Dear Meghan… Mother’s Day 2018

Dear Meghan,

Almost 15 years ago you entered this world kicking and screaming.  You scared the heart out of us, the doctors, and the nurses.  The NICU nurses called you “Miss Attitude”.  Even in distress that August day you showed them all you were not to take anything without a fight.  You made me a Mom under the craziest circumstances, and looking back, maybe they were fitting.  How could we know back then, when we were discharged, a few days later, and all of NYC went black in the blackout that no one will forget, that was just the beginning of all things epic?

I look at you now, taller than me, beautiful and smart, athletic and talented, and I burst with pride.  You are good in your core.  You are pure in your heart.  You hold yourself to a fiercely high standard, and you hold others there too.

We’ve long passed the point where summarizing your history is easy, or even practical.  Truth is, most people’s heads would explode to hold inside the medical journeys we’ve taken, and the emotional bumps and bruises along the way.

You made a decision many years ago, that your struggles would be only part of you, and that they would NEVER define you.  You want to achieve, and you do achieve, in spite of your struggles, and not because of them.

Most Magical Moment

Facing your teen years with the cloud of Cowden’s Syndrome always hanging nearby is daunting, to say the least.  You possess knowledge, statistics and realities about your own body that no one your age should have to try to understand.  You have more memories of trips into and out of operating rooms than most people would ever know in a lifetime.  You have been held down, poked, prodded and examined so many times, even I sometimes try to forget.  You have been through Physical Therapy and rehabilitation so frequently that we have the numbers for multiple surgeons and the best PT in the world, saved into speed dial.

Before you were 11 the threat of cancer stole your thyroid, and as normal teenage hormones kicked in, yours were just a bit more complex.  Precancerous cells in your uterus before the age of 12 necessitated more synthetic hormones, and your body… sigh.  Beat up and abused, no wonder it gets annoyed.

The PTSD (Post Traumatic Stress Disorder) diagnosis was not a shock, rather the exclamation point on the end of a very long sentence.  Before the start of the next paragraph, in what will be a very long story…

The struggle to deal with it takes place mostly behind closed doors, and most people would have no idea.

You just keep going.

It’s not a sprint, it’s a marathon.

The longer, and harder the battle, the more determined you become.

You excel at school.  You continue to make strides at swim.  You are learning to use the beautiful voice you were gifted with.

You are my pride, my privilege, my daughter and my friend.

You have strengthened my resolve.  You have helped me fine tune my “Mamma Bear”.

You have helped me learn self-restraint when I have had to allow you to handle things on your own.

You have helped me become a better human.

Sometimes, my dear, I want to scream, as your stubborn, rigid, principled self, clashes with my “I want to fix it” attitude.  And yet, I count myself lucky in this day and age to have a daughter who is so sure of her principles that she will not bend to the whim of the crowd.

I wish for you the ability to find joy and laughter.  I wish for you, to be able to smile among the good people you meet, and allow them into your world.  I wish for that the  kind souls you meet are able to understand that there is more to you than initially meets the eye.

I want you to know that you are good enough, and that you are enough.  Yet, I want you to remain hungry and goal oriented and kind and compassionate too.

A wise woman (your grandma) once told me, you do more changing in your 20s than you ever do in your teens.  You will continue to grow and learn and change, and develop your personality.  Set your goals, meet them, exceed them, or rewrite them.  Life is fluid, and full of change.

No matter how hard things get, never ever lose HOPE, and NEVER GIVE UP.

You gave me a beautiful necklace today.  The compliment of being referred to as “Wonder Woman” is about as high praise as a mom of a teen could ask for.

If I possess those qualities they are because of you.

We will continue to take this long journey.  The road will never be smooth.  But I would take no other path if it meant traveling without you.

Together we remain #beatingcowdens.

Thank you my dear.  Thank you for allowing me to be part of your world.

Thank God for selecting me as your mother.

Love you always,

Mom

 

 

Dear Mom…. Mother’s Day 2018

Dear Mom,

You’re small but mighty.  You’re a force to be reckoned with.  You are a role model, and an inspiration.  You are a survivor.  You never give up.  You were my very first hero.

I’ve learned a whole bunch through the years, and I’m quite sure I still have a ton to learn.  This year, as you celebrate your first Mother’s Day without your own mom, the enormity of that is not lost on me.  I just wanted to make sure you know that.

You raised three of the most different humans imaginable.  And, yet, you did an awfully great job on each of us.  That’s mostly because you did the best you could to give us what we needed.  An impressive juggling act.

For years you told me “You’ll do more changing in your 20s than you ever did in your teens”.  Truth.  But, did you stop there so as not to scare me?  The changing in my 30s- I still shake my head in amazement.  And I’m quite sure now, half way to 50 – I’ll look back at 40-year-old me and find a stranger.

Nothing is easy.  Nothing ever was.  I remember.

Yet, I don’t remember a life couched in sadness or despair.  I remember focus, drive, determination, and a whole lot of Never Give Up.

I remember a single mom who worked two jobs so we could have all that we needed, and lots that we wanted.

I remember you positioning us with your parents, so that right upstairs would be stellar role models.  I know it must not have been easy.  We don’t always agree with our parents.  And, now, as a mom myself, I get how it might have been a challenge for you sometimes.  But, I can tell you with confidence, it was right.  Living downstairs from Grandma and Pop was a fantastic, life changing move.  Thank you.

I remember the hours you worked, in the city all week, and then on your feet every holiday and every weekend, serving other people’s parties.  I can only imagine how tired you must have been.  Only now do I have a much better idea.  And, I have a much better understanding of how you just kept going.

You made choices.  You chose to keep us involved with all our families.  You could have chosen differently.  You had every right to.  Thank you for choosing to allow me to choose.

You modeled for me, things I never knew I’d need.

And every day, as I dig deep to give everything I can to Meghan, I think of you.

You, and “The Little Engine that Could,” and Tinkerbell too.

Thank you for being tough as nails, and soft as a marshmallow at all the right times.

Thanks Mom, for the things I can put into words, and the things I can’t.  Thanks for the stuff you just know, and the things in my heart.

Please know, no matter how old I get, or how busy you think I am, a call, or a visit, or even a text with my Mom brings a smile to my face.

Every. Single. Day.

Happy Mother’s Day.

Thank you for preparing me for #beatingcowdens, long before we had any idea of what was coming.

I love you forever.

I love you for always,

Lori

 

 

Triage- A Way of Life

Triage.  The word hangs with me like the memories of countless Emergency Room visits.

Triage. Take care of the most serious first.

It’s the reason we might wait hours for stitches, and barely a moment for a trauma.

I get it.  It makes sense in the ER.  It also makes sense on the battlefield, or in other places where there is widespread injury to be treated.

The thing is, you typically don’t stay in those places FOREVER.

Places we equate with triage are not places of comfort.  And that’s where this life with Cowden’s Syndrome can get tricky.

You see, lately I can’t shake the feeling that life is triage.  24/7/365 damage assessment, and handling the most critical first.  Vigilant.  Hyper-vigilant.  ALL.  THE.  TIME.

When you live with a chronic illness, a syndrome that causes cancer by its very definition, it is so easy to get wrapped up in monitoring and preventative care.  And then there are the times that you go for those monitoring appointments and they require their own follow-up.  This condition can easily morph into a beast that can swallow you whole.

And we’re at it times 2.

What I refuse to allow this syndrome to do is take away any more from my daughter’s life  than it has.  To the best of our ability, she will do “teenage” things, and she will do things she enjoys.

But, lately that has become quite the juggling act.

I am monitored twice a year by endocrinology (post thyroidectomy), my breast surgeons, and dermatology.  I am monitored annually by gyn oncology, and oncology.  This is post-bilateral mastectomy (stage 1 DCIS) and post hysterectomy.  I am monitored every 5 years for colonoscopy.  I am also monitored with abdominal ultrasounds for 4 hamartomas on my spleen, and a cyst on my kidney.  This may not seem all that impressive, but those are just the appointments if everything goes well.  That’s not additional scanning, blood work and biopsies.  None of them are close to home either.

Not to mention, I am still searching for a local primary care doctor.  In addition, there is dental work, both routine, and the emergencies the stress from grinding my teeth keep causing.  I’ve been referred to another oncologist who specializes in genetic diseases, and I need to get in to see her.  I just completed vascular surgery, with its pre and post op appointments and recovery as well.

That’s just me.  Me, and my full-time job.  And, like every mother, my needs are not the most important.

My girl sees endocrinology twice a year.  She is still, 4 years post-op, trying to get thyroid function balanced.  She sees gastroenterology, and dermatology twice a year.  She also sees an adolescent gyn twice a year, courtesy of precancerous tissue already uncovered in her teenage uterus.  She sees a chiropractor every 2-3 weeks for pain management.  Right now, amid diagnosis of the small brain tumors, she is seeing neurology every three months for new MRI scans.  She sees orthopedics every 8 weeks.  They have been monitoring her knee for years, and recently stubborn tendonitis in the shoulder.  There have been a few MRIs of late.  She has seen physical therapy weekly since the fall, and is now working on twice a week.

She is tired.  Partially because of her schedule, and partially because of her sleep patterns.  Despite a regular bed time, she struggles to get quality sleep.  It is hard to turn her brain off, and for her to get rest.

She has developed Post Traumatic Stress Disorder (PTSD) and anxiety, secondary to consistent medical trauma.  She is working through it – but, like everything else, it is a great deal of work.

She is awaiting word that her service dog is ready.  The call could come any time in the next 6 or so months, but we are hopeful this dog will help her through what can be some trying times.

She is an honor student.  She is a swimmer – at least 5 days a week, for 12-15 hours a week.  She is in weekly vocal lessons, and a theater group that meets 3.5 hours a week.  She enjoys a local church youth groups.

She has food allergies – restricted from dairy, gluten and soy.  And seasonal allergies to all things pollen.

None of this includes normal things.  Like dentist and orthodontist visits, or even haircuts.

It is easy to get isolated.

She has a strong sense of what is right and wrong, and can be rigid in her perceptions.  But, life has shown her things most adults, let alone people her age, have ever seen.   Just as that strong mindedness flusters me, I refuse to try to break it down.  It is that same will that has gotten us where we are.

And where we are, is in TRIAGE.

My iphone calendar is with me everywhere.  I prioritize swim and theater over doctors when I can.  Physical Therapy is a high on the list right now for pain management and strengthening.

Vocal lessons keep her going, as she can sing herself through a lot of stress.  Theater is just a fun group of children, and I am not willing to sacrifice that.

I have a list by my desk of “next up” appointments, and because our availability is so limited, I am often booking months out.  We travel to most – NYC or LI.  Short on miles – but up to 2 hours each way – often.

We stack them when we can.  Two appointments are a bonus, three is a banner day.

And every year about this time I dream of a summer light on appointments.  I’ve yet to see it come true.  Truth be told, almost every school holiday and every vacation is cluttered with things we need to do, but would rather not.

There is a blessing in knowing what we are fighting.  There is blessing in having a warning system in place.  But, there are still some days when I’m totally overwhelmed that I wish I didn’t know so much.

Triage.

Triage means that right now the physical and emotional health of my teenager trumps all.

So she swims 5 days.  We do PT 1-2 nights after swim. We see “other” doctors midweek on the one day there is no swim.  We do voice, and theater on Saturday.

I make my appointments on weekends when my husband can drive.  I make my appointments a year out so I can stack three in one day in the summer and on February break.  I schedule our surgeries for February of Easter vacation when I can.

I plan our fundraiser now for October, so as not to give it up, but in hopes of finding an easier time.

I research at night.  There is always a need to learn what most of our doctors do not know.

I write, when I can.  I love it and I miss it, but time just doesn’t seem to allow.

Hair, nails, eyebrows, and things I used to enjoy are forced into holes in the calendar, every once in a while.

Dust builds in places I never used to allow it.

Friends, well I have to trust they get it and they’ll be around when there is a change in the current status of things.  I miss them.

Triage.

It starts early in the morning, waking up a teen who just hasn’t slept well.

It continues through the day – my job and her school.

After school is all about making it work.  Swim, PT, or whatever therapy the night brings.

There are often phone calls, requests for lab reports, or battles about IEP needs…  Emails go through the iphone.

Usually we are out of the house about 13 hours.

At night we pack everything so that we can be ready to begin again.

Triage.

Most critical right now is allowing my teenager to find her way, in school, in sports, and in her life.  Most critical is giving her very real scenarios where her disease does not define her, and she is able to achieve in spite of her challenges, not because of them.

In order to make this happen, everything revolves around her schedule.  There are opinions about that in all directions.  There are people who would tell me I am creating an entitled, self-absorbed human.  I don’t pay them much mind, because they haven’t met her.

When I signed in to be a parent I knew I’d be all in.  I just never saw THIS coming.

Balance needs to always be in place, where the physical needs of either of us are never overlooked.  However, non-essential appointments CAN, and WILL be scheduled around our availability.  She will be a happier, and more tolerant patient when she didn’t miss something she loved with three hours in traffic and two in the waiting room.

Triage is meant to be something you experience briefly in times of crisis.

The “fight or flight” response is not always supposed to be on.

But it is.

At this time in our lives we may not always make for stellar company, although ironically, we’d love to have more of it.

At this time, we may say no constantly, to the point where you stop inviting.  Trust me.  We’d rather go.  We actually enjoy your company.

At this time, we are so busy surviving, and taking care of the most critical needs, that anything not immediately essential gets passed by.

We are constantly evaluating order of events, but TRIAGE is fluid by definition.  Unfortunately there are so many situations and scenarios, it is hard to see through them all.

Even at our toughest times.  Even at our most overwhelmed days.  We can look around and find our blessings.  They exist in big things, like being able to physically attend 5 practices a week, and little things, like being able to WALK around the school without hesitation or assistance.

We are aware of those suffering illnesses far beyond our grasp.  We are aware and we are grateful for the health we do have.

We are also tired.  And lonely.  And often overwhelmed.  We also know this is the way the plan must go for now.  And one day it may change.

Triage is fluid.

Life is fluid.

We all do the best we can with what we have where we are.

And we remain steadfast

#beatingcowdens.

 

 

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