So despite a few tiny errors, we were really touched by this!
Category: My girl
Meghan’s Rare Disease Day Video 2015
More about a successful event later. For now, news that we’ve raised over $10,000 to share between the Global Genes Project and the PTEN Foundation is plenty while we rest.
PLEASE, spend 7 minutes on Meghan’s video. You won’t be sorry!
Winning
Winning. It feels good. And it’s not about being first. And it’s not always about being “the best.” Sometimes winning can be as simple as not losing!
Every day we wake up and prepare for battle. The “sword” is sharpened before we get out of bed. We can not take a step unprotected, or unguarded. And, even being on guard against Cowden’s Syndrome all the time is often not enough. So often things just happen…
Sometimes we get a little A LOT frustrated. Often we feel beat up by this beast that we battle. “It” gets quite a few swipes in. But, we have, and we WILL always remain on top. That’s why we are BEATINGCOWDENS.
So tonight, as we drove home from a swim meet in the Bronx, we chatted – my girl and I.
And it was pleasant, easy conversation.
So often as the weekend comes I reflect on the week that was in awe that THAT much “stuff” fit into the week.
This was no exception.
Last month she was sidelined from the swim meet. Recovering from knee surgery just three weeks prior, she was in no condition to compete.
This month she was all in, and we both loved it. It is such a treat to watch her when she gives it everything she’s got. It’s an even bigger treat when she takes 4 seconds off the 100 free and 1.5 seconds off the 50 fly.
Winning.
The conversation on my end for the long afternoon of waiting was pleasant and easy. A bunch of overheated parents held captive together, all sharing a common hope that their children swim their best. Meghan talked comfortably with her peers, easily passing the time between events.
There are goals, qualifying times in her brain, but today she was pleased by her success and so was I. She may reach these times this season. She may reach them next season. But, we agreed that it doesn’t matter as much as her continued progress. And I was able to tell her how proud I am that she persists. Through 5 knee surgeries, through thyroid numbers that would level the strongest among us, through chronic pain – quitting is not in her vocabulary. This is the focus she will take with her for the rest of her days. This is the attitude, this “I CAN do it,” is what I pray will follow her all of her days, through all aspects of her life.
Winning.
This week she got a part she wanted in the play she’s been working on in after school drama. She was patient. Persistent. She calls drama “fun,” and the students, “funny.” She never acted before. Except for every day when she “acts” like a pain-free “regular” 11-year-old. She’s thrilled.
Winning.
The marking period ends this week I think. Her averages on the “Pupil Path” app impress me. And I was a pretty good student. I don’t check her homework, or really bother her about anything. “I’ve got it, Mom.” And the numbers tell the same story. All those years of working together on good study habits paid off.
Winning.
The fund-raiser, “Jeans for Rare Genes,” is taking off. And we haven’t seen anything yet. People are reaching out. They are coming to the event, donating raffle baskets, making monetary donations, and offering their time and energy. Local businesses have been extraordinarily supportive. Meghan had seen the best in so many people. She knows her life matters. Her story matters. Her drive is being rewarded. Her big heart is teaching her to dream bigger, and help more people.
Winning.
We lost our Allie Girl, our 11-year-old rescue in December. She was with us 7 and a half great years. We miss her. All of us, especially her Dad and her “furry” sister Lucky. Felix approached me about rescuing another dog. I thought it might be too soon. He reminded me that Allie had a good life because we rescued her. He felt strongly we could be that same kind of help to another dog, and by doing so we would honor Allie, and help Lucky’s loneliness. I told him I was open – but no puppies. I wanted to know we were saving a dog. I wanted a dog no one else wanted. That made sense to me.
Sweet April showed up on a web site Felix was following. A three-year-old lab mix with an uncertain history, rescued from a high kill shelter in Florida. She was being fostered in Pennsylvania. “It’s all in the eyes,” Felix said.
We put in an inquiry, and left an application with references.
The Email said she was going to be in Brooklyn Tuesday night. Could we come and see her? And if everything went well and she and Lucky got along, would we consider taking her?
TUESDAY? Who takes a new dog on a Tuesday?
Apparently we do.
April arrived at our home around 7:30 PM Tuesday, after a brief visit to Petsmart for a new collar, and to meet GiGi and Pop!
We had to get her in, fed, settled and all of us off to bed within a few brief hours.
She found her spot. And Meghan has slept better this week than she has in years.
WINNING!
Lucky has developed arthritis in her knee, and a visit to the vet Weds. with both dogs in tow was very emotional for me. April checked out as healthy and strong. And my Lucky had her very first blood test. I am happy to report she is healthy as can be. I left with a script for anti-inflammatory medicine for her. She’s going to need it to keep up with her little sister.
And somewhere I can imagine Allie smiling in Heaven, as Lucky is the recipient of the playful nips she used to give so frequently.
The sight of two tails wagging again was good for us all.
WINNING!
Twelve Surgeries in 11 Years: Living With Cowden’s Syndrome
http://blog.silive.com/gracelyns_chronicles/2015/01/twelve_surgeries_in_11_years_l.html
The content of the article is pasted below. Please click on the link above to read the story in full effect. The photos were added below as reflection by me!
This article appeared in our local paper. Dr. Santos did an outstanding job capturing Meghan’s essence.
By
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on January 08, 2015 at 11:00 AM, updated January 08, 2015 at 1:52 PM
Email the author | Follow on Twitter
on January 08, 2015 at 11:00 AM, updated January 08, 2015 at 1:52 PM
STATEN ISLAND, N.Y. — Meghan Ortega, a Westerleigh sixth-grader, is one of my favorite dental patients and one of my twin daughters’ dearest friends.
A graduate of PS 29, Meghan is a Principal’s Honor Roll student at Markham Intermediate School in Graniteville. She loves drama, is an avid reader, loves to swim and has a broad smile and sunny disposition.
Meghan also happens to be one of the bravest kids I know. In her 11 years, she has had 12 surgeries. Twelve. She hurts every day, but has learned pain is part of her life.
Meghan has a rare genetic disorder called Cowden’s syndrome.
Cowden’s falls under the umbrella term of PTEN hamartoma tumor syndrome. The PTEN gene, which suppresses tumor growth, malfunctions, resulting in benign and malignant tumors developing all over the body.
Approximately 30 percent of children with genetic disorders die before their fifth birthday, so Meghan is fighting for her life with preventive screenings and surgery.
As her dentist, I saw firsthand one of the oral manifestations of Cowden’s syndrome — a suspicious gingival (gum) growth — for which I referred her to an oral surgeon for biopsy and excision.
Not once did I ever hear Meghan complain.
The PTEN gene is passed on in an autosomal dominant pattern and is rare, affecting one in 200,000 people. The cancer risks are high; the lifetime breast cancer risk seems to exceed the BRCA risk, and there are significant risks for thyroid, uterine, kidney, skin, colon, and countless other malignancies.
To keep a close eye on the disease and its progression, Meghan sees doctors regularly for preventive screenings — including biopsies.
But she is just happy that she finally has a diagnosis.
When Meghan was a baby, her parents, Lori and Felix knew something was “not right.” She was chronically ill. She suffered with gastrointestinal distress well past her first birthday, and her diet had to be free of gluten, dairy, soy, dyes and preservatives. Her gallbladder was removed when she was 3 years old.
Meghan also had a lipoma taken from her back and her tonsils and adenoids removed. She had to have a complete thyroidectomy because of 19 rapidly growing abnormal nodules on her thyroid gland, three of which were deemed pre-cancerous.
The most notable of the surgical procedures for Meghan’s abnormal growths were the five she had to undergo as a result of an AVM (arteriovenous malformation) in her right knee. While AVMs are not exclusive to Cowden’s syndrome, there is an increased incidence in the population.
Recently she was hospitalized for a week because the medication that helped control the AVM in her knee caused damage to her GI tract and her esophagus.
She was taken off that medication and is healing, but the pain has returned to her knee.
It is one of the constant smaller battles she fights with side effects of the multiple medications she must take.
Meghan is often at a doctor’s office. Barely a week goes by without at least one appointment. She waits like a champion for hours on end, because she is conditioned from years of practice.
Lori, her mom, firmly believes Meghan saved her life — because of Meghan’s diagnosis, she also was tested and confirmed positive for the PTEN gene mutation. She had surgery as well, a prophylactic double mastectomy.
In a world where we often get wrapped up in trivial annoyances, Meghan is an inspiration, a reminder that in the great scheme of things, people all around us are fighting real battles.
Although Meghan has met some great friends along the way, it is often a struggle for her to relate socially to most children, who likely have been to the doctor only once a year their whole lives.
Meghan’s experience of living with Cowden’s, combined with the food issues, can be isolating for her, realizing early on that talking too much about pain to her peers can also increase the isolation: It is hard for them to relate.
So she threw herself fully into support of other children and adults who have rare diseases, like the one she and her mom share.
She worked with one charity, the Global Genes Project (www.globalgenes.org) soon after she was diagnosed.
Meghan also sought a symbol for those with multiple medical issues and what developed was beautiful: A denim ribbon, a nod to the slogan, “Hope, it’s in our Genes.”
The first year after her diagnosis, Meghan simply wanted to hand out Denim Ribbons on World Rare Disease Day. The second year, she worked with the Student Council to organize a successful fundraiser at school.
Now, Meghan has struck up a friendship with Borough President James Oddo, who has invited her to Borough Hall several times to talk about ways she can make a difference. He has become her mentor, helping her find her voice.
This year, Meghan has organized a fundraiser to be held Sunday, Feb. 15, at Nicotra’s Hilton Garden Inn in Bloomfield, to raise awareness and money for rare diseases. To help others like her, many worse off.
Her goal is to educate everyone about rare diseases in general. She is acutely aware that everyone struggles, but wishes there would be less judgment and more support. One of her pet peeves is people who say, “You don’t look sick.”
For more information about Meghan’s journey and to support her fundraiser, please visit her blog, http://www.beatingcowdens.com Tickets can be purchased at http://www.eventbrite.com.
… some rain must fall.
Last summer we invested in a new roof for the house. I’ve never regretted it. Truth be told we had no choice. There were leaks and dry rot. All sorts of potentially serious places for significant damage. Lots of horrendous storms have pounded down on this roof since the summer of 2013 – both literally and figuratively. But we’ve stayed safe and dry. I have to figure its some combination of strong plywood, and a well done roofing job, coupled with our strong family bond, deep faith, and our ability to keep laughing.
The weather forecast this week is pretty awful. And I started thinking about how, “into every life some rain must fall.” And I started to wonder, whether maybe we’ve actually had enough rain.
Cowden’s Syndrome brings its own share of cloudy, overcast, generally awful days. And life, well it can get dicey and complicated even without Cowden’s Syndrome. This year has been wild. Full of so much sadness, and hurt, and sorrow. And in between there peeked in some fun, happy times.
This month has been tricky.
These last 2 weeks….
I’m really starting to think it might be time to consider an ark. I’m not wallowing. Nor do I think we are the only ones buried enough to need that ark (we’ll share,) but wow. Just, wow…
Two weeks ago tonight we rushed Meghan to Lenox Hill Hospital for emergency surgery on the AVM in her right knee. The 50 ccs of blood were removed from the knee-joint, and by Wednesday we were sent on our way. Thanksgiving weekend was spent home. Low key. Leg up. Resting.
We had goals. All geared towards December 8th. Goals set by the medical team. Swim practice was to begin again tonight. And Mom, FYI – goals are different from plans… 🙂
We slowly weaned off the crutches, and the pain medicine. We moved to an ace wrap as needed. By last Monday the 1st she went to school still in pain, but unassisted. The swelling was going down. The healing had begun.
But by Friday she couldn’t do it. Had to stay home because of the pain. The swelling looked a little off too. More rest.
Sunday she woke up late and come down the stairs declaring the pain was worse – and “different.” The knee looked horrendous. And very similar to its pre-op state. More resting. Some pictures. Some brainstorming.
All the while Allie, our oldest dog was having troubles of her own. Allie, lethargic for a bit – collapsed on a walk. Felix called me to pick him up carrying 70 pounds of dog. Off to the vet for abdominal x-rays and a negative test for pancreatitis. There was no discrete mass of the x-ray, just some shadowing. They decided to try to treat for pancreatitis despite the negative test. There aren’t too many other good options and I am worried.
And so we got medicine for Allie, and got her boiled chicken and rice for her bland diet.
And we took pictures of Meghan’s leg and elevated the knee.
Today we got up early to give Allie her medicine together.
Then Meghan dragged her painful, aching leg around school until I could get us an appointment.
1:30 arrival at Lenox Hill. Sonogram initially showed no blood. Then, wait for it…. there it is. But no obvious spot its coming from. Shocking really. Could it be residual from the procedure two weeks ago? It looked to be about 5ccs. Nothing compared to the 50, but I remember a time less than 5ccs of blood in the knee-joint freaked them all out. Now all of a sudden – we’ll just wait and see.
They used words like “discomfort,” and “irritating.” She used words like, “excruciating.”
Not the first time we haven’t seen eye to eye. But he’s all we’ve got. One of very few doctors in the north-east to operate on these in kids.
I get not racing back in. I do. But validate the kid for the love…. I know she’s super sensitive, but that just means she feels EVERYTHING, INCLUDING the stray blood in her knee.
Wrap it. Elevate it. Put swim off another week. (Tough talk from the guy who initially said she wouldn’t even need crutches.)
In the car Meghan told me to get my Christmas shopping done. Just in case. She hopes she’d wrong – but it doesn’t feel right.
My money’s on her- and it’s a bet I hope to lose.
Allie, she’s super mushy. Who knows?
Online shopping here I come.
I’m done with the rain. Really over it. Rainbow anyone?
Gratitude
Gratitude.
It’s always a good time to be grateful. Especially Thanksgiving week with catastrophe averted. Even full of memories from a year ago, I feel gratitude.
Just a week ago I wrote a post called “Plot Twist”
https://beatingcowdens.com/2014/11/17/plot-twist/
where I mentioned the AVM in the knee was starting to become a problem.
One day I will learn to trust instincts. I will look back on signs and think – I should have seen that coming. But, for now I remain a bit of a slow learner.
See, in May when we ended up with the gastritis mess, there were warning signs. For days prior she spoke of the “fire” in her throat. Of this general feeling of being unsettled. And then everything broke down.
Monday was not the first time in recent weeks she had complained about the knee.
In August, about three months after we stopped the Celebrex, there were signs. Subtle signs. We went for the MRI. We went for the visit. The doctor saw “something,” evidence the AVM was still “live.” He told her to wait until there was pain, and then come see him. Our appointment was for December 1.
The pain has been progressive. But, right or wrong, having a rare disease, and living with a child who has one too, I often have on my “suck it up and let’s go” personality.
“Mom, my knee hurts. I think it’s swollen.”
“Yes. it’s a little swollen, but mine is too. You’ll be ok.”
“Mom, my leg is throbbing. I can feel it pulsing.”
“Mine does that too – here, feel. Now let’s go – we have to get to school”
Ok, so looking back, perhaps these are not normal conversations. I am in consultation with a vascular surgeon to address the messiest of my leg issues – as soon as I can fit it in. Maybe most parents would have been more bothered. I mean I WAS bothered. But, if I stopped every time – goodness, we’d never even get out of the house. If I addressed every pain – I’d give this disease more power than I’d like it to have.
So for now, we “suck it up” together. Different. But the same.
We talk about other people’s pain. We wonder about different types of pain. We think about what it would be like if the pain could be fixed. We wonder about kids who use pain as an excuse. We acknowledge that you can never know what goes on in someone else’s body.
So we adopted positive thinking and visualization. She drew a smiley face on that knee to convince herself she could get through it. And she pressed on.
Sunday, while I was in Vermont, she was at a swim clinic. And Monday, she finished an hour and change of practice. Walked past me smiling. Walked out of the locker room and basically fell to the floor.
I did some more of my “suck it up” talking, as my heart sank. This was the real deal, but we were too far from the car. Everything about her body language told me we were in trouble. I finally, by Grace alone got her into the car, and headed immediately to urgi care. We lasted about 10 minutes there before we were booted to an ER. The leg was getting frighteningly larger by the moment.
My gut. My instincts told me to go to the knee surgeon. So we threw a bag together and got to Lenox Hill Hospital on 77th street.
After I got them to page her doctor, we immediately were notified we’d be admitted.
When we got to the room at 4:30 AM the tell-tale “NPO” (nothing by mouth – for any surgery rookies) was on the door. Can’t knock the kids timing. I knew he operates Tuesdays.
The team arrived mid morning to assess. They set her up for 1 PM surgery.
“That’s blood. And it has to be taken care of now.”
Ok – show me where to sign.
Blood and joints don’t mix. Not without consequences. This I know from experience with this child.
Get it out.
And as I waited… that awful waiting time… my mind wandered. I thought about her swimming, and the time she is trying so hard to beat. I thought about how much harder she’ll need to work to get it back together. I thought about it being unfair. And I thought about a mom in California whose extended hours on the phone to me as we were panicking and newly diagnosed were of such solace. I though of the hell her girl has gone through. Over and over. Then I thought about my internet friends in Australia. One young lady who had her thyroid removed AGAIN. Yep – two partials, and then one side GREW BACK. Unfair. Then the ultimate lesson in unfair in the countless brain surgeries, 10, 12 hours at a clip for a young woman with a similar vascular condition to Meghan in a much more dangerous place. I thought about her life on hold. I thought about her recent surgery derailed as they discovered multinodular goiter on the thyroid. I wished I could have tea with them. Right then. To talk to someone who does this. This hospital thing. This surgery thing. Like its their job. Cause that’s just what we do.
And there are no contests. No one has to have it worse. No one makes you feel like it’s not important. This just is our life. This is life with Cowden’s Syndrome. Beat it. So it doesn’t beat you.
And when they came to get me, to tell me she was in recovery, they told me they drained 50ccs of blood out of that knee-joint. Apparently there was a hole about the size of a pea. It got plugged. A fast flow leak. They hope that’s all of it.
Flashback to 2012. Last surgery, when the doctor was so unsettled that there was ANY blood in the knee-joint that he told us about the damage it could cause and sent us to Boston for a consult with a doctor who could scope the knee-joint. And we went. But we never went back. Things got better. We started Celebrex a month after that surgery in 2012. That was number 4. Number 5 was yesterday.
In 6 weeks we’ll go back for post-op. We’ll talk about whether things are better. There is someone in New York, on his team, doing that scope now – if she needs it.
In 6 weeks I hope she’s kicking some serious butt in the pool. I hope this is a memory. An update in the growing medical file.
This is life. This is life with Cowden’s Syndrome. This is our life.
Everyone has something. And yes, it could be worse. But right now, at this moment – we are tired. And that’s OK too. I am emotional, remembering a year ago today we admitted my Dad to the VA hospital that he would never leave.
Thanksgiving will be quiet tomorrow. Just the three of us. And reflective. This week is going to be wracked with emotion.
For tomorrow, I’ll take the fact that my husband makes a mean turkey and a fantastic Gluten Free stuffing as a win.
The little things ARE the big things. We ARE BEATING COWDENS!
Kid of Achievement!
Today I turned 41. And while I am incredibly grateful for the gift of life, and for “More Birthdays,” as the American Cancer Society once put it, my birthday holds all sorts of emotional challenges for me.
I have a memory for dates. And seasons. And events. And people. Especially people I love a lot. And 23 years ago on this November day, my beautiful 6 year old cousin Meghan was invited to dance with the angels. Childhood Leukemia weakened her body so, that she was not to stay here physically. Yet on my 18th birthday I got the gift of the most spectacular guardian angel – and her name and her spirit live on in my girl. Even with all the good, the day messes with me. I tried explaining it to my Meghan last night, and the best I could give her was – 23 years become 23 days sometimes. The pain just gets a whole lot more fresh.
And Grandma, Dad’s Mom got her wings just a few weeks ago. After 88 years and a life well-lived, it was still tough to see her go. Not even a year since Dad…
And last November 12th, on my 40th, my Dad was in the middle of what was to be the fight of his life. We spent it together. An unsavory appointment, and some legal crap I wish never had to be.
And this year a dear, compassionate, kind-hearted, fun-loving relative sits, so close to the end of his life here on earth. My heart just gets full.
So, it came as a pleasant surprise last week when my cell phone rang and it was Gina from the Staten Island Children’s Museum, telling me that Meghan had been selected as one of this year’s “Kid of Achievement” honorees, for her advocacy work in the community. The luncheon was to be held on November 12th.
“Of course we’ll be there.” And I couldn’t wait to share the news with her.
We kept kind of quiet while she prepared her speech, and I sent her to school this morning with her backpack and her speech and a pretty dress. Quite a swap from her typical sweats.
We arrived at the Hilton Garden at 11:15, sized up the room that we will be in for our fundraiser on February 15, 2015, and checked out the raffles. We met the other honoree, a lovely young woman being honored for her work with Project Homefront. The tables filled in and the event began.
When Meghan was introduced for this award, her advocacy was the focus. Her nominee(s) knew her history. They knew of her work, and her goals.
She delivered this speech with incredible poise.
When my mom got the call that I received this award, I was thrilled. All of my advocacy began with me wanting to make a difference. I am so honored, and humbled to realize that I am.
I was diagnosed in 2011 with a rare genetic disorder called Cowden’s Syndrome. It affects 1 in 200,000 people and it starts from a broken PTEN gene. The PTEN gene is the tumor suppressor. The PTEN gene prevents benign and cancerous tumors, but since mine is broken I have a higher chance of getting these things.
My Mom was diagnosed weeks after me. A few months after that she was diagnosed with early stage breast cancer. She had some pink ribbons around the house, and she got a pink ribbon Pandora necklace.
I knew about the gold ribbon for childhood cancer, and the puzzle piece for autism. I knew there were many others, and that all these disorders had a symbol, and with a symbol comes a voice. I had many medical issues, and went to the doctor all the time. I knew there had to be symbol for people/kids like me; kids who’ve had eleven surgeries in eleven years, kids who’ve had countless tests and are treated like human pincushions. Imagine, all this happens to prevent cancer. There is no simple solution, only a constant set of routine poking, prodding, tests, surgeries and more!
We kept looking for a symbol. We found one when we came across the Global Genes Project. They stand for all rare and genetic disorders, their symbol is the denim ribbon, and their slogan is “Hope, it’s in our genes.” But, there was not a necklace, no jewelry. There was nothing to wear to help me show people, and tell the world about genetic disorders.
I asked my parents if we could get something made, and we did. My parents found a compassionate and caring jeweler who created the mold for the necklace I am wearing today. We reached out to the Global Genes Project again and again, in hopes they would sell the necklace too. Recently, they put a similar necklace on their market, and I can’t wait for it to become as popular as some of the popular pieces I have come to know.
Rare and genetic diseases are out there. Most are very rare, but there are over 7,000 of them. More work needs to be done individually and collectively, to get them the funding they need
In 2013, just about 18 months after our diagnoses, we celebrated “Rare Disease Day” which is February 29th – the rarest day- or February 28th on non-leap years, by handing out denim ribbons at our schools. We had assemblies, and I got to talk to my peers about what it was like to live with a rare disease every day.
I have had 4 knee surgeries for a vascular malformation in my right knee. I have a good deal of pain in my body, there, and pretty much all over. Some days I feel great, and other days I can’t get too far. One day in the spring of 2013, my mom was pushing me in a wheelchair to an appointment. I was annoyed by the number of people staring at me and talking about me. I heard things like, “lazy,” and “she’s not sick.” I decided I could be angry, or I could do something. While I definitely spent some time through the years being angry at some of the things – like running- that Cowden’s had taken from me, I decided instead I was going to DO something.
That night my Dad helped me design a business card that very briefly explains Cowden’s Syndrome. I have handed out hundreds to those who stare, and to those who just care. I like to spread the word, one card at a time.
This year, right before Rare Disease Day in February, I had my thyroid removed. Thyroid cancer is very common in young people with Cowden’s Syndrome. My thyroid had been watched since my diagnosis, and it went from having 4 nodules in 2011 to 16 nodules and 3 precancerous tumors in 2014. I was fortunate, but the surgery was rotten, and it has been hard getting the medicine quite right. I have been called a “Previvor,” which is someone who has an organ removed before the genetic cancer that is looming has a chance to strike.
This year, for Rare Disease Day, I decided to raise some money. We sold T-Shirts at my school and we had a fundraiser. The money all went to the Global Genes Project, and it felt really good.
At my old school, in February, I also met the Borough President. He took such an interest in my story, he made me feel awesome. I have visited Borough Hall a few times, and love talking with him. He has encouraged me to keep dreaming bigger and I will.
Two weeks ago my Mom and I signed a contract with the Hilton for a fund raising breakfast on February 15, 2015. We will be raising money for the Global Genes Project, and the PTEN foundation. The PTEN foundation is a new organization, working just for PTEN disorders like Cowden’s Syndrome. We hope to have raffles, and T shirts for sale. We plan to have music and fin.
We set up ticket sales through eventbrite, and we called it “Beating Cowden’s First Annual Jeans for Rare Jeans Fundraiser.” Sales are open to anyone who wants to come support two great causes.
I am on a mission to spread awareness and raise funds for diseases people know too little about. I will not be satisfied until each of them has the recognition they need, and the cure they deserve.
Thank you again for this award, and for encouraging me to continue my mission.
Here is a video of her speech.
And when she was met with a standing ovation there were tears in my eyes. Tears of pride.
One after another people approached her, and complimented her.
Not a single one would have known the strength it took for her to walk in the room today. The pain was unbearable. But she did it. With grace and a smile.
And in addition to the compliments, there were offers to help. Real, genuine offers.
We will Email some of our new friends tonight. And with their help, in February we will blow this fund raiser out of the water.
Kid of Achievement indeed.
World, you haven’t seen anything yet!
Here’s the link to our local paper….
http://www.silive.com/westshore/index.ssf/2014/11/staten_island_childrens_museum.html#incart_river
And while you’re at it – book your tickets for February 15th!
Life begins… at the edge of your comfort zone…
Roller Coasters
Nope, not us. No way. No how. Terrifying. Not going to happen.
Until last week.
Something clicked inside her head, and she decided that she had come to conquer.
There was a pit in my stomach when she first declared she was going to go on Space Mountain. Roller Coasters have never been my thing either.
But, she even decided who was going to sit in front of her and behind her. No getting out of it for me.
She told me that she had been through a lot in her life. And that she shouldn’t be scared of a ride. True. There was that quote by Eleanor Roosevelt we had read, and referred to so many times.
No not the other quote, “The only thing we have to fear is fear itself.” – FDR
This one, “You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I have lived through this horror. I can take the next thing that comes along.’ You must do the thing you think you cannot do.” – Eleanor Roosevelt
The first time we were both a little scared. Then there was the second time. And by the third time she owned it.
“Rocking Roller Coaster!” she declared.
And so we headed to the Aerosmith ride that wasn’t even on the consideration list a year ago. Twice. I went too. And I really didn’t mind.
“Life begins at the edge of your comfort zone…” Words I am learning to be truer each day.
And so in the week that was, we rode Space Mountain, Aerosmith, Big Thunder Mountain, Seven Dwarfs Mine Train, Test Track and even the Barn Stormer together. I did Star Tours too, but virtual reality isn’t really agreeing with me anymore. Maybe too much reality?
So she went on Mission Space with her Dad – twice. Once on the beginner level, then on the advanced. And they rode Splash Mountain too – just because.
It makes me happy to see her conquering fears. There are so few of them, that I am hopeful nothing like a roller coaster ever stands in her way.
And as I reflected on the idea that this kid, this amazing kid had brought me past a fear that had plagued me for decades, I found myself hopeful that she will always dance…
“Never settle for the path of least resistance… I hope you dance…”
“I Hope You Dance” – Lee Ann Womack
I hope you never lose your sense of wonder,
You get your fill to eat but always keep that hunger,
May you never take one single breath for granted,
GOD forbid love ever leave you empty handed,
I hope you still feel small when you stand beside the ocean,
Whenever one door closes I hope one more opens,
Promise me that you’ll give faith a fighting chance,
And when you get the choice to sit it out or dance.I hope you dance….I hope you dance.
You get your fill to eat but always keep that hunger,
May you never take one single breath for granted,
GOD forbid love ever leave you empty handed,
I hope you still feel small when you stand beside the ocean,
Whenever one door closes I hope one more opens,
Promise me that you’ll give faith a fighting chance,
And when you get the choice to sit it out or dance.I hope you dance….I hope you dance.
“It is only with the heart that one can see rightly…”
There is something about having a kid who struggles, whether physically, mentally, emotionally, or in any other capacity, that forces you to open your heart and mind to things you may never have “seen” otherwise.
We are blessed.
We have a beautiful, witty, articulate, charismatic and spunky young lady.
She knows pain, and she knows it well. And some days that pain is like plowing through a stone wall, while others its like walking across a pebbly yard barefoot. But, there is sparsely a day with no pain.
She knows competitiveness. Although she would like to be the fastest runner, she is starting to work towards a more reasonable goal in a no impact zone – the pool.
She knows intelligence that book smart children know, and she knows the perspective that few adults can master. She can look at other people and want to talk to them. She can wonder about them. She can empathize with them.
She knows what its like to be sick. And in surgery. With IVs, and needles, and scars, and recoveries. She knows what it’s like to never be “well” only watched.
She is learning, step by step, that “well” is more of a state of mind, than a state of being, when each week is peppered with some type of appointment.
Yet, she knows that even at the depths of her own Cowden’s Syndrome battles, there are others. With and without our syndrome – who fight a battle unbeknownst to us.
Meghan doesn’t use a wheelchair at home. For this I am grateful. Although as I teach my daughter about homelessness, and how we can never be too sure from where they came, or whether it could through a series of unfortunate events, become us. We practice a deep understanding of reality in Disney World.
Meghan’s pain, so much of it, stems from repetitive motion. Too much walking, any running, too many stairs, too much kicking or pulling in the pool… all of it has repercussions. So Disney, by it’s very nature, and its wide landscapes requires much walking. And, as we try every year, even with a little here and there – the pain is deep and inevitable.
So for that week every summer she gains an even greater perspective. She lives in a wheelchair. With all the inconveniences that come along with it, in an effort to save the needs from irreparable pain, and the trip from being a wipeout…she rides.
And on the first night after the vomiting I watched from a distance, as Felix helped her onto the handicapped ramp on the bus. And there was a knot in my stomach as I watched my girl get strapped into the bus in the wheelchair. This beast, this Cowden’s Syndrome we fight. Well we fight to win. But who can know?
I stop myself from wondering too far ahead and I reflect. On the old me. The me who used to look at people in wheelchairs riding buses as an inconvenience. A delay in my precious time. The me who used to judge and try to guess why they would need a wheelchair. The same me who used to judge a lot of things.
We will unpack.
The wheelchair will be stored. Hopefully for a very long time. But, it will be there, in the basement. In case. In case we need it for anything. Because the pain, well it’s always there.
Fortunately, she is in a position where her stubbornness still has the power.
And I will think, as I drive her back to swim practice in a few weeks, about the other mothers. About the ones who wish their child’s wheelchair use was temporary.
And I will think about the phone call I got this week. The one about the AVM growing in the knee again. Timed on the same day she was vomiting in the hotel room. And I will be grateful that we don’t need surgery right now. And I will be grateful that it is not in her head, or any other life threatening spot.
I am humbled.
By her grit. By her stamina. By her determination.
I am grateful.
For the opportunities afforded to my girl.
We will find the balance. We will pay it forward.
I don’t even really remember the judgmental me.
I am too busy working on
BEATINGCOWDENS!
Avocado and Isagenix – What’s in YOUR suitcase?
It’s been almost two weeks – a long time for me not to write. My head is spinning with things I need to get out in my blogging “therapy” sessions.
As I sit in Orlando International Airport, delayed by hours on the sunniest evening all week, I find myself reflecting on the week that was.
Even though we have been at Disney 7 years in a row, and even though we probably should have stayed home to lick our wounds this year, we threw caution in the wind and decided there would be plenty of time to make money, and time to make memories isn’t always there.
Plus, in 2014 alone there was that thyroidectomy in February that threw my girl’s body into some wild unbalanced state, and that week in May when we learned all about gastritis. (Caused by the pain medicine she had lived on for years.) So after spending months trying to get her stomach back in balance, and juggling the gluten, dairy, soy free, and largely preservative free diet, with the new restrictions of no citrus, no chocolate, no tomato, we contemplated cancelling the trip. But we knew that would seem more like a punishment than a precaution. So the reservation held – August 5 -12.
In the week leading up to the trip time seemed to fly by. I barely got her settled with enough clothes, got us a functional suitcase, and got us packed in time. And as we were packing I began to gather food. See, when you travel with a kid with food allergies, you don’t travel without food – ever. Even though Disney is “the happiest place on earth,” and even though almost every chef we encounter is masterful at creating meals to please her very restricted palate, you still need to pack the “staples.” There has to be a supply of dry fruit, cereal, pretzels, applesauce, cookies, and bars. In the past we also always packed tomato, and barbecue sauce too. Every morning we would fill small containers and have it to flavor anything dry along the way. Except this year tomato was equal to painful reflux, and we weren’t about to try it out as we traveled.
So, we went to the next best thing – avocado.
I have never been a huge fan, but my Puerto Rican husband gently introduced healthy protein into her diet and it was so well tolerated. She liked it to moisten food, and there were plenty of days she ate a whole one. So, into the suitcase went a container full of 8 avocados.
Use what you know.
And in another container nearby were several packages of Isagenix shakes. Those, I had packed with intention of using them myself. So glad I did.
When we arrived in Orlando Tuesday the 5th after a 6 AM flight, it was 8:30. We rode the Magic Express and got to the hotel by 10:30. At 10:45 the luggage arrived, and by 11:20 we were unpacked and on the way to the Magic Kingdom.
And find the Magic we did.
We spent the day riding, and laughing, and watching and taking in all the wonder around us. We had lunch at a trusted favorite, the Liberty Tree Inn, and the turkey, stuffing, mashed potato and gravy were prepared to perfection. Her stomach was happy. We were happy.
Dinner was with some old friends at the Contemporary, and we willed the time away searching for “Hidden Mickeys.” The “Fab Five” greeted us, and the chef took us to the buffet. I tried to choose carefully, as the selections seemed a bit questionable. I was assured they were within her dietary restrictions. And there was the drink. We asked for it diluted, as it wasn’t her normal fare. But he was busy and I suspect by the third glass the waiter had forgotten to dilute it. And there was the GFCFSF sausage… and…
By the time we sat for the electrical parade we were all tired, but she said she felt something in her throat. She asked me for food, and even as I handed over the pretzels I should have known better.
She slept fitfully. So much so that I kept waking to check on her.
“New room… new place.” I kept telling myself…
And in the morning when we got up to leave we just about made it to the lobby when she said she couldn’t go.
“Houston… we have a problem.”
We exchanged those “uh-oh” glances – Felix and I. And we followed her to the room.
And barely did she make it in the door then the familiar violent vomiting from May returned. So much. So forceful. Like her body was not going to stop until it got rid of every single offending morsel in her body – whatever it may be.
It went on for hours in our hotel room in Walt Disney World. And every time it seemed to calm and we tried water, bread, pretzels… it all began again.
We called our GI from home who instructed rest. And we looked at our girl laying so still and so sick on the bed, and we searched out the travel insurance brochure. After two hours on the phone with more people than I care to count, we arranged for a doctor to visit the hotel.
And while we waited the staff had seen my tears, my desperation, and prepared a bag with some balloons, and coloring books, and pins and UNO cards to pass the time. There are good people.
But by then – at 5 – she had been without food or drink for 5 hours and was starting to look better.
He was amazing, and unusual, and smart, and introspective. And he sat with us for a good hour learning about Meghan. Then he sized up that she was not dehydrated.
“What do we do?”
“Go with what you know.”
Not so easy hundreds of miles from home. But, she was hungry. And there were avocados. And my eyes hurt from crying in absolute frustration that we had just breached her forever “doctor free” zone.
Then he asked what she drank and we said “Coconut Milk.” And just like that he was out the door headed to a whole foods 6 miles away. HE took money only for the milk itself, not for his gas or his time. And we had options.
WHO does that? This stranger… this “standby doctor” so moved and so interested in helping…
So there was avocado, alternating with coconut milk at very deliberate intervals. And once the avocado held itself in place we had a few options.
“Can I have a shake?” MUSIC TO MY EARS…
A half shake in 8 ounces of coconut milk. Followed by a half of an Isagenix meal bar.
By 9 she was well enough for a ride around the hotel.
By the next morning we cautiously resumed our trip. With Isagenix, and an avocado in my backpack all day.
Felix said we should call her our “rubber band-” stretched until you think she’ll break, then she finds a way to spring back!
beatingcowdens 