Behind the Scenes…

Published on May 31, 2019May 31, 2019 by beatingcowdens1 Comment

We don’t post the awful pictures. We leave out the ones where we look less than our best. Social media allows us to live in the delusion that everyone’s life is “perfect.”

I’ll be the first to admit the ugly truth. It’s far from perfect. It’s not neat or clean. There is no bow. And yes, most of the time I do delete the awful ones. Those images and experiences are seared into my soul.

I prefer to go with the theory that the body forgets pain… At least your own. It’s how we survive. But, if you live watching a loved one in pain – you know the memory will not slip even a tiny bit. If you hold your child as they cry out in pure agony, or when they are weak from fever, you can remember where you were each time. If you watch your teen wince simply through a series of steps, or check to make sure they are breathing as they sleep the better part of two or three days at a clip – you don’t forget.

Recently, Meghan was in a production of “Beauty and the Beast Jr.” with the Staten Island Children’s Theater Association, Inc. She loves the experience of working with a theater group and has been with this one a few years now. It is such an enjoyable time in her life. She spends months of Saturdays with genuine quality people preparing for the show.

And during those same months she is thriving academically.

And training for swimming.

And making regular appointments, routine, follow-up, and therapy.

And contending with seasonal allergies that are nothing less than relentless.

And, she is, every single day a person living with Cowden’s Syndrome and the effects it has on her, both physically and emotionally.

The show was almost 2 weeks ago. It took me a little bit to get my thoughts together.

I think I have it now.

Living with chronic illness, chronic pain, chronic life altering physical ailments, is in some ways similar to putting on a production.

You set your sights on what you want to accomplish – large or small. In some cases it’s going to a party, and in other’s it’s going to the backyard. But, you plan for it. You practice it. You consider every detail. You may have to select the right costume and even stage it so you don’t sit or stand for too long. You know just what your body can do and there is a short window where you have to make it all work.

The rest of the time you are backstage.

You are in pin curls and shorts with a tank top.

You are rubbing your feet. You don’t have make-up. Backstage and rehearsals, these are what life is made of. But, we don’t take the camera out while we are there.

Everyone’s preparation is different. I can only write about ours and confidently say everyone has some level of preparation before the “show”. Some people make it onto the stage more often than others. Some people have fewer performances, but make them count as much as they can. Those people take nothing for granted because they have no idea when they will step out into the “stage” again.

That’s what social media looks like to me, anyway. Every picture is on the stage. Some have more than others. But, because of the world we live in it is easy to judge based on what we see without considering what we DON’T see.

The night of the show Meghan went to the diner with her friends. She got home close to midnight. It was Sunday, and a school night, and I had already decided she’d stay home the next day. It wasn’t a reward. It was a necessity. The amount of energy her body had expended could not be recovered quickly. She slept until 2pm the next day, and was asleep again by 9.

I sent her to school that Tuesday – ready to roll. She swam at 5am, did a full day of school, an hour of physical therapy and another 2.5 hours of swim practice.

Probably not the best plan.

The physical therapy is in place to try to strengthen her overall. Joint laxity, ligaments subluxing… all sorts of cracking, popping and shifting. The search for answers is on, but in the mean time we do PT…

By Wednesday she couldn’t move. She made it to school – barely.

Her IEP meeting was that afternoon, and we had lengthy conversations about all sorts of physical and emotional needs relating to school. We also spoke at length about the service dog we are in a holding pattern waiting for, and how he will fit in to the big picture. So many questions…

Thursday we got in the car to go to school. By 7:30 I had her back in her bed. She just could not. She slept until early afternoon Thursday, followed it with and early bedtime and slept again until early afternoon Friday. There was a little less sleep as the days went on but it was a slow process.

The show that was so incredibly worth it in every way – cost her a full week in recovery time. Her body hurt so deeply. This is not an out of shape child. This is a person living with a chronic pain and illness that is affecting her body in ways not even the doctors fully comprehend yet.

But I didn’t post pictures of her wincing in agony, or sleeping for days.

To the outside world she doesn’t look sick. She’s 5 foot 8, full of muscle and extremely well-rounded.

She works hard at it.

Some days are easier than others. But every day she works. She is fierce and relentless and she does not quit.

Next time you catch a photo of her smiling or singing in a pretty dress know that it took a lot of staging to pull that off, and there will likely be a lot of recovery on the back end.

But, she wouldn’t have it any other way. Not for a moment. She is my inspiration to remain…

#beatingcowdens

Double Edged Sword

Published on August 24, 2018August 24, 2018 by beatingcowdens2 Comments

I remember as a young girl, and even a teenager, having the phone pretty much attached to my ear all the time. I remember being so excited when we got a cord long enough for me to bring the phone into my room. I remember calling people, and being so frustrated at busy signals. I don’t remember much of what I talked about for all those hours, but I liked it.

When I went to college, I went with an electronic typewriter with a 4 line display. It was state of the art. In my dorm there were computers in the common area and people were just beginning to really Email. There were no cell phones. We knocked on each other’s doors and spread word through friends when we were getting together.

It’s now been 23 years since I graduated from college. I’m coming to understand the generations before me. Perhaps some of the discontent with things changing was a foreboding sense of where it was leading.

I don’t go far without a cell phone in hand. I “google” like it is my full-time job. I’d rather text than call, and I am guilty of putting only the “perfect” images on my social media accounts. I “keep in touch” through photos of friends children. Some of these children are teenagers now. Many of them I have never even met.

I wish “Happy Birthday” on Facebook after it reminds me, and rarely send a card. I delude myself into feeling “in touch” when really we’ve lost all track of each other.

I’m watching a generation grow that thinks its acceptable to post all kinds of photos of themselves, inevitably trying to look older than they are, in a forum where nothing is truly private at all.

I’m not saying we had it all correct by any means. I was guilty as the next of trying to impress “popular” kids, or to fit in. There were mean kids. There were those who isolated. We passed notes. But, we didn’t post our comings and goings for the world to see. I was blissfully unaware of who went where, unless I was there. If we took photos it was the real deal. There were no filters.

The internet, and the social media craze that has followed is the proverbial “double-edged sword”.

Living with, and having a child with, a rare genetic disorder means I have to do most of our research here. Most doctors lack the time, the knowledge, or the desire, to entertain my instincts. I may not be a doctor, but I am an expert on Meghan. I have been able to learn through trusted medical journals and intelligent internet connections, more than I would have ever been able to learn 25 or 30 years ago.

Meghan has had medical problems since day 1, and I have had the privilege of advocating for her since then. I have “met” parents through online support groups, and have soaked up their advice like a dry sponge. Parents go out of their way to help other parents, and it is a community like no other. Without the internet I would have been traveling this journey largely alone.

There were multiple diagnoses before the PTEN Hamartoma Tumor Syndrome (Cowden’s Syndrome) diagnosis in 2011. And, truth be told, I suspect there are still a few more coming our way. During each step of the journey I have been able to connect with medical professionals and parents in ways that leave me forever grateful.

I am skilled at dealing with the insurance companies, the mail order pharmacy, and the collection agencies. I am on-line so often, printing medical explanations of benefits, or fighting for treatment courses that I know are necessary.

I have become well versed in the laws surrounding Individualized Education Plans, (IEPs) and have secured necessary accommodations for an honor student battling PTSD largely from the fallout of a rare genetic disorder.

We fund raise for the PTEN Foundation, in hopes of one day soon allowing a patient powered registry that can lead us to treatment, and maybe even a cure.

All of this is possible through social media and the internet.

These are the same forums that allow people to think they are “in touch” without ever hearing each other speak. These are the same forums that allow teens and adults alike to think it is ok to be insufferable or mean because they don’t have to look the other person in the eye while they do it. It is these same forums that claim to bring us all together, that are causing what I fear is irreparable social damage. A generation of children who aspire to impossible ideals and feel they are not good enough, are growing up. They have the world at their fingertips. Will they have the skills to access it through human interaction?

I don’t know what it is like to live anyone else’s life. Maybe there are similarities, or maybe my views are odd. I blog to give an honest account of life in this house, with these challenges, because I too have found comfort in knowing I am not alone. At least theoretically.

I am always busy. Sometimes I don’t choose it, and sometimes I choose it without realizing it. I am so used to being in motion, not having a full agenda is confusing. It is also very very rare. My only speeds are “go” and “off”.

Chronic illness can easily run your life. When every ounce of strength must be used to create the illusion of normalcy, there is not much time to be “normal”. When you can not predict the health crises that exist daily, or the new ones that crop up at a moment’s notice, it is hard to make plans to do much.

We are a family of 3. My child is an only child. She has all the benefits, and all the downfalls of that status. We have extended family. I have friends. Long time friends. Old friends. I know I could rely on them if it became time to wave the white flag. But they are busy too. And our time will come in a few short years when our children are off on their own.

My child does not have a built-in network. My child has PTSD, and incredible anxiety. She can sometimes have an abrasive personality. But, she has more integrity and compassion in her than just about any other human I know. You can’t pick any of that up off her Instagram. Or her SnapChat. To really know her you’d have to talk to her. The old-fashioned way.

That very network that has allowed me to learn so much, to do so much, and to help so much, has also caused harm. For both of us.

For me, it represents the easy way out. Aside from a few support groups, I know people will tire quickly of hearing the same story over and over. So, it is easy to click “like,” post a few comments, and have at least a visual in my head of what’s going on. But, it also leaves me with feelings of inadequacy. Why can’t I get us to the beach? Why can’t I plan day trips with actual humans without fear of having to cancel?

For her, it is a constant reminder of a “normal” life that she doesn’t have. Whether it’s pain, medical appointments, food allergies, or anxiety, there is an isolation inherent in this world of chronic illness.

She speaks of the “Sword of Damocles” with regularity. The history channel gives this explanation History Channel- Sword of Damocles (Go ahead, and click the link. It’s a worthwhile read.) This analogy explains a life hard to comprehend, and impossible to describe.

The internet probably saved us. Social media brought me to some of the smartest parents, living variations of our life.

Social media altered the scope of human relations with consequences we will see for generations.

The irony of it all perhaps is that this message reaches you through the double-edged sword of the internet.

I’m interested in hearing your comments.

We remain

#beatingcowdens

With all it’s “side effects”

One day at a time…

Just Do Your Job

Published on March 25, 2018March 25, 2018 by beatingcowdensLeave a comment

I guess as I think about the last few weeks, so often the thought comes to mind that if people would just do their job, thoroughly and with accuracy and pride, many problems could be avoided.

This weekend I compiled a 5 page letter, and a 20 page PDF and Emailed it to the CEO and director of operations of the local hospital that I feel could have done a far better job handling my February 21 vascular surgery. It took a little time to get it out, and it was frustrating, but simultaneously cathartic.

Early in the healing process my sage daughter said, “Mom, you’d never let anyone treat my body like that. Why is it OK to treat yours that way?”

It isn’t my dear. And I know she’s always watching.

I took my notes all through the week before and after the surgery, and then I rested to see if I could get it out of my system. It lingered. So, yesterday, off it went. I told them I’d like the name of who they handed my case off to, by the close of business on Friday 3/30. There’s a post it on my desk. To be continued.

Just Do Your Job.

When I finished that letter, I wrote one to my health insurance carrier. We are fortunate enough to have two, but keeping things straight can get confusing.

Meghan met a new neurologist in December of 2017. When we went to the appointment there was no one to collect a co-pay. I figured they would bill it. Then, I forgot. The news of the finding of a “lesion” was enough to jar me out of my normal routine.

Sometime in January I received an “Explanation of Benefits” and a $35 check from my insurance carrier. This is not uncommon, as often I have co-pays refunded once an office receives the co-insurance payment.

A February MRI and neuro follow-up gave news of in fact TWO 1cm lesions, and some swelling. All of which will need to be watched. I got a bit distracted.

The check sat, with several other checks until March 8th, when I deposited them into an ATM. That was a Thursday. On March 11, I logged onto my online banking to see that the check had a “Stop Payment” and in addition to having the $35 deducted, I was charged a $12 fee.

Furious was an understatement, as I am meticulous about my banking.

Just Do Your Job.

On Monday the 12th I received a letter from Chase Bank explaining their end of the explanation of my fees. My insurance carrier told me that the doctor contacted them on February 15 to ask them to stop payment on the $35 as I had never paid the co-pay.

The doctor never billed me, just reached right to the insurance company. They later admitted never billing me. No apology. The insurance company never reached out to me. Never told me the check had been stopped. I didn’t go to the bank with the check until 3 weeks later.

Within 72 hours my bank had notified me online and by mail. My insurance company had no explanation as to why they never afforded me the same courtesy. My bank actually DID their job.

When I took it to a supervisor over the $12 fee, and my embarrassment, and my annoyance at the number of hours this was taking from my life, she offered me the standard PO Box to send my complaint.

I asked her to do better and she told me to fax the receipt of deduction to her. She said she’d expedite it. It’s been 10 business days. The formal complaint letter is written and mailed.

Just Do Your Job.

Then, there is the doctor who refuses to figure out mail order. My insurance has denied payment of the drug until it goes to mail order. Thank goodness it’s affordable. I’m paying it while simultaneously working out getting him to mail order it.

Just Do Your Job.

Tomorrow, I will make a few calls on our newest denial. I suspect it will take a few weeks to sort out, but I will win this appeal. Because, no one in an office is going to tell my that my daughter has “recovered,… and no further improvement …. is expected.” Nope. Not working for me.

Apparently they weren’t at the swim meet last weekend. The meet that her PTSD might have kept her from without a hard push, but the meet where she DESTROYED all her best times. At that meet I had proof that further improvement IS EXPECTED. Because it is happening.

Just Do Your Job.

That swim meet last weekend was 6 hard months in the making. There has been so much work in place dealing with her PTSD, her anxiety and her panic attacks. She had to make sacrifices and step away from her commitment to a local theater program. I didn’t give her much choice, even though I knew I was probably taking one opportunity at theater from her to give her another at swimming. Parenting is about making tough choices. She’ll be at all the rest of the theater practices. She had to KNOW she could get through this meet.

This event is just exhausting. She has a love/hate battle with it. Sometimes she even catches the “2Fly Flu”

The improvement from entry to finals just shows how much she needed to be there and get this out of her system. She’s got more progress in her.

It’s been a goal to go under a minute for over a year. She crushed it.

When you are 24/7/365 fighting a chronic illness, and in this case a rare disease, no value can be placed on physical strength, actual and perceived. You see there is never a moment when you are not waiting for the other shoe to drop, right on your head. So the need to be physically strong, is a NEED, not a luxury.

I sit here now, Sunday evening again, and I think of all the things I would have liked to do this weekend. I think longingly about how nice it would be, to be in Alabama at the PHTS Patient Symposium, and if not that, then to get a manicure, to catch up with old friends, or even to stop and read a book. But, I know that is not meant to be. Not right now.

For now, at this point my life, weekends are about putting out the fires that creep into the world all week. It is about uncovering the “in box” and fighting the fights that will get my daughter and myself the care we need and deserve.

I like to think it won’t always be this hard. But, if I’m honest I suspect it will be.

The trick is going to come in my figuring out how to keep it from swallowing me up. There is always going to be a fire, a battle, an appointment, or a medical drama. ALWAYS.

This weekend, I had dinner with my husband. I took a walk, AND I went to one store for fun. It’s not much, but it’s a start. It’s a process.

The battles rage on.

Vigilance is required. This journey is not for the faint of heart.

But we are establishing support from afar. We are finding each other.

As one of my groups says #WeAreCowdenStrong

And we, in this house, remain

#beatingcowdens

“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!

Time with “BOB” our favorite entertainer…

Invisible Illness – Stuck in the Middle with You

Published on July 29, 2015 by beatingcowdensLeave a comment

I don’t actually fit the “stereotype” of a middle child, as I was a younger sibling to my sister, (three years older) for 15 years, before my little sister and brother came along a few months apart.

I got the live the life of a “younger” and then later got to have some fun times, and responsibility as an “older.”

It worked.

On the other hand, this journey with this “invisible illness” we call “Cowden’s Syndrome” isn’t quite as smooth. It has to work, but right now it’s the “typical” middle child. It’s having a tough time fitting in where it belongs. Actually it is definitively trying to take over, but either getting ignored, or getting too much attention for all the wrong things.

In February of 2014 there was the complete removal of her thyroid.

In May of 2014 there was a week in the hospital from complications from the medicine that was controlling the AVM.

In November of 2014, almost on schedule, the AVM bled and required emergency surgery.

In February 2015 I addressed another vein gone awry in my leg.

In May 2015 there was the arthroscopy for the AVM knee to quartarize some bleeding.

In August, on the 25th, there will be her second-hand surgery in two years to try to stay ahead of the vascular malformations now forming in her palms. That was an unintended result of Monday’s visit to the hand surgeon.

There are a list of appointments to make, and bills to settle, and I seem to be doing nothing more than surviving.

More blood tomorrow. An Abdominal ultrasound Friday.

The summer is not for carefree adventures. The summer is for doctors. I hate that. But, its true.

And as we met with the oral surgeon today who perused her multiple page medical history, his cavalier remark, “She looks good,” should have pleased me. But, if I may be frank, it pissed me off.

Not because she doesn’t look good. She’s stunning, and tall and polite and well-mannered, and has a beautiful smile. But that is NOT the point.

The point is he never mentioned anything about the medical history, and in our world, being validated matters. Someone needs to say its unusual (read unfair) for an (almost) 12-year-old to be discussing the removal of her wisdom teeth. And while this may have nothing to do with Cowden’s (although I’ve come to know EVERYTHING unusual has SOMETHING to do with Cowden’s,) it is still just grossly unfair. More unfair is that this is ALREADY her second stint in the chair of an oral surgeon, as a mass was removed from her gums some 5 years ago.

We remain “stuck in the middle.”

Again, I have the “healthiest looking sick kid.”

My kid who still ices her knee, and needs to walk a lap or two during swim practice, but still makes practice. That kid will spend a week in a wheelchair at Disney, as she is not to walk more than about 1/2 mile consecutively. The child who still hasn’t gotten clearance from her last knee surgery. Clearly, she doesn’t “look” sick, but the stares and judgment are inevitable. And to some extent I get it. Invisible illness is hard to understand.

It is during this week I feel most “stuck in the middle.” I am so grateful the accessibility issues are limited. I do not fit in with the parents of wheelchair bound children. Although, it is a necessary tool to allow us a much-needed vacation. But, what is not limited are the “invisible” elements of her condition. The chronic surgeries, the doctor visits, the traffic, the blood work, the scans, the inability to just “go”; to the museum, the beach, the park, or anywhere because it hurts to walk too long, the isolation from friends who have no limitations, the poking, the anxiety – well, they never ever go away.

We’ve learned not to talk about them much. But, they are always there. Hers and mine.

She learns to appreciate what she can do, and acknowledge what she can’t. Begrudgingly.

My kid who holds it together through all things, and has grit and determination I marvel at, will act in her summer production at school.

She learns to use the anxiety as a tool.

She masters her emotions. She is the boss of her body. She amazes me.

And on September 18th when she gets her bottom two wisdom teeth removed, the course of action will be no different.

They will never know the powerhouse of a young lady that just left their chair. Until she comes back for the other two a few months later.

“Stuck In The Middle With You”
(originally by Stealers Wheel)

…Yes, I’m stuck in the middle with you,
And I’m wondering what it is I should do
It’s so hard to keep this smile from my face,
Losing control, and I’m all over the place
Clowns to left of me, jokers to the right,
Here I am, stuck in the middle with you…

World Rare Disease Day – Advocacy and Awareness

Published on February 27, 2015February 27, 2015 by beatingcowdensLeave a comment

World Rare Disease Day is February 28th. Although the actual day is February 29th (the rarest day…)

It is a day of raising awareness across the globe about the 7,000 rare diseases that plague 1 in 10 people.

Our fundraiser has ended for the year. Our checks have been sent. All that’s left for tomorrow is our denim ribbons and our shirts. This day is right up Meghan’s alley. Meghan, whose entire platform has become raising funds and awareness, relishes a day set aside for just that.

Although some days I suspect it would be easier to be an advocate, rather than a patient AND advocate, I ~~suspect~~ am sure that we are more effective advocates BECAUSE we are patients too.

I get that not all diseases, ailments, or medical issues are “RARE.” I also fully understand that that doesn’t make one more important than the other. It’s just that when you have a chronic illness, life is really challenging. When you have a chronic illness BECAUSE of a RARE disease, that really has NO treatment, and definitely NO cure, some days the hill seems insurmountable.

I texted my husband yesterday afternoon to let him know I was going grocery shopping. He told me I was nuts. A week post-op from vascular surgery that put 25 incisions in my right leg, he might have been right. Except he didn’t argue. Timing would not allow him to go.

Grocery shopping in my house is an endeavor. I cross a bridge, and hit not one, but two stores – miles apart before returning home after about a 4 hour round trip. It’s one of the few things easier in the winter – as I don’t have to pack ice!

Why such a journey? Meghan.

Among other things I have learned from my daughter, she has inadvertently schooled her parents on the value of nutrition. Meghan has had food “issues” since birth. Slowly we have played and peeled away and adjusted her diet to be free of Gluten, Casein, and Soy, as well as most dyes and preservatives, and highly acidic foods. She takes digestive enzymes with every meal, and a host of nutritional supplements.

She went from grossly behind in speech/ language to miles ahead. She surpassed extensive sensory issues.

I don’t cook. Ever. But, I shop. And it’s my job to make sure the tools are in place to whip up tasty meals for Meghan, and all of us. My husband never disappoints. He is creative, tasty, almost passionate about Meghan having a culinary experience she will enjoy. He is fantastic.

I shop at Wegmans. And at Whole Foods. Most things Meghan eats are organic, and by default a lot of ours is too. My grocery bill is usually about half a mortgage payment every 3 weeks by the time I feed the dogs too. It is the sole reason we don’t settle all out debt. And it is worth every penny. Nutrition is without a doubt the best investment I have made into the health of my child.

The game changer was the addition of a nutritional cleansing program I have come to trust into her diet. Felix has been using it for almost three years. Meghan and I for about 18 months.

Felix needed to lose weight. But almost as an after effect, after losing 50 pounds, he noticed he felt great. I cautiously introduced the product to Meghan in slow, low doses. Once I was clear she had no reaction, I went all in. For well over a year now she has had a protein shake for breakfast every morning, and since starting school she takes a meal bar for lunch on school days. Over 40 grams of healthy, well-digested protein a day, and this child has done nothing but grow!

Growth spurt? Maybe. But the hair, the skin, the nails, the teeth. She glows of good health. She missed her shake for 2 days a month ago. She had a tough swim and felt awful. Coincidence? Maybe. But she’s not even taking chances any more.

In my house we have a protein shake every morning, and Meghan has some organic, home-made waffles too. We don’t just trust any protein shake. Ours is high in whey protein from “happy cows” in New Zealand. And my girl who can have no dairy at all without severe pain – tolerates these like nothing.

Leaves a mom to wonder- maybe it’s not a “dairy” allergy, as much as a “what’s fed to the cows” allergy?

I could debate processed vs. natural vs. organic all day. What I have here is results.

When you are fighting a rare disease, you need to have the best food in you as possible so you can battle like a champion.

Meghan got out of swim practice tonight. She never gets out of the pool. Her coaches know that. I know that.

“It hurts Mom.”

Dropping stomach, smiling face…

She knows. All of it. Whether I say it or not. She misses nothing the doctors say, and despite my wishes they ALL talk right in front of her.

She has earned the right to sit out. Her coaches know how hard she works. She waited for starts – to get a few in before Sunday’s Silver Championship meet.

On the way to the car she told me she wasn’t sure the knee would hold till May.

I am still waiting for a call back from the orthopedist from last week. Apparently her notes are being typed. He can’t possibly speak to her case without them. He saw 65 patients the day we were there.

The knee is swollen. We will try ice. Hopefully that’s it.

“What if it’s blood?”

“What if it’s not?”

That’s kind of how the conversation went.

Truth is, neither of us know. So we will press on. We have the main plan – the one that lasts till May. And we have the back up. The one where we just yell “plot twist!” and go with whatever happens.

Why did I go grocery shopping last night? For Meghan. For her food. And so she sees me press on. Despite being hurt. Because if I don’t press on through tough times, how can I ask the same of her?

My Mom may not have a “rare disease,” but I learned stubbornness, stamina and work ethic from her.

Rare Disease Day 2015. It’s not so much about “celebrating” as it is about advocacy and awareness.

Because the under diagnosed, the underfunded, and the often ignored – matter. Very much.

We are BEATINGCOWDENS… One day at a time…

Building Bridges…

Published on June 9, 2014June 10, 2014 by beatingcowdens7 Comments

It’s been a while since I’ve written. If I have my way I’m about to get so focused that you’ll get tired of hearing from me.

Life has become a bit overwhelming. And some days all of this, this whole chronic illness thing, is just too much to handle.

There are days the path looks like this.

There are days when it is easy to wonder, “What now?” or, “What next?”

But that is the very mindset that can find us in a heap of trouble.

So we are trying to work on shifting our focus. Instead of panicking when the bottom feels like it’s falling out, we are working on reinforcing the structure.

We all need a bridge, a support system of sorts.

With two members of the house who are the 1 in 200,000 unique that comes with having a RARE Disease like Cowden’s Syndrome, it’s so easy to let the illness try to creep into your identity.

I don’t talk too much about me. Mostly because as any Mom, my needs are second to those of my girl. But, I too get overwhelmed. And when I feel like Cowden’s is trying to choke me out – it’s time to pause and reclaim.

I am more than the paperwork and medical records. I am more than the bills and prescriptions. I am more than the scheduling and the appointments. I am more than the mastectomy scars. I am more than the synthetic thyroid hormone.

I am a mom.

I am a wife.

I am a friend.

I am a Christian.

I am a teacher.

I like music. I like reading John Grisham. I enjoy Law and Order. I like to laugh. I CAN’T get by without my Isagenix, and my Ionix. I appreciate photography, and I really, really like to sleep.

And with each piece of my identity, the pieces of my foundation get stronger.

There are things I have to do as a person with Cowden’s Syndrome. There are things I have to endure. There are an unnerving amount of tests and appointments and the constant nagging notion that things may spin out on a dime. But if I am honest – isn’t that what life really is – for everyone? While the issues may not always be medical, the reality is that despite our best efforts, we have no control. So, we do “the best we can with what we have where we are.”

And as I get my foundation in place. As my stones are strategically placed – so they can be stepping stones along the way if needed, I can work on helping Meghan build her bridge.

I figure once I have it together enough that I can catch her if she falls… she’s free to establish her own pace, and find her own way.

We will forever do outreach work. We will forever share our story. We will forever create fund-raising opportunities for research. That will be part of our lives. Cowden’s Syndrome will be part of our lives. But it will not BE our lives.

My daughter has seen more in 10 and a half years than most adults see in a life time. She has been medically poked, prodded, and cut. She has been in and out of hospitals. She has seen doctors hired and fired. She has been listened to and she has been ignored. She has had arteries ablated, and a body parts removed. She has vomited pure bile from a stomach torn apart from pain medicine. And she has pushed each day through that pain. She tries to be like the other fifth graders, but she struggles. She struggles to be understood and to fit in.

But, from my stones, my own developing identity, I can see her clearly. Perhaps more clearly than she sees herself some days.

I don’t profess to know all things. She’s a bright preteen. There are things I’ll never know, and that in and of itself is OK, and normal, and even healthy.

What I see when I look at Meghan is not Cowden’s Syndrome.

I see a beautiful smile. I see a kind heart. I see compassion. I see love. I see competitiveness. I see a swimmer. I see a singer. I see a reader. I see someone who loves to play hard, and relax just as hard. I see raw determination. I see high standards. I see someone, a young woman who makes me proud to be her mom.

This summer we are going to work on building. I want to be able to provide her stepping-stones. And then I want to help her build her bridge, with a healthy mix of guidance and independence.

I want her to see she has Cowden’s Syndrome, but it does not have her. It is an inconvenient part of our lives – but not our entire lives.

We are going to make memories. We are going to create situations that have nothing to do with doctors or hospitals. We are going to laugh and play. We are going to continue to “Live Deliberately.”

And we are going to write it down. It sounds so silly to think that we have to write down having time for fun, but we do – for now. Maybe one day it will become so automatic that life’s adventures will become common, and our medical world will fit in the empty spaces.

It’s not going to happen all at once. There will be days we have to remind each other. But, we will get there.

And along the way we will slowly build the team of medical professionals who look at us as people, and keep our best interests at the forefront of their practice.

Because as we become empowered, we will be rid of the others. Positive influences only. We deserve that.

She made swim practice tonight. No small feat.

The pain – evident, but managed.

Endocrinology consult Thursday.

Hopeful.

A balanced thyroid certainly would help a few (dozen) things…

The Spoon Theory

Published on May 17, 2014 by beatingcowdensLeave a comment

While we were in the hospital last week, a good friend, who is chronically ill herself, sent Meghan a very interesting article.

It was about “The Spoon Theory,” and explained chronic illness from the perspective of one who lives it every day.

Meghan being incredibly literate, and a master at figurative language, picked up the analogies quite quickly, and while the author wrote about lupus, a disorder Meghan does NOT have, she found the text and related analogies very meaningful.

Our dialogue this week has already begun to include questions about how many “spoons” she has today. As someone who lives with my own share of issues, but none as severe as my daughter, this has opened up communication in a fantastic way.

The author has copyrighted the story, so I have permission only to link you to it, but I encourage you to give it a read.

http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

And thank you my dear friend for sharing. Thank you.

Worn

Published on September 1, 2013September 1, 2013 by beatingcowdens3 Comments

“Worn”

I’m tired

I’m worn
My heart is heavy
From the work it takes
To keep on breathing
I’ve made mistakes
I’ve let my hope fail
My soul feels crushed
By the weight of this world

And I know that You can give me rest
So I cry out with all that I have left

Let me see redemption win
Let me know the struggle ends
That You can mend a heart
That’s frail and torn
I wanna know a song can rise
From the ashes of a broken life
And all that’s dead inside can be reborn
Cause I’m wornI know I need to lift my eyes up
But I’m too weak
Life just won’t let up
And I know that You can give me rest
So I cry out with all that I have leftLet me see redemption win
Let me know the struggle ends
That You can mend a heart
That’s frail and torn
I wanna know a song can rise
From the ashes of a broken life
And all that’s dead inside can be reborn
Cause I’m worn….

http://www.youtube.com/watch?v=zulKcYItKIA

This has been the summer that… well…

It has definitely been a few extra stressful weeks, and not at all the relaxation we had so desperately hoped for and needed in June.

But, like it or not time marches on, and here we are in the middle of Labor Day weekend.

When we started the summer my daughter had 2 basic requests.

1. Go to the beach.

2. Go to Philadelphia.

Not so hard right?

And then we looked at the calendar about to change to September and realized between appointments, procedures, tests and surgery – we never got either one done.

Stress is very individual in how it affects each of us. We all have stress. We all deal with it differently. But I think that the reality that stress can, and does manifest in real physical illness is often lost on us. Especially lost is the harsh reality that stress can make our CHILDREN sick – until it smacks you in the face.

It became clear this week that the stress is weighing heavily on Meghan. She is one tough chick, but there is only so much the mind and body of a really cute, smart, well behaved 10-year-old should have to endure. It is now the top priority of her father and I to actively work on lowering her stress level.

We started today.

Months ago we purchased tickets to see the Contemporary Christian band, “Tenth Avenue North” in concert in Ocean Grove New Jersey on August 31st. We decided to make a day out of it – or a half day at least!

We let Meghan sleep as late as her body needed. (Falling asleep has become terribly hard again.) Then she got to watch some TV. I ran a few errands, and around 3 with a cooler full of cold cuts for “dinner” we set out to surprise her with a trip to the beach.

We never told Meghan our plan, although it was obvious she was secretly hoping for the beach. We just know too many factors can get in the way on a moment’s notice. So, it wasn’t until we were looking for parking that we even told her.

By then it was 4:15. The perfect time to take a kid who is not really sure she likes the beach, to the beach.

Crowds were waning, and as we set up our blanket she had some time to adjust to the seagulls, and the sand between her toes.

Forever my texture phobic kid, truth be told the sand in the toes was the reason I stopped really bringing her to the beach years ago. But today there was a mission to put her toes in the water and collect shells with Mom and Dad.

She walked with Mom. Then she walked with Dad. And for a few glorious minutes I laid my head on the towel and remembered my childhood days in Ocean City,NJ. I listened to the waves, felt the sand between my toes, and felt such PEACE!

Don't hate my polka dots - my husband did them for me! :-) — Don’t hate my polka dots – my husband did them for me! 🙂

We have a small bag with some beautiful shells.

We even played some with her Nerf frisbee. There was laughing, and smiling, and a good deal of stating and restating that the sand on her toes does NOT feel nice.

With some gentle prodding she came around, but was perfectly happy with 2 cool hours on the beach. So glad I didn’t get a full day plan in place!

What we did NOT do was have a picnic lunch on the beach as planned. Instead, we ate in the car. Sea gulls, being nothing more than glorified pigeons would have undoubtedly created significant reflux for my girl. So, we had Board Head chicken breast in the car, with potato chips, and had a great conversation – minus the sea gulls.

We walked the streets of Ocean Grove for a bit, and I saw the sign:

And somehow I knew we had done things right – today.

We headed over to the Great Auditorium for the concert. We happily bought our girl her first concert T-shirt, and her “Tenth Avenue North” Bracelet. In-scripted inside the bracelet are words from the cover song off their newest CD, “The Struggle.” It reads, “We are free to struggle, but we’re not struggling to be free.” She is sleeping with it on right now.

The show was amazing. Meghan was enthralled. They are quite the performers.

Meghan and I often sing along to their songs on the radio. Our favorites are “Worn,” and “Healing Begins”

“Healing Begins”

So you thought you had to keep this up
All the work that you do
So we think that you’re good
And you can’t believe it’s not enough
All the walls you built up
Are just glass on the outside

So let ’em fall down
There’s freedom waiting in the sound
When you let your walls fall to the ground
We’re here now

This is where the healing begins, oh
This is where the healing starts
When you come to where you’re broken within
The light meets the dark
The light meets the dark…

http://www.youtube.com/watch?v=Qe1yKciSlT4

The lead singer also spent some time talking to the audience about God’s plans. He told the story of a car accident his Senior year of High School where everyone thought he would die, and no one thought he would recover fully.

That 32-year-old man with a wife and 2 daughters spoke definitively tonight about believing God will use the adversity to grow greater things. He told us he touched a guitar for the first time at 18 while he was waiting to heal from his accident. Clearly, God had a plan.

I was touched by the story, but more moved by Meghan’s reaction. She HUNG on his every word. She was thinking – deeply.

Then she asked if I had any of the “Cowden’s cards.” And, God bless this girl she walked right up to the stage and handed them to one of the back up band members… alone.

“I just thought they should have them Mom, in case they want to read…”

This card was created out of her need to "teach" others about Cowden's Syndrome. — This card was created out of her need to “teach” others about Cowden’s Syndrome.

You know the irony with this darned Cowden’s syndrome is that what you NEED is to be away from doctors, because they cause STRESS which prompts other conditions that cause you to NEED doctors.

So, a few days after the hand became free, we are on the hunt for the solution to more developing problems.

Stress. We do what we can to deal.

We use music. We enjoy time together.

We try harder to get it right. We hug each other. We hold each other.

I still haven’t given up on a road trip to Philly. (If only I can get my navigation system to work…)

GOOD people bring out the GOOD in other people

Published on April 20, 2013 by beatingcowdens1 Comment

Being a Mom is challenging, but rewarding.

Working full-time is necessary, and carries some definite benefits, but huge time demands.

Being the Mom, and managing the bills, the groceries, and the lions share of the housework (and I have a helpful husband! :-)) is well, some days like standing at the bottom of a really tall mountain…

Having a chronically ill child is trying on the nerves. Worry and doctors appointments compete against waiting and absorb the bulk of any free minute.

Having a chronic illness, a rare genetic disorder like Cowden’s Syndrome yourself – well, it creates some challenges. And that is putting it nicely.

But, to combine all of the above… well I can tell you I wouldn’t trade any of them – but I am exhausted.

I spoke this week with a friend from work. Her son is chronically ill, but was suffering an acute episode one afternoon. This week Meghan felt fine. So, I had the opportunity to spend a short amount of time empathizing. While I was unhappy that he child was ill, I was in awe of her poise as she anxiously awaited news of her son’s condition in NJ. I think my heart was in my throat – yet my admiration for her composure under pressure could not be stated.

I am sure I am not the only one exhausted. I know I am not the only one contending with these issues. And, even if they were different – dare I say I almost felt normal – listening to others for a change?

My perspective is usually pretty good. I work hard to put myself in other people’s shoes. I talk a LOT with Meghan, about various social situations, and try to help her see that her point of view is never the only one. We have most of our best conversations in the car.

Tonight as we headed home from my in-laws I could no longer escape the conversation about the horrors of the Boston Marathon. I had shielded her for a few days because I truly just couldn’t gather my words.

So, tonight as I explained what the bad people had done, and I answered her questions, she was, as the rest of the nation was, absolutely appalled. And I spared her MOST of the details.

She wanted to know why people have to suffer. And she wasn’t talking about herself. She was talking about these victims, as well as other people – children and adults, with cancer, or other major struggles.

There was no right answer. So I gave her the best one I could. We have things in our lives to deal with – all of us. I don’t believe God picks us out to suffer. There is evil in this world. But I do believe, that we are given the strength to handle our struggles if only we ask. And, we are given the tools to use our struggles to make a difference in the world.

So she asked why people do evil things. Again – no right answer. So, I gave it my best. I explained that there are evil, awful people in this world, and she will encounter them at certain points in her life. But the beauty of it is, that for every evil person, there are probably hundreds, or thousands of good people. Those are the people we seek out in our lives. Those are the people we center our worlds around.

People are not inherently bad. Most people are downright good. And I reminded her of the stories I have told of the heroes of 9/11. And then I told her about he heroes in Boston.

I told her of the resolve of the police and all emergency personnel that REFUSED to give up until their people were safe. I explained how they put their lives on the line every time they rang a bell or even took a few steps. Yet, they would NOT stop. They shut down a city and they made it happen. They worked together, and they arrested their suspect. These are the good people.

And then there were the ones, who helped the injured at the marathon. Civilians and emergency workers alike. They ran in to give a hand because people were in need.

There are some rotten things in this world. There are diseases and illnesses and suffering. There are awful, evil people too. But we, we will live our lives focusing on the good guys. The ordinary folks that “wear the capes.”

This world is not full of evil people. It is full of good people who so often stand together intolerant of evil and focused on human decency.

God Bless the Boston PD, and all the emergency workers, and all the brave citizens.