swimming – Page 5 – beatingcowdens

Reality – tough to swallow

Published on January 8, 2014 by beatingcowdens5 Comments

I am a huge fan of online shopping, and normally I anticipate my orders my counting the days till their arrival.

Except this one – not so much.

It was a purchase made out of necessity, not desire. It sat in my online shopping cart for 2 months before I hit send last night. It will arrive some day next week. It leaves me with mixed emotions.

Gratitude, that it is not a full time arrangement.

Anger that it has to be part of our lives at all.

Frustration for my energetic girl who would rather run, than walk. And would love to do both without pain and bone-crushing fatigue.

Anxiety, about all the ignorant folks who will pass judgment that I hope she doesn’t hear.

Guilt, that my child can walk and so many others can not.

My beautiful girl, as you know by now, has suffered with health issues her whole life. They have ranged in severity, but they have been consistently problematic. The diagnosis of Cowden’s Syndrome in the fall of 2011 answered some of the questions, but by no means all of them.

Research is scarce. The cancer risks associated with our PTEN mutation are real, and documented. But, the rest of the symptoms are shared though anecdotal conversation in small internet groups, worlds apart.

I can not know if, or to what extent, Cowden’s Syndrome explains the other maladies that have plagued her virtually since birth.

There are food sensitivities, on the narrowest list we have ever had she is gluten, dairy, soy, dye, and preservative free.

There was the gall bladder removal at age 3.5, and the pancreatic insufficiency that requires digestive enzymes with every food.

And, despite the most serious precautions, as well as daily probiotics and nutritional supplements, there are still daily stomach aches.

There is the AVM in the knee – the one that needed 4 procedures to finally cut off the abnormal blood flow – for now.

There was the vascular malformation in her hand that the kind surgeon was able to correct last summer – after MUCH angst.

The lipoma on her back was almost certainly Cowden’s related.

And the biopsies. The three thyroid biopsies – the most recent of which still wreaks havoc on my nerves- those are Cowden’s too.

But the chronic pain? The joint issues that make 200 mg of celebrex a necessity – not a luxury…. who knows?

And the physical therapy that is a necessary part of her existence – just to function.

What about the migraines – now well controlled, but not gone?

And I sometimes wonder why she is a bit absent minded? Shame on me. It’s undoubtedly necessary for her to survive. Imagine if she thought of all that every day, and all her daily activities? She would lose that magical smile. And I don’t want that.

The frustration is as palpable as the largest nodule in her neck. She WANTS to do EVERYTHING the other kids can do. She wants to run, and play, and participate with them. She is TIRED of being different. She is TIRED.

Swimming is a good idea, but it takes so much out of her. Last night’s practice got in the way of tonight’s. School was tough. Clammy, hot flashes, uncomfortable. Maybe she’s coming down with something, but more than likely she’s just wiped out.

Three practices a week was the plan. Two became the goal. This week it was one. But somehow its worth it, for her to be able to say she is on a team. To be able to say she swims competitively. To feel somewhat “normal.”

When she was younger I could hide things from her. Now she’s just too smart.

When she was younger I could convince her all the kids get tired. I could deflect her attempts to play too hard.

When she was younger she might not have noticed that an hour in the snow on Friday knocked her out for the weekend.

When she was younger…

But she’s older now. Wise beyond her years. And I have been where she is, and I hated it. She has it worse, and I know she hates it too.

She can swim – pretty fast. Just not too often.

She can run- a few laps back and forth in the gym – as long as she has her Celebrex and PT.

She can play outside for a bit – but not too long.

She can walk too. Until the pain in her legs, or her hip, or her knee wipes her out. Or until she has to surrender to fatigue that will keep her in bed for 13 or 14 hours.

I am grateful. You bet. And sad too. And I think it’s OK to be both.

She spent a few years in a MacLaren push chair when the walking was extra long. Now SHE is extra long – adult sized at 10. Time for adult sized reality.

SO if you happen to run into us when she needs that wheelchair, just smile and say hello.

We will remember to be grateful we don’t need the wheelchair full-time.

When you are tempted to pass judgement on my healthy looking daughter – be grateful you don’t need it at all.

Rare. Invisible. Real.

Published on August 5, 2013 by beatingcowdens4 Comments

Those are the words that come to mind every time someone asks me to describe Cowden’s Syndrome.

Most people, even most doctors, understandably, have never heard of it before.

With an occurrence of 1 in 200,000 that is not a surprise.

There is always hope... — There is always hope…

What is a surprise is on days like today, where the sun shines a bit brighter. The traffic is a little lighter. Daddy is home on vacation. And, we met a doctor who had heard of Cowden’s, understands it, and is compassionate, likable, and easy to talk to. Yep, imagine that? A POSITIVE experience!! 🙂

We saw an NYU affiliated hand surgeon today. I am sure God heard the chorus of prayers storming Heaven for an answer for this kid, and today He delivered.

We were early for our appointment and waited in an uncrowded waiting room, while a pleasant receptionist organized the paperwork.

We were taken promptly at our scheduled time. We met with a friendly, competent PA. She had the hands Xrayed. The doctor was in the room 10 minutes later and immediately had Meghan on his side when he started to talk about two of her favorite things – Disney and swimming.

He examined her hand. He easily recognized the soft tissue tumor that is typical in Cowden’s Syndrome. He told her stories of another young boy he treats with a rare disease who grows bone instead of tissue. He validated her. He was confident. He drew a picture, and explained why that tumor was causing pain.

With every word he spoke her smile grew. The hope went back into her eyes. She waited anxiously for him to tell her he was going to take it out.

She almost leaped up and cheered.

August 20th in the early morning hours. my then 10 year old will prepare for her 10th surgery.

That’s how you know a kid is at her wits end. When surgery is an exciting option.

He told her it wasn’t going to be better right away. He asked if the PT from the letter we showed him (you know – the PT who had it right ALL ALONG! 🙂 could rehab her hand. I told him I was quite sure she could, but I would ask. (Actually – I have no DOUBT she can do anything. Dr. Jill NEVER gives up on Meghan!)

He said the pain may be worse for a bit after he “messes around” in there, but that gradually she will feel the pain lift and the range of motion return. I wanted to hug him.

All it takes is someone who “Gets it.”

We all want to be validated. As adults we often struggle to have our concerns made valid by those we love. When you have a rare disease, where the symptoms are often invisible, you struggle to be taken seriously. People are quick to pass judgement.

She looks fine, why can’t she walk? She must be lazy.

She is complaining again? Attention seeking,

So when you are just trying to have your voice heard, at the same time that you are trying to find your voice -life can feel extra challenging.

Cowden’s Syndrome is a struggle. We are buoyed by the fact that we have each other. I have Meghan as my inspiration, and she has me as her advocate.

I will NEVER give up. She will continue to get the care she needs. She will continue to see doctors who validate her. She will continue to inform an under informed public with her “cards.”

She is my heart and soul, my sunshine. She deserves nothing less.

We can’t change the “Rare.” The “Invisible” or the “Real.” But we can open the eyes and hearts and minds of more and more people every day. Ours is one of so many other Rare Diseases. We are grateful. We are blessed. Even through our pain we have gratitude for our blessings. And we will move forward with our mission of awareness.

A “Guest Blogger” for our 200th Post!

Published on July 11, 2013 by beatingcowdens21 Comments

I wanted to make the 200th post of “BEATINGCOWDENS” extra special, so I asked my (almost) ten year old daughter Meghan to be the Guest Blogger!

1. How has Cowden’s Syndrome changed you?

Cowden’s Syndrome hasn’t changed me. It has always been a part of me. Knowing I have Cowden’s Syndrome has only made me more aware and more prone to understanding my body.

2. What are some things you want people to know about being a kid with Cowden’s Syndrome (PTEN Mutation)?

It’s hard not to be like other kids, but I am really glad all of the problems are found earlier than later.

3. What makes you glad you were diagnosed?

My diagnosis forced me to look at what was good for me and what wasn’t. I had to give up soccer and dance, but I LOVE swimming, and I feel like I am getting better at it every day. I am always trying to improve physically because I need to stay strong. I am glad I found a way to compete with other kids, and not always be last. I am also building swimming friendships.

4. What makes you sad/scared/ or worried you were diagnosed?

I feel more vulnerable, and sometimes a bit weaker because I can’t do everything the other kids can do. I can’t run and play outside like them. My weak immune system causes me to get more viruses, and I worry about thyroid cancer too. I try to find the positive in every negative and I don’t let worry get the best of me.

5. What is the most frustrating part of Cowden’s Syndrome?

I go to so many more appointments than any of my friends, and lots of times we have to wait forever. I keep busy at my appointments with my books, my iPad, and my Rainbow Loom. It is taking up the first few weeks of my summer vacation, and I would rather be home and bored than running back and forth to Manhattan every day!

6. Do you have any kids that you can talk to about your diagnosis?

I feel like I have three kids I can really talk to that understand. My friend Conner is in Colorado. He also has Cowden’s. He is about my age and really funny. Also, I can talk to my friend Georgia in Australia. She is also about my age, and even though we are really far away from each other, she is a very nice girl. I am glad I know her. I have been able to FACE TIME with these far away friends. Sometimes the time difference gets tricky, especially to Australia. The first time I saw Georgia it was 10PM here! We talked for over an hour!

I also have a friend on Staten Island, who I feel like I can talk to. Even though its only been a short time, I hope our friendship continues to grow.

7. What do you hope to do when you grow up?

When I grow up I want to be a genetecist.

I feel like I will know a lot about it. I also want to do agility training for dogs. Right now I have two dogs that I love very much, Allie, and Lucky. I always want to have dogs.

8. How do you plan on using your diagnosis to make a difference in the world?

I plan on making all rare diseases more well known. I want to do a movie night at my school and raise money to donate to The Global Genes Project – they help all rare diseases.

I want more people to understand rare diseases, and do more research so there can be a cure.

But, all that starts with awareness. Last year I asked my parents for something to wear, a symbol (like a pink ribbon) that would represent me, and my struggle with Cowden’s Syndrome. The Global Genes Project uses a denim ribbon and the saying “Hope It’s in Our Genes.” I really like that symbol so Mom’s friend made it into a necklace for me. It is hand engraved, and says “First of its kind.” It is really special.

A denim cause ribbon, crafted after the Global Genes Project's slogan, "Hope it's in our Genes!" — A denim cause ribbon, crafted after the Global Genes Project’s slogan, “Hope it’s in our Genes!”

Mom and Dad have one now too. One day I hope to look across the room and see someone else wearing one. I want the denim ribbon to be as popular as the “pink ribbon”

********************************************************************************************************

Hi. I’m Meghan.

I am really excited to be Guest Blogger. Life with Cowden’s is hard. I try to focus on all I can do, and like to do – especially swimming and reading. I’m an (almost) 10 year old. I wanted a normal life, but really when I think about it my life is the only one I know. Even with its cons I’m happy with it. Cowden’s Syndrome is a real pain,but its brought out the best in me. People need to be aware of these diseases. It feels great when someone understands you a tries to lend a hand.

Thanks For Reading!

Love,

Meghan

Invisible Illness

Published on July 7, 2013July 8, 2013 by beatingcowdens6 Comments

For the last 6 nights my soon to be 10 year- old has slept in between her father and I.

Now I will pause to give you time to gasp, as wave your fingers at me.

I will give you time to self-righteously proclaim that you “know better” than to put your child in your bed, because once you start “that habit” you will never be able to break it.

Go ahead. Tell me its my own fault that I don’t sleep as comfortably as I could with my 5 foot tall 85 pound child bouncing between clinging to my husband and I.

Tell me I should just send her back to her own bed.

And then – when you are done. Come over. Please. I will even make you some coffee – but you will have to settle for fake milk. No need to keep any in a house where a child has a dairy allergy.

When you come over you can watch her for a few minutes. I will let you watch as she winces in pain, and cries out as she bounces around. And that, that is after she actually gets to sleep.

See before she gets to sleep, there is pain. Always some pain. Always. But some nights, or weeks like this one, it is worse than normal.

There are nights, and plenty of them that she sleeps in her own bed. Right through until as late as we will let her. Those are the nights the pain is at its best.

Then there are the nights she needs one of us to rub her in her bed. A knee, a calf, and ankle, an elbow, a shoulder, a wrist, or even a head is keeping her up. Sure, you could say she is exaggerating. Maybe she is acting like any kid who doesn’t want to go to sleep. But Meghan is above many things, a really rotten liar. So, when she hurts – she lets us know. And when she doesn’t it never comes up – end of story.

The worst nights are the ones like this week. The ones where she can’t even get herself comfortable in her own bed. These are the nights she cries not only for the pain, but also for the raw fatigue that keeps her awake when she would rather sleep.

This week there has been pain. Pain in the legs as she adjusts to swim practice, or plays with a friend or two at a play date. There has been pain in the wrist, the pesky wrist injured now since early June. The one that has to have a problem – we just don’t know what it is – yet. The wrist in line for an MRI/MRA has a pulse to it that is reminiscent of the AVM in her knee. But we are trying not to jump the gun.

If you ever do stop by my house in the middle of the night, to see why none of us have any semblance of a normal sleeping pattern, maybe you can bring a warm compress, or strong hands, and help as we massage cramping, painful body parts.

No one knows the Meghan of 2 AM.

Everyone sees the bright smiley face.

Everyone sees the interpersonal child who talks with everyone – who makes them laugh.

Everyone sees the reader, the friend, the kid who likes quiet, and order, and rules, and helping people in need.

The Meghan of 2, or 3 AM disappears with the morning light. She washes her face, brushes her teeth, and puts on the best smile she can to prepare to face the world.

This is the story of life with chronic, invisible illness.

No one knows about the growths on her thyroid, or the insufferable hot flashes she has.

No one knows about the effort it takes her to walk up the stairs, or to sit and play with friends.

No one knows she is slated for 2 more MRIs, a pituitary function test and a pelvic sonogram – and that’s just the next 2 weeks.

No one knows because she doesn’t “look sick.”

And she wouldn’t have it any other way.

She wears her denim ribbon necklace, the one crafted after the Global Genes Project logo – every single day. And she dreams of the day she will look across a room at another little girl wearing one too.

The denim ribbon is the symbol for rare and genetic disorders, and since identifying her own need to have a “symbol” to wear, like my pink ribbon, she saw to it that one was created to be worn around her neck. She chose to have it modeled off the Global Genes Project- an organization that spoke to her heart soon after our Cowden’s Syndrome diagnosis.

We wear them now, my husband, and Meghan, and I – united in our battle. And we hope that one day there will be more.

Next month we will travel to Disney World, as we have for the last 6 years. While we are there Meghan will use a wheelchair.

Recently, when the controversy hit about the misuse of Guest Assistance Passes at Disney, I was sick to my stomach.

You see I have a child with a virtually invisible disability. She can walk, by the grace of God. She can swim. She can function throughout a day – often with insufferable pain at night.

But what she can not do is walk for long distances. Ever. Regardless of the footwear – no matter how hard we try to prepare. She just can’t.

We took her out of soccer because of the impact. We took her out of dance for the same reason. Now she swims, and even with that sometimes the muscle pain is difficult to bear.

So it is especially tricky for us at a park that necessitates walking and standing. Sometimes she can stretch her legs. Usually she can cover about a half mile on foot. Then she needs to rest. If she pushes too hard on day 1, by day 4 we might as well be back home.

She spent her birthday one year in tears, pleading with me – in the middle of EPCOT that she would go home “RIGHT NOW IF YOU COULD MAKE THE PAIN STOP.” That was the day after we let her walk 50% of the day before.

She hates being confined. She would rather walk. She looks like she should be walking. But she can’t be. Bottom line.

So as I said earlier, those of you who want to judge me for rubbing my child’s sore and aching body so she can rest – feel free. As long as we breathe she will be able to seek comfort in the arms of her mother and father.

And when you see me pushing her around Walt Disney World, I know there are the lowlives out there who abuse the policy, but before you assume that my “normal looking” child is one of them, ask yourself if you have ever met anyone with an invisible illness.

Ask yourself how many children, when given the opportunity, would rather navigate the happiest place on earth from the confines of a chair. Sure we all need a rest some time. But she’d rather have it on a bench. And while we are at it – she would rather be having an ice cream cone like the other kids too.

Just because I teach my child to go through life with her head held high. Just because I teach her to push through pain. Just because I teach her to smile at adversity and to be kind to judgmental strangers- that doesn’t mean she doesn’t hurt. None of that invalidates the 4 surgeries for the AVM in her knee, the thyroid biopsies, the constant scans, the issues yet to be uncovered.

My child knows patience. She knows how to wait. And she does it all year at countless doctors, and invasive lab tests, with grace, and poise and dignity.

So, before you forget what invisible illness looks like- look here. We are too busy BEATING COWDEN’S to acknowledge the judgmental. We teach our daughter to love and forgive. She has too much stress in her life to harbor any anger. We learn our best qualities from her.

JUNE!

Published on June 10, 2013June 10, 2013 by beatingcowdensLeave a comment

It’s June. It doesn’t feel like it. At least the weather doesn’t. It’s cool and rainy. I guess that’s OK for now – while we are still wrapping up school.

It has been a long week.

I don’t usually leave my blog unattended for so long. I am behind at writing. I am behind even further at my reading. It seems the days just blend together lately.

It is June, and when you are a school teacher, this is a month of eager anticipation, and volumes of paperwork to be settled. There are boxes to back and things to carefully put away in preparation for the fall. There isn’t much time to be still.

Well – in another 2 weeks it is!

It’s June, and when you are an advocate – you do take a few minutes to celebrate the victory that put speed bumps on the street where you had the accident that damaged your back forever and ever. You are grateful for the citizens, and politicians alike that fought relentlessly. You are thrilled by speed bumps, but you still want that stop sign. You celebrate with a glass of wine – or two.

It’s June though, which means that damaged back has to ache longer in between trips to the chiropractor, and the PT you promised yourself seems like it may never happen. You are the mother. You will get by.

It’s June and when you are a Mom of a kid with Cowden’s Syndrome you spend 2 or three afternoons a week at physical therapy to make her chronic pain bearable. Not totally sure the pain is related to the Cowden’s, but sure it’s related to SOMETHING, you scoff at the denial for school based PT and wonder what they would say if one of them could spend a morning in your house watching your 9 year old walk like she’s 90. You balance those PT appointments with swimming lessons, all in preparation for the team she will join. The team she is desperate to swim on successfully, and God willing – pain free.

It’s June, so you balance the breakthrough of the virus on that adorable immune compromised 9 year old’s face with increased doses of the antiviral medicine and extra trips to the pediatrician. It’s June so when it’s not pouring – you make sure she has a hat to keep the sun off her face. And when you look at the dose of antiviral medicine you start to feel a bit guilty, nervous maybe, about her liver – and all the prescription medicine. So, you take a chance and toss the Celebrex to the side. Hoping maybe, just maybe she can get by without it.

It’s June and its raining. You feel a little guilty about “forgetting” to tell her you stopped the Celebrex, but each day you hear the complaint of another joint, another ache, another pain. Ten days later you abandon your hopes of relieving the stress on that young liver, and you relent. Too many Tylenol – not cutting it. Celebrex it is.

The war rages – all the months. The battles are won and lost on a regular basis – but the war looms large. I don my armor – a large binder of medical facts, bloodwork, and reports. I gather my inner strength.

It’s June. Summer vacation is coming, but there will be no camp in our house. It doesn’t fit in with the schedule.

Every six months. Every doctor. Forever. Mine, and hers. Different doctors. Different times. Different facilities.

I am getting better at the scheduling. I have learned to bunch them together. So, we go in February and again in July.

For Meghan it’s the thyroid first. That foreboding nemesis. Ultrasound, appointment… and we will see what comes next. Then its the AVM follow up, and the genetecist. That’s just the last week in June.

Mom has an MRI to schedule to look at that spleen, some more surgical follow ups…

There will be 15 appointments before the 2nd week in July. That’s if every one goes well.

This is how it has to be. We have to work, she has school. We can’t have the appointments all throughout the year, so we must endure them all at once.

It’s June. I am already tired. Wrapping up one full time job to focus on another. I feel my anxiety rising.

Getting all my rest. Gathering my inner strength. Armed and ready. Kicking Cowden’s to the curb…

We can… WE WILL!

Thinking outside the box

Published on March 22, 2013 by beatingcowdens4 Comments

And so began the week that was.

A “simple” annual review – not so much. But that’s OK. Mamma Bear remained calm. I am most strategic that way.

I am however exhausted, and facing another battle.

It was a bit of a struggle to keep the chin up this week, as I often felt like her:

But, I didn’t act like her. Not even once. (Well once I cried – but I got yanked past it.) And that’s about all of that story I can share here, for now.

But these last few ~~weeks~~ months, have left me with a lot of questions.

See, there is this constant battle to do what is right, or what I perceive to be right, as I advocate for Meghan, and for my family. But inevitably, because I am so introspective – I am left with a ton of questions at every fork in the road.

Last week when we took her to 4 doctors and an ER about her shoulder, I ended up being told I went to the wrong ER – that we didn’t belong there. But it is a cancer center, she is already a thyroid patient there, and my child grows things. While we are blessed that none have been cancer yet – I am not of the “wait and see mentality.” But, still I paused and wondered if I had done something wrong.

In the end, the rheumatologist gave her a muscle relaxant. We began rehabilitative PT and I am seeing progress. The shoulder and neck remain wickedly sensitive – but she has back almost full range of motion.

Still we watch the lump behind her shoulder blade, in hopes it continues to decrease in size and doesn’t turn out to be the “soft tissue tumor” we were advised to look out for.

Really – no one has even a bit of a clue. And it is often just downright exhausting.

Physical Therapy this week was refreshing. At least I deal with professionals who have made themselves aware of Meghan’s needs and focus with a goal of eliminating, or severely managing, her pain. Thank God we found them.

Because of them, Meghan will swim in her meet tomorrow. No freestyle – it hurts the neck. But that was OK with her.

Backstroke seems by far to be her favorite. I love watching her swim. She seems so at peace.

It gives me a time to break from all the questions. The wondering. The worry.

It is easy to doubt yourself sometimes when so many things are changing at once. Whether you are precipitating the change, or reacting to it out of necessity, when there is so much at once I think it is normal to wonder.

We are not super difficult to get along with. Yet we go through doctors like a toddler goes through shoes. We have very few close friends – confidants to be trusted. Those who will be honest and open minded. We spend a lot of time alone. We get along really well – thank goodness.

I think what we look for is doctors, friends, associates, people who can practice:

I just wish there were more. No one really fits in a box. And that’s not just us, and our “rare disease.” Everyone is unique, and special. Everyone needs to be looked at with a fresh pair of eyes. Everyone needs to be viewed through the perspective of the other person. Only when we start to look at things through someone else’s point of view do we solve anything.

It is the outside the box thinkers that solve IEP problems, medical problems, friendship concerns, desires to make the world better…

Daring to think outside the box is risky. It is hard. It is necessary.

Especially in this season of “test prep” where I have seen this scenario one too many times…

Mine, yours, all of them – they are individuals. They have specific needs. We should never be discouraged when advocating for them and their needs.

In many cases – we are their only voice. We MUST think outside the box for them.

“I’ll get you my pretty…”

Published on March 12, 2013 by beatingcowdens12 Comments

It is late, but I need to decompress. my apologies to those of you I meant to reach out to personally.

Really – the last few days again have been a whirlwind.

The Wizard of Oz seems the appropriate metaphor – so bear with me.

Some time last week Meghan began complaining of shoulder pain. Left shoulder – mildly irritated. So, we gave some tylenol and kept on moving. But come Sunday afternoon it seemed to take a marked turn for the worse. And that is where the story began.

She was struggling to move it at all, and the pain face was coming. You know – the face that tries to be brave but is so strained it just ends up looking exhausted? That one.

We got her to bed Sunday night but started to wonder if she would make school the next day. We waited until she was sound asleep and began poking at the shoulder. Sounds mean I know, but we figured if we got a pain reaction out of a dead sleep… and we did.

So I began to Email her awesome PT who did her best to help guide me and keep me calm. She also got me a 1:15 appointment for Monday.

I emailed my boss that I would be out and I let her sleep in Monday. Then she woke up. I guess that’s where it started to get trickier.

Well, maybe not quite that tricky yet – but close. The pain was intense. We decided to try the Urgi Care to see if she needed an Xray. We waited and were seen by a perplexed doctor who decided against the Xray and suggested we see the pediatrician. Great plan. He was on my list but I was hoping to get a jump start since his hours didn’t start till 2.

In the mean time, we went to see the PT. Have I mentioned Jill and Lauren at Leaps and Bounds PT are the absolute BEST? We saw Lauren who calmly assessed Meghan through careful range of motion activities. It was clear she was in great pain. Lauren told me she was worried about the muscles – clearly strained, and the potential that there might be a slight injury to the rotator cuff.

At this point I swear I heard the sound of Cowden’s Syndrome, like the Wicked Witch, cackling in the background, “I’ll get you my pretty…!”

My heart sank. The shoveling hadn’t helped I am sure. But the swimming. That had to be the real culprit. I felt like I had been punched in the stomach, or perhaps that someone had dropped a house on me.

It had taken years to find a sport that she enjoyed. One that she was ENCOURAGED to do. The pride and excitement on her face – amazing. And now the threat that maybe it caused this injury. My thoughts flooded with wonderings about the future.

At 2:30 we headed to the pediatrician. He evaluated her but wanted an orthopedist. We tried three. None took my insurance. Finally they found one local that takes my insurance who would see her Weds. (tomorrow) at 4:40 – but don’t worry because they are triple booked and we should plan on waiting 3 hours.

Um… no.

So as I stood at the window of the pediatrician’s office I asked him to order the MRI that seemed inevitable. He reluctantly did. Then I asked him what to do for her for pain. He called us back in and looked at her again.

He said what I already knew. He said, ” No one around here has a clue about Cowden’s Syndrome, and they don’t want to touch her.” Take her off Staten Island. Go up to Memorial Sloan Kettering where they first diagnosed her AVM. Go to the ER up there. We have no way of knowing if the knot behind her shoulder is a muscle or a soft tissue tumor. (Thank you Cowden’s)

“I’ll get you my pretty…” There goes the cackle again. And a firm reminder to Cowden’s that it WILL not get us

This was at about 5. So, we had a quick bite to eat and headed up to 68th and York. They were perplexed by our arrival, but they handled it fine. They got an Xray, and made Meghan comfortable with heat packs and pain medicine. The Xray wasn’t read because there was no radiologist on, so we were discharged hours later with the pain pills, and orders to see an orthopedist – the one who diagnosed the AVM, and to call our endocrinologist for the Xray results in the AM since he is the one we see at Sloan.

At this point Felix had joined us and we were all a bit punchy. Meghan was stiff and in pain. I was over thinking and exhausted… together we made quite a sight.

We arrived home after 11 and I headed down the street to the 24 hour pharmacy for her pain medicine. Except – they didn’t have it. And they offered me no suggestion as to where to get it. So, at 11:20 – armed with my smart phone, and facebook, I relied on the guidance of a few night owls to get me to a pharmacy. Medicine retrieved, heating blanket purchased, and Twix consumed – I headed home some time close to 1AM.

Felix was staying home Tuesday. It was Parent Teacher Conferences for me. So my head touched down on the pillow some time around 1:20 AM.

Too tired to even think, I could still hear the cackling of the witch – reminding me so much of Cowden’s Syndrome… threatening… “I’ll get you….”

I headed out to work by 7:30.

I called for the Xray results and got a reprimand by our doctor at Sloan that was appropriate for a child. He was annoyed that I had even brought her to the ER last night. I told THAT doctor to take it up with my pediatrician. I really despise arrogance.

In contact with Felix and Meghan we got an appointment for the orthopedist, on the 21st of MARCH!

Since that wasn’t going to work a long term plan, a call to the rheumatologist led to an appointment at 2:30 PM today.

Basically she feels the lump is a muscle and not a tumor…. (So take that bucket of ice water witch!)

She gave Meghan an order to rest for a week. Better than a season! She also gave a script for PT and a muscle relaxant for a week. We will reevaluate then…

In the mean time, she is asleep. Resting with a heating pad. School tomorrow will be tough, but she will make it.

I got through hours of conferences and stayed alert and awake!

I will find the number and call the coach about swimming.

We will not give up. But apparently she needs PT AND swimming, not PT OR swimming. We have time. Not a worry. We will fit that right in.

You know what, it has been a wild two days. But it could have been a whole lot worse.

Everything with Cowden’s seems to have a sense of urgency. There is always the “what if…” Her joints are hypermobile because of the Cowden’s. She injures easily. But all that means is we have to teach her to get in control of her body. So the PT is a have to. That’s ok. Could be worse. Least we love our PTs.

AND… it will be PT AND Swimming. My girl loves to swim. And she’s not half bad.

A few readjustments. A few more bumps in the road. A few more skipped meals, and some more gray hair. But it will be OK again.

Cowden’s Syndrome gives us obstacles. We work around them, through them – whatever is appropriate. As long as we don’t stop.

And well – if anyone says we can’t… we just melt them. It’s much quieter now.

Hopefully tomorrow runs smoothly.

But for tonight…

Life Lesson – Character

Published on March 9, 2013 by beatingcowdens2 Comments

Maybe the hardest part about being a kid with Cowden’s Syndrome, is trying to be a kid.

I wouldn’t know. My diagnosis came way after I was a “kid,” although I might say that it was never easy fitting in being the kid who was always at the doctor or in surgery – for something.

Meghan has kids who like her, but precious few that she calls friends. The girls she is close to are lovely through and through. I find them similar to Meghan in developmental exposure to the real world. They still know how to play dolls and be kids.

This week the swim meet was against the team of one of those friends. This is a young lady who has been to my home, and Meghan to hers. She chose to write a book about friendship and dedicate it to Meghan. They took countless swim classes together. So, the fact that they would be competing, in some of the same events today, caused anxiety for Meghan.

She worried about losing – and about winning. She wasn’t sure how to digest either one.

After the race where she took second and her friend took third, her dear sweet friend, half Meghan’s size, stayed behind to try to help Meghan out of the pool. I wanted to hug her for being so graceful and such a lady. That little girl, whom I always respected, gained my admiration forever right at that moment. It spoke volumes of her character.

So as we replayed the meet in the car on the way home, Meghan was pleased to have placed well. It was only her second competitive meet ever, and she was enjoying the feeling of competition. We didn’t dwell on it, and after a shower we were off to buy some shoes for Easter, and a sweater too.

Imagine then my surprise when I overheard her on the phone with another classmate bragging about her win over her dear friend.

When the conversation ended we spoke and there were tears. She was just so proud to finally be successful, she forgot herself. Now she was just beside herself. She was worried her friend would find out she had bragged, and was terrified at losing her friend over nonsense.

So, she did the bravest thing I could have imagined. She called her friend, and confessed. Knowing she might never get caught, she could not live with the fact that she had been disrespectful to someone she held so dear. So, in between sobs she told her friend the whole story. And she apologized.

I am sure she won’t do this again any time soon. She was devastated.

And her dear friend – I expected nothing less – greeted her with a pure and forgiving heart. Turns out she herself had once bragged, apologized, and been forgiven.