday” seemed determined to bleed money out of people who shouldn’t have to work so hard to prove themselves one day a year.

If you love someone, prove it every day. It’s not about the big things. It’s about the things that matter.

Picking up someone else’s mess, doing someone’s laundry, a random hug, an “I love you” that’s real and spontaneous, treating each other respectfully all the time… and so on…

My husband and I decided years ago to exchange only cards on Valentine’s Day. I already know how much he loves me. We do what we can to get a little something for our girl, well, just because. And we, we try to get organized and celebrate our anniversary. The day we stood before God and our families and friends and pledged our “for better or for worse,” and “in sickness and in health.” Because those vows – they matter so much.

Tomorrow I will head to Manhattan for three of my annual appointments, carefully timed to cost me exactly one day off of work. I will see the oncologist, the breast surgeon, and the endocrine surgeon, with some blood work thrown in for good measure, and the results of a sonogram from Saturday checking on that bumpy spleen of mine.

I will return in time to have parent conferences at my daughter’s school.

Not a “romantic” day by any means.

I will wear a red shirt that says “Strong” and I will make it work with a smile.

Because, I will be thinking of this heart.

Last year in January, my Grandfather fell. It was after a trip to the grocery store. We later found there was stroke activity, and that January day began a slippery slope that ended with his passing on March 3rd. If you know me personally at all, you know my grandparents were larger than life to me. That’s it. They were 70 years married, and even though Alzheimer’s had largely robbed Grandma of much of her memory, my Pop loved her with his whole heart.

Last year, coincidentally, my grandparents spent Valentine’s Day in the nursing home at the same time. And, although I’m not totally sure either was aware of the date at the time, we were.

A few days after Pop passed, my uncle sent the picture above. He was cleaning out the linen closet and tucked in between some things was this heart. By every rational account it must have been purchased by Pop, for his love, on that day in January when he made his last shopping trip alone.

My Pop was a man that planned ahead. He was a man who always thought of his wife, and lived every day loving her with his whole heart. And my Grandma, well, she’s pretty special herself, and she’s always been quite fond of chocolate.

Nothing flashy, nothing fancy. But he saw the hearts early, and thought of her. That’s how he rolled. Always kissing her hello and goodbye, clipping roses from their rosebush, and doing what he could, even when there was nothing more he could do.

My newsfeed, and my heart have been full lately, of people struggling and suffering. The prayer list is long. There is pain and sadness and worry. But within, there is also love, and gratitude and compassion.

Life is about balance.

I’d rather spread out the love to last all year. I’ve got plenty to share.

For it is with love alone that we hold each other up.

Love for those around us, and those who’ve gone before, motivates us.

Grandma is still “here” but many of you understand when I say I miss my grandparents. The love though, the love and the example they set is imprinted forever in my soul.

It is with Love and Gratitude that we find the strength to remain

#beatingcowdens!

Appreciating the Rainbow AND the Storm

Published on July 7, 2015 by beatingcowdensLeave a comment

Let’s be real. Plain. Honest. Real.

Sometimes we all want to throw our hands up. Sometimes we want to quit. Sometimes we want to hide in the closet or under the table alone. For a long time. Because EVERYONE HAS SOMETHING….

No one’s life is easy. The trick for me is realizing that and moving on.

Yep, some days I throw a fit right here in my house. Some days I am sad and overwhelmed. Some days I even cry, like here (http://wp.me/p2qi4v-10g)

But, the rule is about 15 minutes. I am allowed to have a pity party for about 15 minutes. (Sometimes that 15 minutes happens again, and again – but not usually.) Because then, I have to put on my big girl panties and make it work.

We play a lot of games of perspective here. We work on looking at things another way. “Flipping it…” so to speak, to try to get through.

The end of school is a crazy time for us. It’s supposed to be a time to rest, and unwind. But, really, it’s just shifting gears. Most of our doctors keep us on a “Six month leash,” so we do our best to schedule one round the very beginning of July. This way if anyone needs anything else there is time before school starts again. The other cycle is distributed around February vacation and school holidays. The only problem with this is it grossly limits the number of ACTUAL holidays there are in our lives. There is a good deal of “Go, go, go…”

Despite our occasional “preteen issues” my daughter is insanely easy to please. She wants to swim. She wants to act. She wants to read. She wants to watch tv. She wants to socialize with ~~children~~ preteens who are nice to be around. She wants to eat good, safe food, (cooked by her father not me!)

What she’d prefer not to do is sit. In the car. On the BQE. On the LIE. In the waiting room. In the exam room. Over, and over and over. Yet, still she handles it gracefully. She packs her own bag with a variety of things to occupy her time, and some snacks too. She really does not complain. (Except maybe if there’s a needle…)

What I try to do is spare her some appointments any chance I get. So when mine come up I try to leave her behind, and that’s what I did yesterday and today.

See, between us, there will be 15 appointments in two weeks, ending this Thursday.

This morning I made my 3rd trip to Manhattan in the last 7 days, but yesterday and today I drove alone. Meghan was tucked away at camp. Happy as could be.

I sat in the car, alone. The 20 or so miles never take less than an hour, so the luxury of satellite radio, and my green tea, (plus and e+Shot when I need it) are all mine to savor as we inch along.

I noticed today I was very calm. This life, this Cowden’s Syndrome life, is overwhelming, monotonous, and sometimes very stressful. But, it’s our life. Not glad by any means, but grateful that this load has been bearable thus far.

Some of our doctors could stand to be replaced, but many are stellar.

We are looked at so carefully all the time, that the chances of us missing something important have drastically decreased.

We have real life conversations, about real life problems, and we handle them with A LOT of humor.

We have a home that is full of love, and a witty, intelligent, young lady growing here.

We have two steady jobs.

We are able to vacation, and enjoy a few extras along the way.

We have become adept at navigating the bumpy road as a unit, not just Meghan and I, but her Dad as well. We are a team of three.

We have found nutritional products that keep us energized and strong as we brave the storms.

We are often dubbed the “healthiest looking sick people.” A comment that always makes me smile.

Some people like to use the word “blessed.” I have some trouble with that. If you are the person amidst terrible tragedy, are you then to feel you are not “blessed?” I may have a few questions for God, but the God I believe in doesn’t work that way.

Grateful – feeling or showing an appreciation of kindness; thankful

Now I do believe that there is always room for gratitude. There is ALWAYS something to be thankful for. For us, there is OFTEN a LOT to be thankful for.

Gratitude is not about always being happy, and life always being perfect.

“Gratitude consists of being more aware of what you have, than what you don’t” – Unknown

Even as we journey daily BEATINGCOWDENS, I am striving for an “attitude of gratitude,” for myself and my own sanity, but also for my daughter, who watches and learns from breath I take.

Milestones

Published on December 30, 2014 by beatingcowdens1 Comment

When I started this blog just about two and a half years ago, it was to serve as therapy for me. It took a while before I even started linking my posts to facebook. I didn’t pay much attention to the stats of the blog, except to occasionally marvel at the random countries my blog was being read.

This week while searching the year that was, I happened to notice that this little blog has cleared over 100,000 views!

Stunned. Amazed. Humbled. Grateful.

I think of the people who have reached out to me through this blog. People looking for an ear, or a point in the right direction. I think about the newly diagnosed who have come my way a few times, and have been relieved to learn everything can be ok with Cowden’s Syndrome.

I think of the blogs I follow, of people with and without Cowden’s, and all I have learned. Most especially that WE are not alone.

I think that spirit of companionship, whether it comes from a country across the world, or a city nearby is a factor in what motivates me to keep writing.

But, mostly blogging is my therapy. My free therapist. The computer is my listener. Where I can air my thoughts and ideas, and worries and hopes and dreams. And then I can edit myself into the positive mindset necessary to press on. This blog keeps me away from the negativity and the despair that can sometimes accompany this life.

And yesterday as I recapped “The year that everything broke…” I was reminded of all the blessings that came our way in 2014. And despite the lows, there always seemed to be someone, somewhere, with some random act of kindness, who was able to help us turn things around. For all of these people – and they know who they are – accept my gratitude, OUR gratitude. For really this is our story.

Although I am not much a fan of “New Year’s Resolutions,” or proclaiming that things will be drastically different in the minute it takes to pass from 11:59 PM on December 31st to January 1 at 12:00 AM… I wanted to highlight some of the positive things that have gone on for us in 2014.

We began last year, much as we will begin this year, preparing for Rare Disease Day. In February there was an assembly at my school. We gave out ribbons to all the students. Meghan and another family, two dear boys who had been affected by a different rare disease spoke. They opened some eyes that day.

And in the midst of that assembly Meghan met Borough President Oddo. The two struck up conversation like old friends. Meghan immediately respected and admired him, and he has become a mentor of sorts. They are in Email contact, she has been to Borough Hall to visit a few times. He was really the impetus behind Meghan believing there is no limit to the difference she can make in the world. He continues to encourage her as she plans Beating Cowden’s First “Jeans for Rare Genes” fundraiser on February 15, 2015. I feel so fortunate for her to see such a positive role model who changes the lives of so many just by being himself.

Meghan chatting with Borough President Oddo!

Meghan's friend has been a great support in so many ways. — Meghan’s friend has been a great support in so many ways.

We had a fundraiser last year as well, and raised several thousand dollars which was donated to The Global Genes Project. Satisfaction. “For the babies who really need it, Mom.”

In February also in the midst of what was almost a train wreck around a bad snowstorm and a carefully orchestrated thyroidectomy, I frantically called in desperation to get us into NYC the night before the surgery. Ultimately we ended up with the greatest gift, as we were privileged to spend a few hours at Ronald McDonald House in NYC. The facility, the employees, the organization – all phenomenal. Our Guardian Angels were active that day!

Meghan received some awards this year that made us very proud. In the Spring she was selected as “Staten Islander of the Week.” At graduation, she received the “Portrait of Courage” award. In the summer she received a nomination from the Global Genes Project for their “Teen Advocacy Award.” On my birthday she received a “Kid of Achievement” award from the Staten Island Children’s Museum. She was starting to get the idea that SHE can make a difference.

Meghan 2014 Nominee for Global Genes Project Teen Advocacy Award

2014 Kid of Achievement - Staten Island Children's Museum — 2014 Kid of Achievement – Staten Island Children’s Museum

In July the Borough President’s office arranged for Meghan to throw out the first pitch at a Staten Island Yankee game. And this girl who had never thrown a ball before received a crash course from some great friends. Not only was the pitch a success, but the number of friends and relatives who joined us at the game, wearing “I love someone with Cowden’s Syndrome” T-shirts, was beyond touching. We are loved.

August saw the overcoming of a lifelong fear of roller coasters, for both of us.

And in the fall we saw the first glimmer of hope that Meghan’s dream for a denim ribbon necklace was steps from being realized. Exciting times all around.

We capped the year off at the Stone House at Clove Lakes, with another family with a different rare disease, lighting their Christmas Tree to help raise awareness of rare and genetic diseases. Meghan’s intermediate school chorus came out on that chilly night to support the cause.

Meghan and Uncle Chris at The Stone House

So Cowden’s Syndrome, while it creates more than it’s fair share of heartache and obstacles, also creates opportunity when we look for it.

Just like we notch off and remember each surgery, and the milestone of overcoming the recovery, we also acknowledge, enjoy, and savor the positive milestones.

We remember that “everyone has something.” We are grateful for the blessings in our lives. No one’s life is perfect, and far too often we all suffer from the belief that someone else’s “grass is greener.”

May each day hold for you enough positives to counteract the negatives, and the ability to look for the good in all situations, people and places.

That is my wish for my family and friends near and far, not just for the new year – but for every day of your lives.

Visiting Daddy at work on the New Year's Eve Ball — Visiting Daddy at work on the New Year’s Eve Ball

First Pitch!

Published on July 31, 2014 by beatingcowdens3 Comments

We don’t watch many sports in my house.

Meghan’s sport of choice is swimming.

So it came as a little surprise when she was asked by the Borough President if she’d like to throw out the first pitch at a Staten Island Yankee Game to help draw attention to her platform and continue to raise awareness of Cowden’s Syndrome.

She didn’t hesitate with the “yes,” although she admitted not being too sure of what she had gotten herself into.

Thankfully my very good friend has 4 boys. And among them they were able to locate some gloves and some baseballs for a few impromptu pitching lessons. And I have to say they did a good job.

Leaving for the game she had quite a nervous stomach. Once we arrived she was focused on a “practice pitch.” Once that was accomplished we had a few moments to take in the magic around us.

60 of our friends and family had taken time out of their lives on a busy Wednesday night to support Meghan, and our need to raise awareness of Rare Diseases. In addition, it was team night for Meghan’s Swim Team, so there were many of them cheering as well.

When we had first set the date, I wasn’t sure how public to make the event. I didn’t want to put people out. So I posted it on my Facebook wall a few times. I was floored. And intrigued. My cousin Kim asked me to order 23 tickets for her. I didn’t ask too many questions. My family is big enough that cousins have to trust each other.

We were greeted by Kim, and there were T- Shirts. It took me a second or two to process. Then I read it. Looked around. Choked back a tear and threw it over my head.

The pitch went off without a hitch, and the announcer crammed so much information into a minute it was amazing. It’s hard to hear, but trust me!

PRESS THE ARROW…

The night was just fun. Exactly how summer nights should be. The weather was perfect. The company was outstanding.

And, even as the crowd began to dwindle, we sat to watch the game, with the Yankees down 4-1.

And in the bottom of the 8th as it neared 10 PM, Felix and Meghan made a deal. If the Yankees scored in this half, we could stay till the end.

Four runs later, they pulled off a beautiful “come from behind” win.

And as we walked to the car we stopped at the “Postcards 9/11 Memorial” and we remembered how very lucky we are, even in the midst of chaos.

That first pitch, symbolic of overcoming challenges. Of conquering fears, and of new beginnings.

That win the Yankees had just pulled seemingly out of thin air, was the result of a refusal to quit.

They worked like a team. They made it happen together.

A perfect ending to a perfect night.

Here are pictures of SOME of our team. There are just so many more that support us each and every day.

We LOVE you all. Thank you for helping us tell the world. We are …

BEATING COWDENS together.

There are not enough photographs, for those at the game, and for those who are ALWAYS with us in out hearts. There are not enough words to express our gratitude for the love showered on us so regularly.

It is only with your support that we continue to push on.

MUCH LOVE TO ALL!!!

No Regrets

Published on July 26, 2012 by beatingcowdens1 Comment

give thanks — Photo found on the Facebook Page “Perpetual Optimism”

Isn’t that just the truth?? Goes along with the idea that “Everybody has Something.” Now if we could all just find a positive way to channel it.

Not always so easy. I cried today. I finally found a nice oncologist who takes my insurance. I saw her on Tuesday, but she wants me to get right on scheduling the colonoscopy. So I called to set up the appointment with the GI doctor and the first appointment was the day after our vacation. As I hung up the phone cried – overwhelmed by ANOTHER doctor, ANOTHER appointment. But it was my very smart Meghan who said, “Mommy if it is going to make you cry, just make it the next week. You can still go, just a little later.” I rescheduled.

My girl is in bed. Sick and feverish. We ducked an ER visit tonight, and am hoping to do the same tomorrow. Along with the Cowden’s she just has a rotten immune system.

Who knows what tomorrow will bring, for any of us?

Tonight I will not be angry about the past, the diagnosis, the syndrome that has taken so much of our time, freedom, and spontaneity. I will instead be grateful. For the geneticist who cared enough to find me an oncologist when I couldn’t. For the pediatrician who has called 3 times since we left his office at 2.

This past year has changed us, for sure. Cowden’s Syndrome has transformed us into different people. But I will never look back at this last year with eyes of regret or sorrow. I look back with gratitude. For the health I have, for the friends that have stood by me, for the new friends I have made, for my family.

Constantly changing, none of us are ever the same. The question is WHAT do you want to change into? I know what I pick…