Ice Cream for Dinner

You have to give the body what it needs.  Tonight mine needs ice cream.  With hot fudge.

Normally I’m a protein shake, green tea kind of gal.  But I don’t really believe in drawing hard lines anywhere, because hey – you never know.

Today was day 3 of a seemingly impossible root canal.  Our very capable dentist deemed it in the 5% of root canals he has to send out.  That was after almost 90 minutes in his chair 2 weeks ago.

The root canal specialist looked at it and validated the dentist.  She said he was right.  It was going to be tough.  That was just the consult.

Last Tuesday, and again tonight I spent an hour each time with my back lower left molar being attacked.  My jaw hurts.  My face aches.  To hear it wasn’t finished was no fault of the dentist.

It was “odd,” “unusual,” and “the most difficult root I’ve faced in a while.”

Blah, Blah, Blah…

She has to talk to the dentist to decide the fate of my less than one year old crown.  In my gut I’m not so sure the tooth will survive.  Time will tell.

My girl, thankfully used Uber to get home from school, so that she could get the dogs ready.  Lucky, our older dog had a consultation to consider surgery to remove a mass on her side.  She’s 12.5, bloodwork to determine if she’s a candidate will be in Friday.

And that’s just the normal, happens to everyone stuff that has gone on this week.  Is it really only Wednesday?

One day at a time I keep reminding myself.

We re-upped our commitment to Physical Therapy last night after a visit with the orthopedist last week.  He voted for 12 more weeks for the shoulder tendonitis and the possible “plica” in the (formerly) GOOD left knee.  Thank GOD for Dr. Jill.  Without her knowledge, patience, humor, adaptability, passion and skill I have no idea where we’d be.

He also asked for an MRI of the left knee “just in case.”  It’s on hold for now.  We are literally in a point in life where we have to conserve scans.

The brain MRI is February 20th and that has to be priority.

January 17th we saw the adolescent gynecologist.  She reorganized the hormones, and put in the order for an abdominal sonogram.  Its time to check and make sure that uterus is behaving.  As soon as we can get it on the calendar.

calendars

I sent a lengthy summary of 2017 to her geneticist asking that he reevaluate a few areas of concern.  I sent the Email Sunday.  By Monday I had been politely dismissed.

All my hopes rest with the pediatric endocrinologist.  Appointment is 2/9.  He’s gotten a few articles and knows I’ll be pleading for a trial of an alternative thyroid medicine.

I’m starting to lose faith in the medical professionals we see.  And I had thought we’d conjured up a great team.

Cowden’s Syndrome is time-consuming and exhausting.  It’s hard to see unless you’re in the middle of it.

And sometimes when you can see it every day – because you have to- you know that sometimes you need ice cream for dinner.

And that’s perfectly ok.  I may even go add a glass of wine.

#beatingcowdens

Grandma – The Long Goodbye

Real life continues around you whether you want it to or not.  And over the last few years as we have juggled Cowden’s Syndrome, my dear Grandma has battled Alzheimer’s Disease.  This disease is far too common and not for the faint of heart.  When it was named “The Long Goodbye”  it was appropriately so.  That goodbye came to its end for my Grandma last week, and her “Celebration of Life” was today.  Her influence on my life can not be understated. 

While I am acutely aware how lucky I am to have had my grandparents for so long, there is a special kind of loss when you’ve been fortunate enough to have grandparents into adulthood.  Below is a transcript of the eulogy I delivered today.  Pictures were just added for good fun.

It has been so hard to gather my thoughts.  I love to write, but it is a formidable task to speak to the end of an era, while teasing apart the pair that was “Grandma and Pop,” in order to spend a few moments remembering Grandma.

Grandma was small and strong, faithful, feisty, loyal, fierce, firm, and dedicated.

Besides being “small,” which is a ship that sailed for me decades ago, I aspire to be like my grandmother.  Sometimes she said very little, but what she said was always full of meaning.  And it was not the fluffy philosophical stuff.  It was straight to the point.  You always knew where you stood with Grandma.

I grew up on the first floor of the two family house they resided in for over 50 years.  I spent some formative years there, from 5 to 15, where I was loved unconditionally and held to a high standard all the time.  Those years shaped my character, and I will be forever grateful.

I can remember learning to keep myself busy, sorting buttons from a glass jar, while I sat on the kitchen floor.  I remember watching Grandma cook, and iron – two things I DEFINITELY did NOT pick up from her.  I remember tasting cookies, and waffles, and the best lemon meringue pie I’ll ever eat.

She was active her whole life.  She took walks all around the neighborhood for many years.  I watched her climb up and down the two flights of stairs to the basement to do laundry, and up again into the attic to get whatever was stored in their “pantry”.  That attic had a pantry that could have helped the block survive a natural disaster.  They were always prepared.

I remember fighting with my sister Lisa, back when it was just the two of us.  I remember being scolded, firmly (and we’ll leave that there..) and being told we needed to look out for each other.  Now we are more grandchildren, and great-grandchildren too.  I remember.  And we will.  We all will.

I remember the times I disappointed.  Thankfully, there weren’t too many, but there is one that I remember like it was yesterday.  Goodness, it must have been almost 40 years ago when I was touching the nativity scene that I had been told to keep my hands off.  I knocked over the donkey and his ear fell off.  Grandma was mad.  And, even after Pop glued the ear back on I saw that ear for the rest of the years that the nativity went up.  Grandma never said another word about it after that day.  No doubt she forgave me.  But, that feeling of disappointing her was not one I ever desired to relive again.

I remember playing card games with Grandma.  I can remember Parcheesi a little, but it must not have been my favorite.  What sticks out in my mind are “King’s Corners” and “500 Rummy”.  I learned so much more than the rules of the games.  I learned that Grandma was not about giving away easy wins.  I learned that if you wanted to win, you had to work for it.  I also learned that sometimes you lose.  And, being a gracious loser is probably more important than winning.  Life lessons.  Thanks Grandma.

I learned how to be frugal after learning all about the Great Depression and the stories of truly having nothing at all.  She didn’t share those stories to garner pity.  She shared them as an explanation.  She shared them as a motivation as well, although she may not have realized it.  You see, I learned that sometimes people have absolutely nothing, and it’s just not their fault.  I learned to work hard, establish a reputation, and to give with a giving heart, with no expectation of return.  I was given gifts.  Through the years I received many material gifts, but the ones forever etched in my heart are the emotional gifts, of love, support, and encouragement.

For years I learned the value of being able to kiss my grandparents goodnight.  Our family was not super-affectionate, but still, there was a lot of love.  And, so much love came from those goodnight kisses, that I still remember today to ALWAYS kiss my family goodnight.  I learned that there is no promise of tomorrow on this earth, and I watched for years as Pop stopped to kiss Grandma goodbye before he left the house for any reason.  It was in those moments I promised myself I would settle for nothing less than a man who loved me the way Pop loved Grandma.  I did not settle Grandma.  And I understand the beauty of loving and being loved.

The days are sometimes long, but the years are short, and our family grew.  And as each generation brought more love into her heart, I understood the value of what we had.  I understood it, and tried to soak it up every chance I had.  Most people are not as fortunate as we have been.

Family Christmas 2015

Grandma’s mind started to give her trouble many years ago.  No one talked about it much.  We just quietly noticed.  Although, I suspect none of us noticed as much, or as soon as Pop surely did.  Maybe it was the depth of his love that motivated him to care for her alone for so long as she slipped away.  I don’t think we’ll ever fully understand, but it was remarkable.  A love story like theirs is almost unheard of in this generation.  It spanned time and space and well over 70 years.

And when the day came that Pop was no longer to be with us, Grandma gained residence in Clove Lakes Nursing Home.

For almost two years the staff of 6A got to know her.  They don’t have an easy job.  You have to have a special heart.  But, they do it with compassion and integrity.  They took the days she lashed out in stride, and sat and talked to her on the other days.  They learned of a woman, who even with a “broken filter” loved God, her husband, and her family.

Some time around Thanksgiving, Grandma stopped eating solid foods.  And although she would, at the start of it, take some Ensure, slowly she transitioned to an all Ginger Ale diet.  And, if you ever bad mouthed Ginger Ale, I’d like to tell you to consider it’s life sustaining properties.  Grandma lived well over a month on Ginger Ale!

For only the last two weeks or so, Grandma spent most of the day in her bed.  It was more comfortable for her thin, weakening frame.  And it was during those visits, Ginger Ale in hand, that we had some of the most remarkable conversations.

Long had passed the day when Grandma knew who I was.  I asked her one day if she knew me, and she gave me a crooked smile and shook her head.  She said simply, “but I know that I love you”.  And, that was quite enough.  I asked if it was OK if I called her Grandma, and she said, “yes”.  So, that was how we rolled.  It didn’t matter if she knew my name.  It mattered that her face brightened when I walked into a room.  The love was deep in her heart.

I started jotting down some of the things she was saying, so I’d have them to look back on, and I have to tell you, I had some good laughs these last few weeks.

Grandma was in her clearest voice saying the Lord’s Prayer one day very recently.  And as she said, “Lead us not into temptation,” she paused, opened her eyes, looked at me, and said, “That’s a bad one…” and proceeded to finish the prayer.  Right to the point.  I got it Grandma… don’t worry.

She prayed a lot those last few days.

She also asked for a bat one day.  Trust me, she had no interest in playing ball.  She wanted a bat to get after one of the most gentle aides on the floor.  Marlene laughed and never even paused while she carefully and lovingly repositioned Grandma.  I was in the room a few days later when Grandma told Marlene she loved her.  That was Grandma, right telling exactly what was on her mind – to the end.

She talked about Pop too.  One day she said during her prayers, “And my darling Ed, don’t forget him.  I bless him and I pray for him.  He’s my best friend.  He’s been my best friend a lot of years…”

She told me she “had a nice time”.  She talked about a trip that she initially didn’t want to take.  But, she came around.  She said, “I have to go with my husband and my chocolate”.  She said, “I have to trust”.  And she told me Jesus died so heaven was “guaranteed”.

The day she left us we played music for her.  With the help of the internet we pulled out her favorite hymns.  She couldn’t talk much, so we played, “My Jesus I Love Thee,” “Amazing Grace,” “What a Friend We Have in Jesus,” “I The Lord of Sea and Sky,” “Beautiful Savior,” “How Great Thou Art…” The list went on.  And, with each passing song she seemed to settle.  She fell into a peaceful sleep.  She was finally almost ready.

Grandma and Pop are back together again now.  I remember after Pop died, and Grandma could not really process his passing, the decision was made not to tell her.  We were told that there really was only a door between them, and the amount of time they’d be on opposite sides of the door was short, especially relative to the time they were together.

Truer words could not have been spoken.  And, as much as we will all miss them terribly, there are people who are just better together.  Grandma and Pop were two of those people.

 

Grandma’s passing marks the end of an era. In addition to being our matriarch, she was the last surviving of the 6 children in her own immediate family.

Grandma and Pop may no longer be here with us, but they leave behind children, and grandchildren, and great-grandchildren, and friends, each with personal, specific, life altering memories.

I have no doubt all the angel choirs are singing today.

I’ll leave you with the prayer Grandma said at the end of almost every Lord’s Prayer this week- “Lord, bless us and make us a blessing to others.  AMEN!”

December 30, 1945
                                     A love story that knows no end…

 

 

Sometimes GOOD Things Do Happen…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

HOPE right now is spelled ECHO.

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

Emergency Children’s Help Organization – Donation Page

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

Forever,

#beatingcowdens

More questions than answers…

 

I haven’t written regularly and it is wearing on me.  I keep putting things in front, waiting to be ready, to be finished so I can focus.  Except life is really busy.  And it keeps getting busier.  So, while I’m really dating myself…


While I will never ever possess even a fraction of Ferris Bueller’s 1980s spontaneity, I am constantly working on this reminder.  I’m a work in progress.

Today we stopped.  We sat together.  We watched a movie.  We enjoyed each other.  It was fun.  I need to remember to do it more often.

I find myself struggling to keep the story together, while respecting the privacy (she does preread every post before they publish) of my teenager, and maintaining the authenticity of this journey we are on together.

I always try to be positive, and to put a positive spin on everything.  It’s how I cope.  It’s how I press on.  But, it is the same reason it’s been so hard to write.

The cold hard reality is that even when we are conscious of our many blessings, sometimes having a rare disease, THIS rare disease, really just sucks.  And, as much as you work to not have it define you, it becomes so intertwined with who you are, that it can become difficult to tease the two apart.  In the 6 years since our diagnoses she’s, gone from 3rd to 9th grade.  Those are some pretty formative years.

The struggle to stand apart from the disease that takes so much of your time and energy is real.  As a teen the level of self-awareness is naturally high.  The fear of judgment is one we can all remember.  The desire to stand alone, stand apart, and fit in, while not compromising yourself is one I remember as if it were yesterday.

My girl is strong.  She is physically strong, as she recovers from countless surgeries, and fights her way back into the pool time and time again.  She endures physical therapy.  She navigates countless flights of stairs, and is constantly challenging herself to do more.

She is mentally strong.  She has a work ethic that is impressive, and grades to back it up.  She reads.  She questions.  She thinks.

She is morally strong.  She has ethics that often impress me, and she will not step away from who she is, even for a moment.

She is emotionally strong.  She refuses to stay down, no matter what life tosses at her.  She handles stress, disappointment, and struggle, with a poise many adults I know are lacking.

She is strong.  I know she is strong.  Anyone lucky enough to meet her knows she is strong.

She also suffers with PTSD, and severe anxiety.

I see no conflict between her being strong, and suffering.

I watch the age of diagnosis for PTEN mutations getting younger.  I see in this blessing and curse.  It is a wonderful thing to have the mechanism by which we can survey and protect.  It is also a difficult thing for an intelligent child to have to shoulder.

Clearly, her PTSD is PTEN related.  There are only so many surgeries, hospital stays, IVs, blood draws, MRIs and other medical dramas one can face before memories are haunting.

The anxiety- we’re working on it.

I have some theories.  And I will press until every one of them is shot down, or validated.  Her history indicates that she has always had some metabolic issues.  Some were first addressed by an alternative medicine doctor beginning when she was 2.  I watched things resolve that I thought could never get better.

When her thyroid was removed in 5th grade, just shy of 4 years ago.  I knew then it was not a good time.  I also knew it was not our choice, as the recent biopsy result with 19 nodules, 5 of them suspicious for malignancy, prompted the endocrinologist at the major cancer center to force the total removal.

Fortunately, it was a benign thyroid.  However, that thyroid, no longer in her, now needed to be replaced synthetically.

I was 20 when I lost half of my thyroid.  That was hard.  This, well, it was just unimaginable. Because, anyone who understates the importance of the thyroid for every single function in the body, in my opinion is under-informed.  The endocrinologists are trained to look for one number on a piece of paper and make every decision based off of that number.  Except, we are people.  We are individuals.  We are not numbers.

It took just shy of 2 years before even that number, the TSH (Thyroid Stimulating Hormone – which by definition should not IMO be the “go to” number in someone with NO thyroid to stimulate) stabilized.  It also required a change of endocrinologists to get one to listen to me practically scream that her body was not converting the synthetic T4 to T3.  I may not have been a good chemistry student, and I may not fully understand WHY she does not process synthetic anything very well, but I confidently know it to be true.  This new endocrinologist was willing to give a low dose of T3 a try alongside the T4.  Finally the “magic” number stabilized.

Looking back I believe I was lulled into a false sense of security.

There was so much going on those years.  Middle school is tough for every student.  Factor in 7 surgeries in 3 years and its easy to see where things got complicated.

Looking back again, maybe I should have seen or thought… but there really was no time.

Excessive menstrual bleeding – nonstop for months, led us to an adolescent gynecologist.  That led us to a pelvic ultrasound, which subsequently led to a finding of “abnormally thickened uterine lining.”  The D&C pathology showed cellular irregularities, highly unlikely in her then 12 year old body.  But, we live as the “highly unlikely.”

Even as we were nudged towards hormones, I should have seen.  But, it’s easier to see in reverse.

The need for hormones to thin the uterine lining was non-negotiable I was told.  The IUD was an unacceptable solution to both of us.  So, she was given progesterone.

The medication is pure evil, I am convinced.  She handed me the pill bottle one morning and told me to get rid of it.  She was done with it.  I shudder at what could have become of things if she did not possess the inner strength I spoke of earlier.  Her level of self-awareness is eerie at times.  I am grateful.

So, we went a while with nothing.  And the body began to act up again.  This summer we agreed to try a birth control pill.  And, still, several changes later, things are not where they should be.

Most doctors want to make all sorts of sweeping generalizations.  They want to put everyone in a neat box.  Life is messy.  Rare disease life is RARE by definition.  When you are 1 in 250,000 you just don’t fit in the box.

I first noticed the anxiety increasing in middle school.

“Middle school is hard for everyone…”

The PTSD diagnosis finally came in May of this year.  But, I knew even then it wasn’t the whole picture.

This summer we almost cancelled Disney.  The pain from her periods had become intolerable, totally crippling her.  I called the gynecologist in desperation.  She was glad to hear me finally agree to the birth control pill.  I was desperate and hesitant, the progesterone nightmare was not lost on me.  It was the classic “rock and a hard place” story.

High School started out a little tumultuous.  The school she thought she’d attend underwent major changes over the summer.  She ended up relocating a few days into the school year.  But, she loves the new school.  The kids are nice.  She has more good teachers this semester than in 3 years of middle school.  The high school swim team was strong.  So why was the anxiety quickly melting into full scale panic attacks?

She works so hard to keep it all together.  She tries to keep it hidden.  She is so aware.

The panic settled back into general anxiety, but that anxiety spread to just about everything.

In December I adjusted my work day through FMLA to be able to pick her up at the end of every school day.  We spent a lot of time working through so much.

And somewhere in the middle of working through all of this, as people were so quick to offer medication for anxiety, I had some thoughts.

Why had the gynecologist and the endocrinologist NEVER spoken about interactions between their respective medications when both were prescribing hormones?

Simply because her lab tests for thyroid function remain in the laboratory range, there was never a question.  No one noticed this actual human being in front of me is struggling.

Why are we so quick to write off the unusual as impossible?

Why won’t we try anything to keep a bright, articulate, in touch 14 year old OFF as many medications as possible?

What if her T4 to T3 conversion, which was always a problem, was masked and not solved by adding a synthetic T3?  What if this anxiety has been building for all these years, and exploded at the insult of additional, yet necessary synthetic hormones?  What if the answer is harder than adding more medication?  What if it will take research, theories, and some “out of the box” thinking?

How do I convince them she’s worth it?

While my PTEN Facebook friends are sending me article links, I am composing my thoughts before writing a more organized, clinical version of these questions to her doctors.

All of this while seemingly insignificant head congestion is cramping her style.  I am not sure exactly where it fits in.

The ENT ordered an MRI of the brain to check the sinuses.  Turns out the sinuses are clear.  Except there was an incidental finding of a brain lesion 9.5mm of undetermined significance.  The new neurologist is confident its not a problem, but we’ll have a follow up MRI on February 20th.

In the mean time – no one will touch the congestion other than to tell her it’s “anxiety.”

She deserves better.

So, we will press on.

One year ends and another begins.  We’ve grown, we’ve learned, we’ve laughed, we’ve cried.  Yet still there are more questions than answers.

I have a feeling that’s pretty much how it will be.

This is life

#beatingcowdens

 

 

 

delete

Don’t you sometimes just want to hit the delete button?

We were going through vacation photos and I was struck by how easy it was to eliminate images that we found unflattering.  We were able to simply click a button – and they were gone, for no one else to ever see.  Eventually our only memories of the trip would be reliant on the images that remained, so in some ways it was almost like those unflattering moments never happened.  Right?

I love my social media accounts.  I do.  But sometimes I scroll through feeling a bit down, inadequate and lonely.  Everyone looks so happy.  Everyone is surrounded by friends.  Everyone’s house is clean.  Everyone is taking wonderful vacations.  Everyone is resting in their pool on a weekday afternoon…

Then I realize I do the same thing.  No one wants to see a picture of my unmade bed, my tears of frustration, or the times when the family doesn’t really like each other too much.  No one wants to hear videos of me bickering with insurance companies, or dealing with the day-to-day realities.  No one wants to know how often some type of issue simply keeps us house bound.

I started this summer as I do every summer, full of hopeful anticipation that it would bring health, and rest, and time to read, and do lots of nothing.  And, like most of the summers before, that is not at all how it turned out.

I could insert a photo of my unread books, or closets that never got cleaned out, or the files that never got shredded.  I could flash you a shot of my EZ Pass statement, for the countless trips to the doctor… you get the idea.

As we journey through this world of rare disease, and chronic illness together, I use this blog to keep my perspective straight.  Yet, some days it’s hard not to feel like the plate is just a little too full.  And somehow, some way…

This summer Cowden’s Syndrome took a run at us- hard.  The knee has been, and continues to be a work in progress.  The isolation it causes is hard to describe.  The sinus infection caused chaos because the medications wrecked a sensitive stomach.  The knee medicines added fuel to the fire.  Renegade hormones took their toll too.  We are still deep in this journey to figure out PTSD and its manifestations, and ramifications, and where we all fit in.  Cowden’s Syndrome has done some damage.

Yet, despite all the things we want to delete from the summer, there were some beautiful, simple, and just fun times.  There were friends that visited.  There were connections with dear old friends, and some new ones too.  There was a fun birthday party – something we have not had in YEARS!  And, there was Disney… still magical.

With all this on my mind as I went through the vacation pictures, I opted to save some that in previous years I might have deleted.

It was late one night and Meghan wanted to go back to the Magic Kingdom.  I took her back myself.  We made our way up main street and headed to “Dumbo” the first ride she ever rode in Disney – 10 years ago.  We waited on line, and rode our elephant side by side.

I’ve never been so pleased to take a “selfie” in my life.

Then we used a Fast Pass for the Seven Dwarfs Mine Train.  Three years ago I didn’t even ride roller coasters.  Now, I’m so used to the ones in Disney I don’t give them a second thought.  As we headed over the first hill the sky lit up with the fireworks display over the castle.  We were in awe.  I think it will probably be one of my most magical Disney memories ever.  This picture, although not  flattering, captures that moment so well.

Most Magical Moment

There were many moments this summer I wanted to “delete.”  But, then there were others.

So in an effort to give you a little more “real” and a little less “facebook fancy” I decided to keep these.  And, I even decided I like them.

Because life is not pretty.  Sometimes its downright nasty and ugly.  Most of life is not us in our best clothes, and hair.  Most of life is sweats and sneakers… that are hopefully clean and matching.  And if we delete all of that, and spend all of our time looking for the perfect, well, I think we’ll miss some magical moments.

Cowden’s Syndrome is not going away.  Plans are going to get messed up and changed at inconvenient times.  There are going to be lots of housebound days full of isolation and loneliness.

But, as I go through my camera roll, I am going to concentrate on deleting less.  I am not going to judge a picture by a random perfection scale.  I’m going to judge it by the magic within.

We asked a Disney employee for a quick shot on the iphone…

And with this girl, I will learn every single day.  I am just so lucky to be her mom, and I won’t delete any of it simply because it’s hard.

We remain forever

#beatingcowdens

To My Girl On Her Birthday

Sometimes you’re on top of the world.  Stay HUMBLE.

Sometimes you’ve hit a low.  Stay HOPEFUL.

The Lokai bracelet nailed it with real world advice.

Meghan as you turn 14, there is little more I need to tell about our back-story.  Anyone who wants to know whatever we are willing to share, need only look through the posts on this page.

Tonight my thoughts are on moving forward.

You’ve seen some low lows these past years.  But, you have also been blessed with some very “high” highs.  You are no stranger to struggle, but you are also well-acquainted with overcoming any obstacle, large or small, even if they are thrust repeatedly into your path.

You are true to yourself at all costs, a rare quality in a teen these days.  And while you wrestle with normal questions, I can tell you that your values, developed through your own processes, are strong and logical in that complex brain of yours.

We spend a lot of time together- more than most mothers get with their daughters.  And, while I am not a fan of the medical circumstances that cost us hours on the Belt Parkway, the Gowanus, the BQE, and the FDR, I am so grateful for the HOURS we have to talk.  About everything.  I am grateful that we have learned a mutual respect, and have even (almost always) safely figured out ways to agree to disagree.

The person you are impresses me.  And not just because I am your mother.  You have worked through adversity your entire life, and you have become stronger, wiser, introspective, and compassionate.

You have learned you actually enjoy (many) people.

You want to help others who have lived lives full of struggle.  And you will.

All of this will shake out with its details in the years to come.  But I want you to always remember this:

Your recent PTSD diagnosis was not a shock to either of us.  Nor is the “head-on” way you are meeting the challenge of learning more about yourself.  You will not sit back.  You will not let life happen with out you.  You will always persevere.

 

You my dear are taking that same pressure that can burst pipes, and you are “making diamonds.”

As you face the year ahead, and you look at the new adventures you will undertake in High School, move forward with the knowledge simply that the past happened.

And now – It’s the present.

While some things will always remain the same, some things will change all the time.


Learn. Grow. Laugh. Take risks.  You might get hurt, but you also are likely to have some of the most magical experiences of your life.

Set goals.  Carry them through, and when you need to – modify and reset.

I will be forever nearby, your cheerleader, and your guide on the side.

We are

#beatingcowdens

TOGETHER.

The days are sometimes long, but the years are short my love.

Savor them. I know I do.

Happy 14th Birthday!

The Comeback…

“…There is no mountain you can’t face

There is no giant you can’t take

All of your tears were not a waste

You’re one step away…” Danny Gokey

We listen to a good deal of Contemporary Christian music.  There are other tastes among us, but often, especially in the car – we listen to this.  It’s been a few years since we’ve had a church where we all felt comfortable and at home, although we possess strong, deeply rooted faith.  This music helps keep us focused when things can otherwise seem blurry.

This particular song surfaced a few weeks ago.  Meghan was battling to make a comeback from knee surgery 7, and seven was NOT a lucky number.

When you’ve been through the operating room 18 times and it’s still a week before your 14th birthday – you can call yourself somewhat of a professional at recovery.

We left the hospital with our list of directions.  We went to the surgical follow-up.  We scheduled PT.  We even held an extra week before restarting swim.  There were crutches for a very long time – used responsibly.  So, when she had done everything right, and her body decided to push back – hard, she was understandably angry and very frustrated.

No one really had a solid explanation for the fluid that overtook that knee almost 5 weeks post operatively.  But, there never really is a solid explanation.  I’d like to say we’re used to it.  But, I don’t like to lie.

There were more crutches, and more PT with the BEST PT in the whole wide world.  (We LOVE Dr. Jill – because she works on the WHOLE kid.  She gets that they are more than the body part giving them trouble. I know of NONE quite like her.)  There was increase in strength and range of motion.  There was a return to (half) swim practices.

There has been diligent icing after swim.  There has been stretching and strengthening because, quite frankly, she WANTS to feel better.

We joked around during the month of June, how nice it would be if we could make July a “doctor- free” month.  We longingly imagine the same scenario every year.  What if summer could be time to relax?  What if we could take day trips?  What if we could come and go, and rejuvenate?

I just counted 20 medical appointments between us over the last 31 days.  There are 2 more tomorrow.

Chronic illness is a real drag at any age.  When it happens to a child or a teen it makes everything that is already hard about growing up – even more of a challenge.

When you are in an almost constant state of recovery, you can find yourself tired.  Fighting so hard just to get back to where you were can make you feel like a hamster stuck in a wheel.

Chronic illness, constant pain, surgical recovery, ongoing surveillance, and all the other “fun” things that accompany Cowden’s Syndrome – or any other “it’s sticking around FOREVER” illness can leave you wiped out.

It’s hard to build relationships, friendships, or even a social group when you aren’t able to do so many of the things people take for granted every day.  There are days you quite simply run out of “spoons.”

https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

But, in life there are more times than not that we have choices.  I try to model for my daughter, but so often she models for me.  You can choose to sit alone.  You can choose to let pain, fear, anxiety and frustration take hold.  You can choose to be sad.  You can choose to be mad.  Or you can realize that life is hard.  Everyone’s life is hard.  Life is also full of blessings.

When you realize that this is your life, and you decide you’re going to make the best of it- that’s when you dig in. You climb up that mountain, one step at a time…

I admire many things about my daughter.  She is not perfect – neither am I.  But in her soul, there is a “Never Give Up” attitude that permeates all things.  There is a constant quest for equity and justice, not just for her, but for all she interfaces with.  There is a compassionate need to help others.  There is a desire to be successful in spite of her circumstances – not because of them.

She always says she loves to swim because regardless – she has to meet the same time standards as everyone else.  Somehow it makes each comeback a little sweeter.

No one else would likely know, or realize, or remember.  But, we know.

First year on the high school team.  The season starts right after school.  She’ll be ready.

That’s why we will always remain

#beatingcowdens

 

“…There is no mountain you can’t face

There is no giant you can’t take

All of your tears were not a waste

You’re one step away…” Danny Gokey

This video is worth your time…

 

Danny Gokey – The Comeback 
After a season of nightfalls and pushbacks
After the heartache of wrong turns and sidetracks
Just when they think they’ve got you game, set, match
Here comes the comeback
Just cause you laid low, got up slow, unsteady
Don’t mean you blacked out or bought out you’re ready
Just when they think there’s nothing left running on empty
Here comes the comeback
(chorus)
This is your time, your moment 
The fire, the fight, you’re golden
You’ve come so far keep going
Here comes the comeback, comeback
You feel the lightning, the thunder, your soul shakes
Under the roar of the heaven, the tide breaks
And from the ashes you will take your place
Here comes the comeback
(chorus)
This is your time, your moment 
The fire, the fight, you’re golden
You’ve come so far keep going
Here comes the comeback, comeback
There is no mountain you can’t face
There is no giant you can’t take
All of your tears were not a waste
You’re one step away
Just when they think they’ve got you game, set, match
Here comes the comeback
(chorus)
This is your time, your moment 
The fire, the fight, you’re golden
You’ve come so far keep going
Here comes the comeback, comeback