Soft Lock Downs and other things that shouldn’t be…

Published on September 20, 2014September 20, 2014 by beatingcowdens2 Comments

I spent the weekend with my college roommate. She was the one I lived with the longest. She was the one who introduced herself to me the first day. She held me 2 months later as I was wracked in sobs at the loss of my cousin Meghan on my 18th birthday. She learned how to drive in my Toyota. We had fun, shared friends, and life, and got to know each other in deep ways saved for long term friends – or ones you’ve lived with. We gathered enough good dirt on each other to be sure we’d be friends forever.

The last time I saw her was in December. She and her husband showed up at the wake for my Dad.

The time before that was when I made it out to the wake for her Mom.

Somehow we find each other…

And this weekend we hugged first on Friday, in that room in New Jersey, miles away from each of our homes. We cried, and hugged and pulled it together. As the scene was replaying itself again. But this time it was far worse.

College Graduation - 1995 — College Graduation – 1995

It’s not right that we don’t see each other. And it’s no one’s “fault.” And I have a few dear friends I am in the same situation with – whose kids I’d barely recognize if it weren’t for Facebook and Instagram.

We stood together for a while, just the two of us. Interrupted only by people trickling by. We spoke about his fight. His strength. His battle. I told her how much I respected all he did to fight. I told her I was so privileged to have shared a few email exchanges after he took to this blog.

But, from where we stood, in the out of the way corner that defined her comfort zone, we might have even forgotten why we were there.

Although the reality became apparent through the greetings, and the hugs, and the “I’m so sorry…” sincerely sent in her direction, over and over.

Her little brother had died. Her “little” brother was little in age, not in height or spirit. He had a presence about him 20 years ago when I greeted him in our dorm room. When he spent time with us. His charm, and sincerity, and personality resonated even then.

Her “little” brother was 36. Diagnosed with stage 4 pancreatic cancer months ago, he fought with every fiber of his soul, through every treatment and surgery presented. He fought for his family, for his wife of 10 years, and for his two handsome young sons. He fought out of zest and a love of life. He fought for his siblings and his Dad.

I remember when she and I spoke this summer. I remember the conversation because she asked me a question I didn’t want to answer, but one I had needed to ask myself months earlier. She asked how long it had been for my Dad, from the time he was diagnosed until the end. And as I choked over 10 weeks, I instinctively tried to fill that statement with stupid things… “he’s young, there are things he can do…” But, she had heard a number. Just as I had when I had asked the question months earlier.

And I kept an eye on the calendar as I checked in on my friend. And every day I thought of her. I prayed often for her brother, and the family.

Sunday came the text that he wouldn’t make the week.

Tuesday came the one that said he was no longer suffering.

Friday rolled into today, and we sat. Side by side in a standing room only funeral parlor. We hung onto each other’s hands and friends and family alike shared stories, and memories of a guy who seemed to have been larger than life. And my favorite story of the day came when they said he went back to college after he had his boys. And he got his Master’s Degree too. Not for financial gain, but because, “How can I hold my boys to a higher standard than I hold myself to?” Class. His spirit filled the room. There was an abundance of support, and love.

And then we were at this backyard party at her brother’s house. And to the naked eye it could have seemed like any end of summer gathering. But it wasn’t. People were eating, and sharing stories, and passing time together. And two handsome blond boys ran about with their friends.

And then there will be tomorrow. And this young woman, now a widow, will need to press on for her boys. And those boys will slowly come to the realization that Daddy is never coming home. And his sisters to the reality that he won’t be at the next gathering, and his Dad to the realization that his son and his wife have now gone on before him – leaving him with lots to take care of.

36 years old. Father of 2. Dead from Pancreatic Cancer. Illogical. Incomprehensible. Insidious, painful, horror show of a disease. It just doesn’t make sense.

At all.

And there have been so many things that don’t make sense. Ever. They pale in comparison to the horror of a son and a brother, and a father dying out of order, yet still they are the things that keep me wondering about all things.

I think it was Wednesday at work.

I had a first grade class. And the loudspeaker went something like this, “This is a soft lock down drill. Please take all proper steps.”

And just like that 28 first grade students instinctively went to the back corner of my room. The stayed low and quiet as I shut the lights and the smart board and locked the door. They got themselves out of sight of the glass window on my door. And they sat. Silently. And I was stunned. I think it was the 10th day of school. They range from 5 to 6 years in age. And they never moved. They looked to me for a reassuring face. I faked it.

Truth is as necessary as I know they are – I HATE those things. And in this post 9/11 world, littered with countless nonsensical school shootings, and deaths, I get it. And I take it seriously. And the reality that one day we COULD be a target of chaos doesn’t escape me. But that doesn’t mean I have to LIKE it. I don’t like that we need to scare the crap out of these little ones just in case. They are growing up in a wild world.

So wild that when Meghan’s Social Studies homework became to be aware of the news every day, (something we actively have tried to hide her from because there is just enough CRAP in her life) one of the first stories to come across was terror threats in Times Square. She gets things very quickly. And she is stellar at context clues. Dad’s in Times Square every day.

These kids are growing up in a tough world. Grown up worries. Grown up realities. Young minds. It’s so hard to make any sense of it at all.

And so when the ones who are supposed to help -just don’t, well that seems to make things worse.

In the middle of the renovations that swallowed the end of August, Meghan broke her foot. A stress fracture to one of the superficial top bones. I am absolutely not getting “Mother of the Year”” for this, because I was in full on “suck it up we have things to do” mode for the first 36 hours after she banged the foot hard into a misplaced shelf in the basement. That was a Thursday night. And by Saturday of Labor Day weekend, we found ourselves in Urgent Care with a “suspicion of fracture.” Of course being a holiday that simply meant ice, rest and elevate till Tuesday when we could get to the podiatrist.

And we brought the X-ray, and the report. And everyone was very pleasant and we were told that the X-ray abnormality didn’t exactly line up with the point of severe pain. So, clinically it was appropriate to diagnose a stress fracture, put her in a boot, and have her repeat the X-ray in 2 weeks.

So she began middle school days after getting her braces off, with this giant black boot on her leg. And she plugged along for two weeks, and we got the X-ray repeated as we were told to. So, when we returned to the office for the recheck we gave them the disk and the report.

There was some grumbling about the radiology place we went to writing the “worst” reports (but no one told us where to go,) and some discussion in the other room about things on the film that were “probably nothing.” (Doctors should learn some moms have rabbit ears.)

So he came into the room after having had Meghan take off the boot. There was a surgical resident in tow.

“How does the foot feel?”

Meghan, “Much better.”

“Great, there’s no evidence of fracture on the x-ray. You must have healed. Let’s transition you off the boot.”

Please know during this whole exchange he NEVER EXAMINED HER FOOT!

Me, having already read the X-ray report, ” What about the report talking about “bony bridging and bordering sclerosis.?” Does that mean anything?”

“Well, it’s not causing her pain is it?”

Me,”Well she doesn’t have foot pain, per se, but, there is chronic joint/muscle/bone pain that we work on. Could things being out of order in the foot trigger some of this?”

Me,”I guess really what I’m asking is, is anything on that X-Ray consistent with Cowden’s Syndrome?”

“Well does Cowden’s Syndrome cause bony overgrowth?”

Me, “You’re the doctor, I am asking you.”

“But you are far more familiar with the syndrome than I am.”

Me, in my own brain, Thanks to Google University, and then out loud, “Are you seeing this? (pointing to the extra bone that juts out of her left (and right) feet) on the X-ray?”

http://www.orpha.net/consor/cgi-bin/OC_Exp.php?Lng=GB&Expert=201 ( You may have to cut and paste the link)

(THAT IS A PAGE FROM A WEBSITE, reviewed by a doctor at the cutting edge of PTEN research. It took me less than 10 seconds to find. It verifies bone cysts connected to Cowden’s Syndrome, and had anyone asked I would have been able to tell them about the “non-ossifying fibroma” in the left femur that scared the crap out of us when she was 2.)

“I don’t think so, but you should probably have a specialist look at that. I don’t need to see her again.”

GOOOOOOOOOOD THIIIIING!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

And I turn to see the tiniest tear in the corner of Meghan’s eye…. “Mom, he never even touched my foot. He has no idea what the problem really is. What’s the point of wearing the boot? I have to trust my own body cause they don’t know anything. I think its healed and the boot is hurting my knee.”

Fair enough.

She’s the closest I have to a doctor, and the thing that has made the most sense all week.

When you have a diagnosis that leaves you prepped for cancers of all types at all ages and in all places, there are things that rock you to your core.

Sometimes living with PTEN Hamartoma Tumor Syndrome is like living under the constant threat of a terrorist attack. But the terrorist is cancer.

You get to live in fear, or live your life.

You get to try and make sense of things, or run with them anyway.

With the motivation of those – not connected to us by Cowden’s, but connected to us by life – who have fought the good fight, I try to stay focused. To live life instead of hiding in a corner, or some days under the bed with the lights off…

So many things, so many tragedies will never make sense.

But it’s less about making sense, and more about being sensible. It’s about instinct. And love, and compassion. And cures. I am a big fan of cures.

Tonight, wherever you are in your life. Whatever is rattling your world, I ask you to stop for a minute.

Say a prayer for those two little boys who will begin to know that Daddy is never coming home.

Say a prayer for a family who lost a 36 year old high quality man too soon.

And please. In this world that makes no sense. Do something logical. And kind. For someone. Cause we ALL need it.

“A tranquil mind is not a little gift…”

Published on August 22, 2014 by beatingcowdens1 Comment

Growing up I didn’t spend a lot of time with my father. Despite some really fun day trips, I didn’t really know him well at all.

My Mom married an incredible guy when I was in high school, and there was this love and support that was there every day. We got to know each other quickly and well.

And that’s my tale of two fathers.

Ken has been a constant in my life since I was 15. He loves me like his own, and has treated my as such, without fail, and in all things. I adore him.

Dad struggled after Vietnam, after horrors that I can only imagine. He struggled to find his way, and to find the balance. He married twice, and had three kids, then he spent 10+ years in a long relationship. He lived all over. He worked to add his charm and personality to nightclubs all over NY. He knew how to live on top of the world, and at its bottom.

Several years ago life brought him back local, and for the first time that I could remember, he wasn’t working nights. We spent more time together. He came to dance recitals and swim meets for Meghan. He came to my house for gatherings, and just to be with us. We liked having him around. All of us. Even the dogs.

I got to have two “Dads.” While one is called Ken and one was called Dad, the terms are synonymous. Two very different people. Very lucky girl.

And I used this time to catch up with Dad. We would talk on the phone a lot, about anything. Sometimes he would talk. And when he did, I listened. When he really talked about old stories I sometimes even took notes. Because I didn’t want to forget anything. I don’t think he would have loved that idea. I suspect he would have thought it wasn’t worth my time. But, it was.

Lots of times I would talk. He was a really good listener. He knew when to interject and when to stay quiet. He knew when I needed to hear advice, and when I just needed a sympathetic ear. Sometimes I get overwhelmed. And I just need to offload, without judgment or solution. I called every Friday that I grocery shopped. Sometimes we talked for hours.

And the years saw a transformation as he was being treated finally for the PTSD that had tormented his every move since the war. He didn’t talk much about it, but every once in a while… it was my turn to listen carefully. And I did. Gratefully.

Then the conversations started to include talk of him being tired. Looking for energy. Millions of excuses listed, tried, tossed. Then there was the jaundice. And the blockage. And the pancreatic cancer. And within about 10 weeks my sister and brother and I said goodbye to our Marine. “The few, the proud…” to the very end.

Dad was a philosopher. Sometimes I was right with him. Other times we didn’t quite agree. But, it never mattered.

And in the weeks before his death I became his healthcare proxy – because I do healthcare all the time. And I got his medical records,and put them in a binder, and Dad laughed because he somehow knew I would – and so did my brother and sister, and my siblings and I took him to the fancier hospital. And we asked some questions. And we talked a lot. But, it was done. In the end it was just time for it to be the end.

But I was not, and am not ready to let go. Maybe that’s unhealthy. Or maybe that’s keeping the memory alive. Whatever.

It took weeks to clean out his small apartment. I touched every paper. I read, and sorted, and filed. I made more binders, and file folders. I shredded only with great care at my own dining room table. And as I sorted I found little scraps of paper. Little random thoughts. Notes. Scribbles of Dad’s. So I gathered them all together and I taped them onto large sheets and I saved them as a PDF for my brother and sister. And I laminated the originals for me. And sometimes on quiet nights, when my mind is busy and I can’t sleep, I peek through those notes. Almost like a chat with Dad.

Tonight I flipped open to the words, “A tranquil mind is not a little gift.”

And I paused. And I smiled. Dad’s mind was not always tranquil. But in the end it was even through physical torment. He had lived enough emotional torment to know “A tranquil mind is not a little gift.”

I am a worrier. Not a shock to those who know me even a little. But, also not unfair, all things considered.

This was a light week here for doctors. Only 2 appointments and one argument with a disrespectful office manager that led to a formal complaint. Oh, and one random really large pathology bill that was clearly not done right. The appointments were fine. One was annoying in the leaving at 7 for an 8:30 to be taken at 10:40 to get home around 2, but all things considered it was smooth. The other was with the gastro doctor who wants another visit to the ENT to peek down at the esophagus. (If only I could get a scheduler to do these things…) And the fight of course was with my doctor. The office staff of a vascular surgeon for a procedure I definitely need soon. I’m in the market for a new vascular surgeon.

But since we had some time, and we were looking for some light entertainment, we replaced the bay window in the front of the house.

So after a slightly tumultuous, but altogether fun trip to Disney, we returned very late Tuesday, slept most of Wednesday. Did lots of laundry, sent my husband to help out at my sister’s on Thursday, and Friday got ready for the new window.

Not that we WANTED a new window. We just bought the other one 14 years ago when we moved into the house. But about 2 years ago there was this little black spot that kept growing. And we called the company to look at it, but it turned out there was a class action lawsuit we had to participate in and I filled out miles of paper and it took almost a year to get someone to the house. By the time they came the little black spot was large and clearly water related. So the nice man took pictures and the conversation was about replacing the center of the window. Until they called the next day and said the black spot was in the wrong places, and the window would have to be replaced. But since the window was over 10 years old we’d get a percentage off the cost for the window and installation. Um, well that price was so wild we bought the window ourselves. And Ken and Felix and his friend John got it to our house, and finally Saturday all the planets aligned to put it in.

It was supposed to be a half day job. It was supposed to fit right in. And Felix, and Ken, and John, and Bobby, and Brendan worked their bottoms off. But, there was some cutting of walls, and by the time it was all back together on the outside it was well past 11 pm. That wasn’t the inside.

I like the house neat. Actually I need the house neat. And you can tell me whatever you want about how it doesn’t always happen like that, or I have to give it up. But I can’t and I won’t. Because it’s a control thing. I know it. I’ll own it. I can not control Cowden’s Syndrome, or any aspect of why Meghan feels cruddy so much of the time. I can not control random illnesses or natural disasters, or unscheduled hospitalizations and surgeries, or any other obstacle that is going to come into my way. But, through much experience I have found it markedly easier to handle every single crisis with a clean house. Something about having order in the home, gives me some sense of peace when the waters are very rocky.

So, at 11 on Saturday night I looked around and began to freak a bit. That’s when we decided to paint. It was time anyway, and the house was on its ear so to speak. So I prepped the room and there was paint. And the living room and dining room are back together, but the hall needs a coat too… and you get the idea.

Not to mention that a few weeks ago Meghan began the move from her room on our floor to the upstairs of our cape. There are two rooms with that peaked roof and lots of floor space. (There have to be some perks to being an only!) She has a bedroom, and a room with a desk, and all the things she loves. It has taken 4 weeks to clean out and move her, but we finished today. And as I sat in her room I cried a little. I remember distinctly being 9 months pregnant and crying in that room (see a pattern?) I was so scared. I was right to be scared. Some scary things have happened in the last 11 years. This time I know the move upstairs will be far less painful than the one she’s sure to make just a few short summers from now.

It was a good time to move. Junior High starts in just a few days really. A whole new school. A new chapter. Turning point. And as she decided what to keep, toss, and donate, her personality began to shine through. With just a few pictures left to hang, she has created an atmosphere that is representative of her. Now to keep it clean and clutter free… 🙂

But nothing is without event, and there is no time when I am fully at rest, as I frantically tossed my flip-flops off when I heard her cry out,” I NEED YOU!” I arrived at the top of the stairs to find her crouched over grabbing a leg that has been giving her trouble for days. One too many trips up the stairs, or on the floor sorting things? Who knows. Just like the headache that’s been around one day too many. Sinuses, allergies? God, I hope so.

At some point I’ll have to go to sleep tonight. And tomorrow will be for more appointment making, and dealing with random bills. The side of the house is littered with trash. There are 10 bags being donated Saturday morning. The clutter and dirt are disappearing simultaneously – with LOTS and LOTS and LOTS and LOTS of work. But my sanity is being restored.

And while this is far from how I would have chosen to spend this week – so close to the end of summer, Meghan got some time in with some friends so it was in fact a success.

So much flux. Moving Dads things in earlier in the year jostled the basement. Moving Meghan upstairs caused some purging. And slowly everything is coming together as it always seems to.

I think of how many times I would have called my Dad this week. The number is too high to count. I miss him every day.

He told me once to keep writing, to just keep letting it all out no matter what I thought of it. So I do. And I think about how he would have respected my need for order, while encouraging me not to sweat the small stuff.

Tonight I think calls for a glass of wine, and some reflection. Gratitude for an almost “normal” week with largely “normal” problems. Feeling grateful that my mind, while always a flutter, is somewhat tranquil, and…

“A tranquil mind is not a little gift…”

Thanks for the chat Dad. I miss you. A whole lot.

Life begins… at the edge of your comfort zone…

Published on August 15, 2014August 15, 2014 by beatingcowdens5 Comments

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.

“It is only with the heart that one can see rightly…”

Published on August 13, 2014 by beatingcowdens4 Comments

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!

First Pitch!

Published on July 31, 2014 by beatingcowdens3 Comments

We don’t watch many sports in my house.

Meghan’s sport of choice is swimming.

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

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

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

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

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

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

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

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

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

PRESS THE ARROW…

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

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

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

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

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

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

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

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

A perfect ending to a perfect night.

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

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

BEATING COWDENS together.

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

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

MUCH LOVE TO ALL!!!

Scars…

Published on July 19, 2014July 19, 2014 by beatingcowdens3 Comments

There are days I forget.

I forget that it’s not just Meghan, but also me with this rare disease.

As a matter of fact, it’s actually uncommon for me to remember.

Maybe it’s survival. Maybe it’s maternal instinct. Maybe it’s denial. Maybe it’s some combination.

But then there are days that it smacks me right across the face. And it ~~stings,~~ no, actually it’s more like a scalding burn.

I post mostly about Meghan. She’s my hero. She’s my inspiration. She motivates me to be a better person, every day. But, if I really want this blog to be transparent, and I really want the truth about our experience living with and beating Cowden’s Syndrome to be out there, sometimes I have to allow my own inner self to be exposed.

I feel good. I really do. Aside from a little lag from my thyroid, I am feeling better and stronger than I have in years.

But there are the scars. They hide behind my clothes like a little secret. Cause people forget. And that’s what I want, because most of the time I forget too.

But then I look in the mirror, and I see the scars across the implants replacing the diseased breasts removed in the nick of time. And my shirt doesn’t sit quite right. And it’s probably my own fault, as I refused the tissue expanders necessary for a proper reconstruction. I didn’t have the time, or the energy, or the desire, or the stamina to put myself through the frequent fills, the repeated pain, and the additional surgery necessary for the sizes to be equal. It just wasn’t worth it to disrupt our lives longer.

I saw the plastic surgeon last week. My two-year follow-up. Hard to imagine. She gently reminded me again that she could even things out whenever I was ready. No cost thanks to the positive pathology for breast cancer, and the genetic mutation. No monetary cost. I’m not ready. Yet.

I saw the breast surgeon last week too. I see her every 6 months, so she can make sure nothing sinister is growing behind those implants. The reality and the reminder that as fortunate as I was – I still had breast cancer. And once you know for sure that those malignant cells had life in your body, you never look at things quite the same. “No lumps or bumps,” she happily reported. “See you in 6 months.”

I can’t wait.

And there are the lymph nodes in my neck. They were checked last week too. Sonogram. As long as they stay stable, we can leave them alone. “But, if they grow…” she reminds me every time. Six months for her too.

And my legs. Fitting into the smallest size they have ever in my life the veins are protruding again. The PTEN diagnosis, known for enhancing vascular issues, perhaps the explanation for the vascular problems that have caused 2 operating room visits and 5 in office procedures since I was 23. But, it doesn’t really matter I guess. The legs start with a familiar heaviness. Then there is the throbbing. The last thing I feel before bed, and the first thing I feel after the alarm gets shut down. And the pulsing – like I can feel the blood moving the wrong way through the broken veins. And the giant bulging, from groin to ankle, that makes it a little less fun to buy the shorts in a size 2. I switch to “Bermuda” length and some sundresses. I wait for the word that GHI has approved another vascular procedure.

Not to mention I saw the GYN Oncologist too. Everything ramped up a notch with the “Cowden’s Syndrome” label. There are no “regular” visits anymore. Even with that benign pathology, it’s a forever commitment to the “Clinical Cancer Center” of the hospital. Two years since the hysterectomy too. Time marches on. You can barely see the scars from the laproscopy. But I know they are there too. A few inches under the implant scars. Reminders of the year that changed my life. Our lives.

The week finished with genetics. Our geneticist – found by an incidental internet search at the recommendation of our physical therapist, is a gem of a man. He greeted me with a hug and a smile, and exclaimed that I looked better than I did at my diagnosis. Then he drew my blood. More genetic testing. This time not because of the Cowden’s Syndrome. This time, it is to fulfill the wishes of my father. Wrapping up a genetic counseling visit I completed in April, and after consent was received from GHI, the vial of blood was drawn to test for the markers for pancreatic cancer, the killer of my father, and paternal grandfather, as well as about 15 other markers I probably don’t want to know about. We both said a silent prayer that the test yielded a whole lot of nothing. We hugged again. It’ll be about 6 weeks.

So this morning my shirt didn’t fit quite right. The indentation on the right side was causing the shirt to fit lopsided. And the vein bulging out of my right leg, especially just above the knee was a little too much for me to take. I struggled with my tears, trying desperately to hide them from my extraordinarily observant soon- to- be -11 year-old.

This is the reality she knows we share. Yet, I want so badly to help her maintain some of her youth. Worry free innocence taken with the words, “You have a mutation on the PTEN gene…” and years of her own surgeries have stripped her of some of the privileges given only to the young. There is something about 11 surgeries with no real end in sight, that can leave you a bit anxious.

It only took a minute. Although it seemed longer. A hug from my husband. My ever patient, loving soul mate, who makes me feel beautiful just by the smile in his eyes when we kiss. And it was time to shake it off.

But not without first acknowledging that maybe that was quite a few appointments for a week’s time..

When we got in the car to head to the doctor, the Christian station was playing one of my favorite songs, “Fix My Eyes,” by For King & Country.

There are no coincidences.

And as we sang along, I looked in the rear-view mirror.

“Fix My Eyes”

“Hit rewind
Click delete
Stand face to face with the younger me
All of the mistakes
All of the heartbreak
Here’s what I’d do differently

I’d love like I’m not scared
Give when it’s not fair
Live life for another
Take time for a brother
Fight for the weak ones
Speak out for freedom
Find faith in the battle
Stand tall but above it all
Fix my eyes on youI learned the lines and talked the talk (everybody knows that, everybody knows that)
But the road less traveled is hard to walk (everybody knows that, everybody knows)
It takes a soldier
Who knows his orders
To walk the walk I’m supposed to walkAnd love like I’m not scared
Give when it’s not fair
Live life for another
Take time for a brother
Fight for the weak ones
Speak out for freedom
Find faith in the battle
Stand tall but above it all
Fix my eyes on you….”

Click the image to hear the song…

We spent Friday looking for sites for a fund-raiser for “Rare Disease Day 2015.” We met a lovely woman who was surprised we weren’t raising money for us specifically. We explained that we were grateful. I feel well enough to work. We have good medical coverage. There are so many not as fortunate.

When it gets to be too much, I know to fix my eyes on things far beyond the mirror. I have a greater purpose right in my own house. And WE have a greater purpose.

We are BEATINGCOWDENS… together!

Coaches Change Lives

Published on July 13, 2014July 14, 2014 by beatingcowdensLeave a comment

I know that teachers have the power to change lives, but as my girl gets to the middle school years, I am really starting to think the power is with the coaches.

I have always wanted my daughter to be an athlete, and truth be told, THAT didn’t take much convincing. She is a natural competitor. She loves the thrill of racing. competing, and performing. She has done some time in soccer, with some fantastic coaches, who worked to nurture her. She loved her time dancing. But, her body, much to her chagrin, was not made for pounding. The knees, and hips, and major joints couldn’t handle the impact.

So we headed to the pool. Her first experience with any competitive swimming came at the age of 9, on a CYO team we were connected to through a friend. Soon after that season she tried out, and was accepted to join a 12 month team. She began with them in July of 2013. And, while the desire to compete was always strong in her, it seemed there was constantly something standing in her way.

We started the year with the goal of making 2-3 practices a week. But, in the fall things took some wild turns, and there were migraines, and neurologist visits, viruses, and fatigue, and strep, and one obstacle after another. There were weeks one practice seemed like a feat. Meghan had a hard time finding her place, because she wasn’t there much. And the cycle continued. During the fall my father became ill and passed away quite suddenly in December. That set her into a bit of a tailspin. Then in the end of December a routine thyroid appointment told us there was much to be concerned about, and that she’d need her thyroid removed.

Ironically this is about the time she started to enjoy going to practice. The coaches were intelligent, and compassionate. The kids were all finding their way.

Meghan responded so well to the two young women who coached her most often. They understood her medical trials, but treated her no differently. They pushed her just enough, but never too hard. They listened when things hurt, and gave her ways to work through it.

She mustered the courage, and stayed healthy enough to make it to her first big meet in January. She was awed by the whole experience, and truth be told, I don’t even remember what she swam. Like so many firsts, it was about getting it done.

Thyroid surgery in February sidelined her for a few weeks. And, long after her body had healed physically, her thyroid hormone levels never seemed to take to the synthetic replacements. An emergency room trip in February – 10 days post op, led to an overnight stay and the elimination of the synthetic calcium from her diet completely.

But, by the beginning of March she headed back to practice. Her coaches welcomed her, encouraged her, and built her up. She started making regular practices, and swimming CYO at the same time.

Then, in May her body quit again. Severe gastritis landed her in the local hospital for 6 days. She missed her last CYO meet. She underwent extensive testing, and the blame for the erosions in the esophagus, and the inflamed, bleeding ulcerations in her stomach lay with the Celebrex – the very medication that was allowing her to function through the chronic pain that plagues her.

Crossroads.

The elimination of Celebrex, and the discoveries of the damage it had caused in her GI tract, led to changes. Her already Gluten, Dairy, Soy free diet, became also free of beef, spices, chocolate, and the other tastes that had carried her through. Then there was the pain. The constant awareness of pain in all her major joints was playing mind games with her. The pain – very real – could be fed nothing to control it. Oral pain meds were, and still are off limits.

Weak from her stay in the hospital, it took another week home before she could even consider a return to practice. And when she did, she was angry. She was angry at her body for the pain, and angry that she couldn’t keep her old pace. She was just angry.

But the coaches, they were supportive. They let her take the lead. They let her take her time. She rested when she needed to. She left early when she had to. And finally, just about 3 weeks ago she started making full practices again.

The pain is a daily battle. One she is fighting with mental power to overcome, and the best nutrition we can offer to her.

Last week she made 4 days of swim camp with the varsity swimming head coach at the local college. 6 hours a day. She slept well. She was sore. But she was determined.

So, when we set off for the meet upstate yesterday, my expectations were low. I was hoping she would finish without disqualifying. 100m of butterfly is not for the faint of heart, especially in a 50 meter pool. But she did it. And closed in with a time .67 seconds away from qualifying her for Junior Olympics. Junior Olympics, the best of the best swimmers in her age group. An honor just to make it in the door.

We went back today to give it one more try, but it wasn’t meant to be. This year.

Close doesn’t cut it. This I know. Except when you consider that she got THIS close, despite all odds, it’s something to consider. Meghan’s synthetic thyroid replacement is not working. It’s just not. At our last appointment we found out her TSH level – the Thyroid Stimulating hormone has increased by over 300% in 6 weeks. Post operatively it remained about a 10, it took a brief dip to 6, and then over a 6 week span increased to 20.5. ABNORMALLY HIGH is what it says on the lab report. That, combined with her low levels of T4 means that the work of the thyroid, that can not be done by the gland that was removed, is not being done by the medication, which has just short of doubled since February. The endocrinologist is baffled. I’m concerned, but not shocked. He agreed to research alternative medication, but he has, “never had to prescribe one before.” For those of you not thyroid patients, you are considered hypothyroid, once the TSH goes above 5. Most people feel human between 1 and 3. I function best when mine is .5. At 20.5 you would likely not find me out of my bed. You would certainly not find me at swim practice.

“Mind over matter,” we say.

“Everyone has something,” we say.

“Show the world you are better than Cowden’s Syndrome,” we say.

And she does. All the time.

On the way home we talked a lot. We talked about obstacles, and overcoming. She started to set goals.

And then, there was this text from her coaches.

“”Hi Mrs. Ortega. (We) just wanted to send you guys a text and let you know how proud we are of Meghan. She is such a pleasure to coach and is always looking for ways to improve and be her best. Swimming isn’t only about the times, it’s about the people and having the opportunity to create and share memories, good and bad. Meghan has so much drive, and goes through more than we can even imagine. She is truly amazing to go through everything she does and still push her body in the water. Today was just the first time. We know there will be plenty more opportunities for her to make cut times, and we know she will. She has limitless potential and we want her to know that. She is truly an amazing person, and we are lucky to be able to coach her.”

And in that moment, everything was OK. Coaches have this incredible power. They can motivate and heal and push in the same breath. They are gifted with selflessness like no other. My heart is grateful for these women who will continue to shape my daughter’s future. May they always know the impact they are having on a life full of bumps, twists, and turns.

Champions of HOPE

Published on July 8, 2014July 8, 2014 by beatingcowdensLeave a comment

It’s no secret that we have been followers of “The Global Genes Project” since our diagnosis in 2011. Meghan fell in love immediately with the denim ribbon, and their slogan, “HOPE it’s in our Genes!” That play on words stuck with her, and the ribbon gave her a good deal of connection at a time when we weren’t sure if we’d ever connect with another soul with “Cowden’s Syndrome.” The connection with the RARE Community at large carried us through those earliest days.

The end of 2011 and well, 2012, and… well, you get the idea… held some tumultuous times for our family.

Adjusting to the diagnosis was not easy. Finding balance within the labels, and the risks, and the screenings, and the surgeries, and the appointments was (and sometimes still is) a struggle. In the months when the diagnosis was at its newest, Meghan’s thyroid was called into question several times. We discovered nodules we never knew were there and learned the early risks of thyroid cancer were real, and ever-present.

She soon underwent the most horrendous of what would be 4 thyroid biopsies over the next 2 years. Scarred physically and emotionally, we began to wonder about this beast we were up against.

In February of 2012 Meghan had her 4th knee surgery for an AVM (arteriovenous malformation) in her right knee. Now convinced it’s stubborness could be credited to Cowden’s Syndrome, the fight to control it’s growth took on a whole new meaning, and we were referred for consultation to Boston Children’s Hospital.

While we balanced the screenings for Meghan, I was sent to my own set of initial screenings. Being 38 and newly diagnosed, I was in the battle full on, and I had had no idea. All the imminent cancer risks associated with Cowden’s Syndrome – except for the thyroid which often comes earlier – seem to peak right around 40. No stranger to doctors, I was trying to figure out how the diagnosis helped explain the roadmap that was my own medical history.

In March of 2012, I underwent what was to be a “prophylactic bilateral mastectomy,” to battle the 85% breast cancer risk I had with the PTEN mutation that caused Cowden’s Syndrome, and my own medical history which had already seen 7 increasingly suspicious breast biopsies. Seven days later, while having my drains removed, my husband and daughter sat in the room as the doctor announce it was a “good thing we moved when we did.” My left breast, the one that had never seen a scalpel, had 1 centimeter of DCIS, close to the nipple and clear of the chest wall. I had breast cancer. They found it by accident. My aggressive, intelligent surgeon, who I met because of my diagnosis, and really BECAUSE of my daughter had saved my life. I needed no treatment.

I left the room that day holding the two people I love more than anything. Unaware of the plans clearly in place for us, I was so filled with gratitude, and so in awe of the reality that if I had never had Meghan, I would have likely never known. And the surgeon’s words, “If we had waited till July like you had wanted, you would have been in a fight for your life,” still ring in my ears. Sometimes you have to stop the “what ifs?” and just say “thank you.”

Ten weeks later I was back in the hospital for a complete hysterectomy. A suspicious uterine polyp, enlarged ovaries, and Cowden’s Syndrome combined again for too great of a risk, and the recommendation was for surgery and quickly.

The shock on my body, the trauma to my family at this point was intense.

I had begun to scour the internet looking for places to go. I found http://www.PTENworld.com and its dynamic young moderator, a Cowden’s patient for many years. I found Facebook, and a beautiful support network there. I found a yahoo group, and a mom there who has consistently gone above and beyond for me, simply out of goodness. Finally, there were real people I could talk to.

One day that Spring I received a Pandora necklace with a pink ribbons on it. After years of advocating for my mother, a bilateral breast cancer survivor, holding the pink ribbons that belonged to me felt strange. Yet, so did the new boobs, smaller, but perkier than the old ones, and all the clothes I was learning no longer would fit quite right. So, I took comfort in that necklace and I wore it a lot.

And one day my very obsevant girl, who was 8 at the time, a few months shy of 9, asked me “What stands for me? The gold ribbon is for childhood cancer, the pink ribbon is for breast cancer, the puzzle piece is for autism. What about me? What about people like me who are dealing with this (Rare disease) every day? I NEED something mom. Not to have a thing, but for my identity.”

Stunned, as usual. I realized I had begun to heal myself, to seek comfort for myself, but I was leaving her behind.

So I happened to be retelling the story at lunch. And my teacher friend, whose husband is a jeweler, and who has a son with autism, really “got it” on so many levels. She told me she’d talk to her husband and see what was around. So I gave her a denim ribbon sticker from the Global Genes Project, and they were on a hunt. Which turned up nothing. There seemed to be no piece of jewelry worldwide to symbolize those with Rare Genetic Disorders. And, with there being over 7,000 RARE dieseases, accounting for almost 10% of the population, to us this was silly.

So my friend’s husband offered to make one. For Meghan. Because if she wanted a piece for her “identity” she should have one. So he did. It took months. And it was perfect. Absolutely perfect. And he was so generous in the donation of his time, all to light up my girl’s world.

Typical Meghan, no less that 5 minutes after she put it on, she started with, “Wouldn’t it be great Mom, if these were available all over the world, and then we could see them when we went places, and we would know the people who have, or love people with RARE diseases?’ And the conversation continued to include asking me to reach out to The Global Genes Project to try and make it a reality.

Well two years have gone by. Felix and I each wear one too. Only 3 ever made. Until recently.

There have been lots of EMails exchanged. Lots of conversations. Lots of people. Ultimately they did decide to have the necklace made, and while the decision thrilled me, I would be lying if I said that I wasn’t disappointed that they couldn’t use our friend, the jeweler. But, business decisions are what they are, and this one was not in my control. And, despite that disappointment, Meghan’s dream, her vision, is becoming reality. We received 2 samples this week, and a “THANK YOU” from the team at Global Genes! The necklaces will be on sale through http://www.globalgenes.org in the fall!

Two years have gone by.

I have developed deeper, closer “long distance” relationships with some “kindred spirits” in the Cowden’s Community – globally!

My girl has some of her own friends with Cowden’s now, spread across the world. She will be 11 soon, and is quite the young lady. She understands life on levels deeper than she should. Most impressively she understands that despite our struggles, there are many in the world who struggle in heart, mind, body, and soul. She knows that “Everyone has SOMETHING!”

This past year she organized an assembly at our school. She worked with Student Council to arrange an evening fund raiser. She partnered with a friend in her own class who has a RARE Disease. We sold T-Shirts. We received intense support from faculty, and parents and students. Every child got a denim ribbon to wear for RARE Disease Day. We sent thousands of dollars to The Global Genes Project.

She has already begun to plan for next year, and wants a much bigger fund raiser. “At a place Mom.” We can really get the word out and raise money. For The Global Genes Project http://globalgenes.org/, and for the newly founded PTEN Hamartoma Tumor Syndrome Foundation http://www.ptenfoundation.org/, another organization close to our hearts.

She has a mind that never stops. She has the heart and voice of an advocate. And this year, she was nominated for the TEEN Advocacy Award at The Global Genes Project. (If you scroll down, the teens are close to the bottom.)

http://globalgenes.org/2014-rare-champions-of-hope-nominees/

Champions of HOPE indeed. So proud of her. So proud to see her name with all the others who have decided to “Do Something.”

“HOPE it’s in our Genes!”

We are BEATINGCOWDENS!

Finding my “Happy Thought”

Published on June 28, 2014October 23, 2019 by beatingcowdens1 Comment

It was a few months ago. I can’t quite recall the date. It wasn’t my finest hour. (or day, or days…)

I was grumpy. Worried. Angry about the struggles my girl was being forced to endure. Twisted about a future of doctors appointments and surgeries.

I had noticed she seemed extra down, and I took it as my cue to worry harder.

At some point, I broke down, expecting a clear answer to the question, “What’s wrong?” so I could continue the business of worrying some more, and searching for answers.

But the answer wasn’t even close to what I expected.

“Mom, you need to find a “Happy Thought” because you being like this all the time is really affecting me.”

Um, ouch. Wow. And she sure told me.

She wasn’t being disrespectful in the least. We have worked on honest speech and clear language, for survival – and to help us prep for the teen years. She was doing exactly what I asked of her. She was telling me what she was thinking. And she was right.

Years of parenting a chronically ill and allergic child have left me in a permanent hyper-vigilant state. The “other shoe” has been known to drop without warning, and there is a constant need to search, study, learn, and discover whatever I can about whatever is plaguing my girl. I am her advocate. I am her voice. We have between us undergone at least 17 surgeries in the last 11 years. That doesn’t include countless hospital stays, tests and procedures. There is always a pile to contend with, whether its bills to fight or file, prescriptions to order, reports to hunt down or appointments to make. Life is very busy.

There was a time I used to walk for fun. Hours on end with my music in my ears. I would walk for miles. I would walk everywhere. There was a time I would read for fun. Not medical books. Just leisurely reading. I used to watch “Law and Order.”

Now between working full-time, parenting full-time, chauffeuring to appointments, trying to make swim practice, keeping food in the house, keeping some semblance of order, including clean laundry, clean curtains, and clean cabinets – it was easy to get swallowed up by obligation and forget the joy in my life.

To be quite honest with you, there isn’t much I would change. Do I sometimes miss those long carefree walks? Definitely. But, would I for one second trade one bit of my beautiful, tenacious, funny, stubborn, intelligent little girl? Not a chance.

We watched “Hook” a few months back. It was a rare occasion when I sat to watch a movie. It is one of my favorites. And for those of you who might not be familiar, it’s a “Peter Pan” spin off where Peter ended up all grown up – a lawyer. He forgot his magical youth, and the story takes him back to Neverland to find it again.

I am sure this is where she got her admonition for me to find my “happy thought,” as Peter needed his to remember how to fly in order to beat Captain Hook.

I thought and I thought, long after she had said the words. I was tempted to compare myself to other adults, and justify my grumpiness. But I resisted the urge. These words weren’t spoken to another adult. They were spoken to me. And what a gift she had given me.

Transformations don’t happen over night, but I have forced myself to become aware of the things that give me pleasure.

I love to write. And so I have been trying to give more attention to my blog. Therapy on a keyboard.

I have taken my feet instead of the car wherever I can, and wherever time allows. I can’t walk for hours, but I can appreciate the short walks and relish them more.

I am realizing that a happy Mom is some of the best help I can give. I won’t know all the answers. I can only give her the same honesty I ask of her, and I can only do my best.

And while we focus on being positive, and its something I ask of her all the time – it’s not fair to ask it and not model it.

So we are all a work in progress.

And when I really soul search for what makes me happy, my pleasure really lies in seeing other people happy.

I am constantly telling Meghan that Cowden’s Syndrome does not define us. But, in fairness, actions speak louder than words.

It’s been months since I was told to find my “Happy Thought,” and I hope I never forget that day. While we still have our ups and downs it serves as a reminder for me that I am no good to those I love unless I find happiness myself.

Meghan and Felix – they will always be my happiest thoughts.

But I love my family, and God, and exercise, and nutrition, and cool breezes and music, and flying birds, and summer…

I strongly encourage you to find your “Happy Thought.” It’s tough to start looking when a 10-year-old calls you out.

Loving my heart - outside my body- my biggest happy thought. — Loving my heart – outside my body- my biggest happy thought.

Groundhog Day

Published on June 17, 2014June 17, 2014 by beatingcowdensLeave a comment

“Groundhog Day” – who doesn’t remember the movie? There have been plenty of days I have thought of it. I may need to watch it again soon.

Pediatric Endocrinology is a ridiculously small sub specialty.

There is this web of interconnections, and all sorts of people who have lost sight of the patient.

Ultimately I may need to head out-of-state to try to get a clean opinion. But, I have to take that and so many other things one step at a time.

But, after the travesty on Thursday, I was left with little choice but to keep me appointment with the surgeon at our current hospital.

You remember the surgeon?

He’s the one who did a great job on the surgery. The one who said, when we went for the follow-up, that he only needed to see her ever again if she felt anything in her neck. And when she did feel something in her neck I had to jump through 12 hoops to convince him he should see her. And then when he saw her, he proclaimed the lump a salivary gland and told us to return “one more time” in a few weeks.

But then there was that horrendous week in the hospital. And while she was being treated for gastritis, a hematologist felt her neck and said, “It’s a lymph node.” So they sent her for a sonogram which said it was a lymph node.

So when we went back to see the surgeon and brought him the sonogram report he got annoyed and ordered his own ultrasound, which we got to wait 3 hours for. And then he called me to tell me everything was fine, even after the 45 minute exam where the tech measured the lymph node in her neck. So we were good to part ways until I asked for a copy of that report too.

And 10 minutes later my cell phone rang telling me doctor “I am sure it’s fine, but just in case,” wanted to see her again. So after some haggling we arranged for June 16th at 1. Which was ok. Until they called me Friday to tell me I could come in at 9:30 or 10:45. “How about 1, like you said originally?”

So the appointment was set for 1, and I punched out of work at 12. We got to the hospital at exactly 1 (a 20 mile drive) after some typical traffic, and a near miss of a three car accident in front of us on the highway (thank you angels) on line for the parking garage. I called up to let them know we’d be a few minutes. And we sat. And we sat And we sat.

Finally we began to inch forward just a bit. Then there was just one car in front of me.

And he was not paying a bit of attention, as a large black SUV cut right into the front of the line.

Now at times like this I try to focus. Maybe there was a medical emergency. Maybe… Maybe…

So as much as I wanted to get out of my car screaming, I held my composure and talked about all the reasons they might have done that. Until a hospital employee, likely late for work, surfaced as the driver. He left his car across the sidewalk, took the ticket from the attendant and raced into the hospital.

It was 1:35.

And then I noticed some scurrying.

I thought the car was stuck.

It turns out the self-important line cutter had taken his keys- blocking the entrance and causing the line of 20 cars behind me to continue to grow.

The car was booted and moved.

We got to the appointment around 2.

The doctor spoke to Meghan. He asked her how she was doing. She told him about her pain. And about her throat clearing. And about how tired she is. She mentioned working hard to get so swim practice.

I don’t think he heard a word.

He felt her neck and proudly proclaimed he felt nothing. By now I was so tired of this I just wanted to get out. I figured we were done. I was glad he could feel nothing. If only I trusted him. Truth be told, I haven’t put a hand on her neck in 4 weeks. There is just no point.

“I want to see her at the end of the summer.”

WHAT?????????????????????????????????????????????????????????????????????????????????????????????????????????????????

3 visits ago he never wanted to see her again. Now he has ultrasound and 2 visits at which he told me she was fine. Let it go. Unless of course, he just doesn’t quite trust himself…

“I’m glad she’s feeling so well.”

EXCUSE ME?????????? Did you just see MY kid? Because MY KID is incredibly polite, and often very positive. She is articulate and bright, but she will NEVER tell you she feels WELL. She doesn’t believe in lying.

Some days this is like a bad movie. Or a dream where your finger is stuck in the door and it keeps closing over, and over, and over again.

August 18th.

Damn.

So much for a month without doctors.

When do you, as the Mom, put an end to it? Knowing that any “miss” falls right on you, it’s so hard to defy their recommendations, even when their competence can be questioned.

Rheumatology on the 30th. GI on July 2nd, and Pediatric Endocrinology AGAIN on July 3rd. And that’s just the first week.

I guess I better plan something fun for the 1st. Something worthy of a stepping stone for that bridge…

Her entire right side hurts to the touch tonight. Every natural pain remedy I research has something her reflux doesn’t allow.

She fell asleep tonight reading her Bible. Our Pastor sent her a long letter with some great verses of comfort. She hasn’t stopped rereading it.

Sigh…

Two hours to get in. Two hours to get home. Less than 30 minutes on the floor of the hospital.

“This is getting old Mom.” Wise kid.

“‘Cause what if your blessings come through rain drops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You’re near
What if trials of this life are Your mercies in disguise” – Laura Story