Here Comes the Sun…

It’s not unusual at all that a classic Beatles song would show up on a classic rock station in the car.  And I could write it off as mere coincidence.  But, there was my Dad this afternoon.  In the car, with the sun shining.  Reminding me…

“Here Comes The Sun”

Here comes the sun, here comes the sun
And I say it’s all rightLittle darling, it’s been a long cold lonely winter
Little darling, it feels like years since it’s been here

Here comes the sun, here comes the sun
And I say it’s all right

Little darling, the smiles returning to the faces
Little darling, it seems like years since it’s been here

Here comes the sun, here comes the sun
And I say it’s all right

Sun, sun, sun, here it comes
Sun, sun, sun, here it comes
Sun, sun, sun, here it comes
Sun, sun, sun, here it comes
Sun, sun, sun, here it comes

Little darling, I feel that ice is slowly melting
Little darling, it seems like years since it’s been clear

Here comes the sun, here comes the sun
And I say it’s all right
Here comes the sun, here comes the sun
It’s all right, it’s all right

Dad never worried much.  And that had its down sides – I’m not going to lie.  But there was this calm about him that I was able to appreciate more as an adult.  I would call him all spun around, and somehow without belittling what I was worried about, he was able to help me take a few deep breaths.

Our problems here are real.  They are ever-present.  They can captivate, and get a downright choke-hold if we let them.  The worries are real.  The concerns about the future.  About mobility.  The concerns about the present.  About pain.  About fatigue.  About swelling.  And looming surgery.  The long-term effects of an AVM that seems to be affecting foot size, knocking a growing girl off-sides.  The concerns about the uncertain make it hard sometimes for me to find the sun.

There are normal “issues” too.  Ones we don’t write too much about here.  Bumps in the preteen world.  Learning as we go.  Along together.  Grateful for what, and who, we have to work with in this house.

Yesterday it was dark.  Really, really dark.  My gut drew me to the cemetery, where I hadn’t been for a while due to the snow.  And as I walked up the hill I saw the white piece of granite.  I think I knew it was going to be there.  And simultaneously I was glad and sad I was alone.  I cried like I haven’t cried in quite some time.  There is something about the reality of loss etched in stone.  The permanence strikes in a whole new way – and its like being kicked in the teeth all over again.

There's a certain finality of reality etched in stone...
There’s a certain finality of reality etched in stone…

I sat in the car too shaken to drive.  And I called my husband, and then I called Alan.  Alan is one of Dad’s Marines who has stepped into my life in such a huge way over the past year.  We have yet to meet, but we have spent hours on the phone.  He has laughed and cried with me.  He has told me stories of things, and people I needed to know.   He sent me a book a few months ago called “90 Minutes in Heaven” and simply wrote, “Read this.”  I haven’t read a book in quite some time, but I did as I was told… and I was so grateful.  My Dad merited a Purple Heart during his service in Vietnam, but technicalities being as they are, it won’t be awarded.  Alan’s efforts on Dad’s behalf over this last year and a half were Herculean.  Marines never leave a brother behind.  So, as I viewed the government issued headstone, without the Purple Heart I had envisioned, and fought for, it stung a little extra.  But just when I was about to crumble these two birds flew in low and close.  There was a peace about them as they flew past into the park.  I understood.  It’s about way more than the awards.  It’s about the love.  And the peace.  And the lessons learned.  And the heart and eyes open for growth.  And “Uncle” Alan made me text him when I got home.  Another testament to his love for his “brother” extending right to me.

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This morning we all made it to church.  It hasn’t been an easy feat these last few months.  We three entered Castleton Hill Moravian, and I was struck by the sense of warm familiarity.  Next Sunday, Easter Sunday, will mark two years of membership for us.  Never did I expect to leave my home church.  Never will I quite get over that loss.  But, I am amazed, impressed, and inspired by the way my husband and daughter have become motivated members of our new church.  Gratitude.  Palm Sunday, a day of ‘Hosanna’ and celebration, foreshadowing the lowest days, leading us to Easter Sunday next week, and the promise of the Resurrection.

hosanna

The winter was too much.  In so many more ways than the relentless weather.  The worry.  The heavy hearts.  I missed Valentine’s Day, and St. Patrick’s Day, and never took the eggs out for Easter.  I didn’t realize how very much I needed the sun- literally and figuratively.

sun

 

Today Meghan swam.  Another CYO meet.  She blew my mind.  Again.  I can not for the life of me get over her stamina in the water.  It’s her “happy place”  and she’s most terrified of her upcoming surgery because of the time she will need to be away from the pool.

Her team loses every meet.  But the friendships they form, and the positive attitude can not be traded for high scores.  She became a swimmer because this team took her in when she had never swam competitively.

The 25 fly… (red cap)

The first leg of the freestyle relay.

We had friends spontaneously show up to cheer her on today.  Perhaps they sensed the lowest lows…  We spoke of summer, and gathering in the yard – just because.

We drove home with the sun warming the car.  The temperature read 50 degrees on the dash-board.

This week we will wait for the results of the blood drawn Saturday.  This week will be just 4 days as Easter Vacation approaches.

“Here comes the sun… and I say It’s all right…”

Dear Cowden’s Syndrome,

I’ve wanted to talk to you ever since you rudely introduced yourself to my family in 2011.  Actually it wasn’t even a proper introduction.  It was more like, “I’m here.  I’m staying.  What are you going to do about it?”  In hindsight, you’ve probably been with me from the very beginning, an explanation for the years spent in surgery for random growths all over my body.  And you know what?  I could have kept quiet about things.  I could have plodded along removing lumps and bumps as they surfaced, praying they remained benign.  But, you crossed a line.  You messed with my girl.

I went all those years not knowing.  I never understood why I seemed to spend an inordinate amount of time in doctor’s offices, generally being made to feel like an idiot for things they could not explain and did not understand.  But, I’m a mother now, and mothers get over those things because nothing is more important to them than the health of their children.

So when my then 8 year-old was introduced to you at an incredibly tender age, the mother beast in me came alive.  Before I could even contend with your existence I had to run damage control and get out in front of the storms you were plotting and planning.  I had to read and research and learn, because with an occurrence rate of 1 in 200,000, I typically knew more than any doctor we met.  And with our PTEN (tumor suppressor) gene officially listed as broken, the words cancer, cancer risk, and potential malignancy became part of our every day vocabulary.

That entire first year I was sure we had lost our very existence to the routine screenings you require.  A doctor for every body part, and a pediatric and an adult version of each no less.  Scheduling was a nightmare.  It’s a wonder I kept my job and my sanity.  And my girl, almost like a deer in headlights, tired of being poked and prodded and treated like a pincushion was getting plenty annoyed.  She’d already had 8 surgeries, and a ridiculous number of biopsies and MRIs before we met you.  Now there was this road ahead that was just flat out exhausting.  There were worries heaped upon worries.  And it got old real fast.

Our friends have tried to hang with us.  And they are an incredible lot.  But, it gets tiresome to hear that things just keep on coming, and that nothing here is “all better.”  Understandably, many of them have had to pull back.  Their own lives are busy.  Things continue, and just because you want to have your way with us, the world can’t stop spinning.  We miss socializing.  We miss casual get-togethers.  It’s hard enough to even visit properly with our family in between appointments, and hospital stays and the few activities you haven’t taken from my daughter.

Let’s talk about that for a minute.  Let’s talk about the pain.  The unforgiving knee pain that affects every aspect of her life.  Let’s talk about having to quit soccer in 1st grade, and dance 2 years later.  Let’s talk about her desire to run track that can never ever be.  Let’s talk about my girl, born with the heart of an athlete who keeps getting the rules changed on her.

The knee!  The right knee.  The one that has hurt since birth.  The one where the AVM (arteriovenous malformation) was supposed to be resolved in or or two embolizations.  Until they learned of you.  You would be the reason it continues to plague her, change the course of her life, and cause her undue agony on a daily basis.  You would be the reason the 5th attempt to fix it in November after 50ccs of blood leaked into her knee joint essentially failed.  You would be the reason we are awaiting a 6th surgery on the knee.  This one with the orthopedist and the interventional cardiologist at the same time.  One will assess the damage from all this blood, and the other will have another go at this AVM.

The AVM.  The likely reason the feet are now a size and a half apart.  Continuing to make life easy for my girl aren’t you?

And while we’re at it, let’s talk about the thyroid.  The 19 nodules you allowed to grow there, until “precancerous” prompted complete excision.  We beat you.  We got it out in time.  But, it was real close, and I didn’t like it one bit.  And as payback, 13 months later, the synthetic hormones still leave her chronically wiped out, and running on raw nerve.  The endocrinologist is confused.  He offers no explanation as to why it’s not ok.  They offer me no answers about the effects on the body.  Because they don’t know.  You’ve kept them confused, and it’s wearing on my nerves.

But, you know what?  You won’t win.  Not here.  Not in this house.  Not with my daughter and I fighting you every step of the way.  We like to call ourselves “Beatingcowdens,” because we are.  And we will continue to.

See, you messed with the wrong women here.

After we dusted ourselves off and learned to schedule the screenings and tests and surgeries on OUR time, we started to breathe a little.  There are so many.  But, they don’t OWN us.  Plus, I went on ahead of you and got some things removed.  That “prophylactic mastectomy” that turned into “thank goodness she got that DCIS we didn’t know was there out in time…”  well, that was a HUGE win.  And the hysterectomy before the uterine polyp could change its mind from benign to malignant.  Winning.

My daughter has decided to become an advocate for rare diseases.  Her work has begun small, out of a need to educate the people who judged her for sometimes needing a wheelchair to contend with that knee.  It started with some business cards that explain what Cowden’s Syndrome is.  It blossomed into assemblies at school, newspaper articles, and a friendship with our Borough President.

She took to the Global Genes Project, and their logo, “Hope, It’s in our genes.”  She had a friend make a denim ribbon necklace.  And “identity piece” for her.  She learned about all the rare diseases she could, and how so many of the babies who can’t speak for themselves need our help.

She embraced the creation of the PTEN Hamartoma Tumor Syndrome foundation in 2013.  She carries hope that one day their work will affect change directly in our lives.

She met up with friends through my online connections.  She corresponds with Colorado and Australia.

In February, with only guidance from me, she organized a “Jeans for Rare Genes” fundraising breakfast that generated $12,200 for her two favorite charities.  Over 150 people attended that event.  Community support was overwhelming.

Oh, and the heart of an athlete you tried to take from her… you lost there too.  She is a swimmer now.  And this year she qualified for Silver Championships in the 100 butterfly for her age group.

So, despite what you may have tried to do to our lives, you are losing terribly.  You are something we will have to deal with for the rest of our lives, but you will NEVER own us.  You may try to be pushy. You may be downright rude, hurtful and insensitive at times.  But, that’s OK.  We’ve handled worse than you, and we’ve come out just fine.

As a matter of fact, maybe I should say thank you.  Thank you for lighting the fire in our bellies.  Thank you for helping us find our self-confidence.  Thank you for giving us the fight that forces us to never ever give up.  Thank you for teaching us that we can make a difference.  Thank you for empowering my beautiful young lady with a forceful strength that WILL change the world.

You’re not the boss of us.

Forever we remain,

BEATINGCOWDENS!

Lori & Meghan

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RFTC 2013B

“Cancerversary- a celebration of life BEYOND cancer”

To some people the idea of celebrating a “cancerversary,” or the anniversary of the day you became a “survivor,” is silly.  But, to someone who is date obsessed, it makes sense to celebrate the victory.  It’s not about remembering the bad.  It’s all about celebrating the good.  The reality of the here and now.

This morning my daughter handed me this letter – typed from her computer by her own hand.  I am sharing it – as it was written – with her permission.

Dear Mom,

 

I love you with to infinity and back. You are the best mom I could ever ask for and I am so glad that you found the breast cancer early. I could never imagine a life without you. You have always stood by my side, and protected me. Even when I say, or do some stuff, I hope you know that that does not change what I feel towards you. Love. Compassion.  You have been my guardian angel in small ways and big. You make sure my shoes don’t get eaten!, you hold me tight and talk me through tough nights, and you are always there for me when I am in pain. When I am in the hospital you are there when I can’t walk, when I cry out in pain, and when too many thoughts come rushing into my head. You have this unique ability to just make people smile, and you are the most pure-hearted person I know. You do for others, even though often you never get a thank you, or some king of acknowledgment. You are kind to a fault. Mom, you have made such a big impact on my life, I would not be me without you. You know what, if I kept going on, it’d be the year 3001! Anyway, back to the point. I love you more than you could know, and I am so grateful to have you as my mom.

 

I love you mom,

                        my guardian angel

 

Meghan

 

Really?  What more could I want?  Except for a LOT more “cancerversaries” to watch her grow up and change the world…

daughter

Three Year Old Memories

It was about 4 in the morning on March 5, 2012.  I was laying on the bathroom floor, vomiting the contents of my “nothing to eat or drink after midnight” stomach.  I was dizzy, lightheaded and weak.  The task looming ahead that morning was unlike any I had ever been through.

As I lay there, trying to gather every ounce of strength in my body, I thought about the whirlwind that had been the last 6 months.  Just barely 6 months prior my daughter, and then I, had been diagnosed with Cowden’s Syndrome.  I had read and researched and didn’t like much of what I saw.  I digested elevated cancer risks in just about every body part – some of them astronomical – as I tried to triage the onslaaught of new specialists taking over our lives.

Cowden’s Syndrome was an explanation.  It wasn’t something we had just “caught.”  She was born with it, and its likely that I, a “spontaneous mutant” was born with that “frameshift mutation” on my PTEN gene as well.  But now that it had a name, and a definition, now that there was knowledge, there was also responsibility.

We had Meghan to the endocrinologist almost immediately and 4 nodules were discovered on her thyroid.  Emotionally scarring biopsy followed.  We met an oncologist for intake as well.  And I, I was set to deal with all those “peak at 40” risks that were now presenting like a time bomb in my own body.

I sat up when Felix came into the bathroom.  I don’t remember much of our conversation.  Somehow I got myself up and dressed and into the car.

We drove to NYU in a good deal of silence.  I am sure I cried a lot.  I shook quite a bit too.  But it was time.  The decision had been made.

Soon after diagnosis I was sent to a breast surgeon to address the 85%+ risk of breast cancer in Cowden’s Syndrome patients.  I forwarded her my medical records before the appointment.  At the age of 38 I had racked up 7 breast biopsies and had a mother who was a bilateral breast cancer survivor 15 years earlier.  We barely had said our “hellos” when she told me, “It’s time to schedule a bilateral mastectomy.”  I wasn’t stunned I admit, because I knew it was a possibility, but the matter-of-fact certainty with which she spoke was a bit unnerving.

not if but when

“You will get cancer,” she told me.  “It’s not a matter of IF, but WHEN.”

I asked if it could wait till July.  She said absolutely not.  March 5th was as late as I could push her.

She ordered an MRI in February “just to be sure” everything was ok.  The MRI was clean.

Just a normal “prophylactic bilateral mastectomy.”  If there is such a thing as “normal…”

I met with the plastic surgeon, arranged for the implants.  I blatantly refused tissue expanders, much to her chagrin.

My mom, during the time of her surgery had once called her breasts “superfluous tissue.”  I tried to keep that in mind when I was making mind- numbing decisions.

We got checked in at the hospital before 7 AM.  There was a whirlwind of doctors and nurses traveling through.  Some had me signing consent, others were checking various things.  I wanted to run, and scream.  I felt like I was stuck in a bad horror film.  But, I sat.  And I signed papers.  And I waited.

And then it was time.

It was a long walk to the operating room after I kissed my husband.  I couldn’t much control the tears.  I was terrified.  The last thing I remember preoperatively was my surgeon looking me right in the eye and telling me, “You’re doing the right thing.  You’re doing the brave thing.  There is NO other choice for you.”

I woke up hours later in recovery, and after first verifying that the anti-nausea meds had worked, and I had no urge to vomit, I checked out the bandages covering my chest and I felt…  sweet relief!

third-birthday-cake

Even now, as I think back three years later, I am certain that was my first, and most genuine emotion.  I felt relieved.  I felt empowered.  I felt victorious.  This was one battle Cowden’s was not going to win.  We played on my rules and my time… ok, well the doctor’s time… but still!  I knew of too many lives lost to breast cancer, and I would not be one of them.  One less worry.  More time to be the Mom and help my girl through this genetic mess.

every-test-in-our-life-makes-us-bitter-or-better-every-problem-comes-to-break-us-or-make-us-the-choice-is-ours-whether-we-become-victim-or-victor

I left the hospital about 28 hours after I got there.  The drains were the worst of it all.  There was pain, no doubt, but it was all tempered by the peace in my soul.  Mom stayed by my side for days, and we had some of our best conversations as I sat in the glider I had used to rock my baby Meghan to sleep 8 years prior.

Pathology was almost an afterthought for me.

That was why I was taken by such surprise when, 8 days later, the surgeon removing the drains said, “you made the right call.”

pink ribbon

At first I was confused.  I thought maybe she was just advocating my decision.  Then she showed me the multiple page pathology that cited 1cm of DCIS (Ductal Carcinoma in Situ) a “self-contained” malignancy.  There were all sorts of other markers too.  Cellular changes to indicate things were starting to go very wrong.  Because the DCIS was so far from the chest wall, I would need no treatment at all.  An hour before I didn’t even imagine I had HAD cancer.  Now, I was being declared cancer free.

“If you had waited for July to get this done, you would have likely been in a fight for your life.”  I will probably never forget that sentence.

piglet_gratitude_winnie_the_pooh

I stepped onto the street in NYC with my husband and my daughter.  We all took a moment to digest what had gone on.  We hugged.  Then I grabbed hold of Meghan.

“You my dear, saved your mother’s life.”

Confused, “How do you figure?”

“If it wasn’t for you Meghan and your diagnosis, no one ever would have pushed me into this surgery.  I would have found the cancer much later.  Possibly too late.  I am going to be Ok BECAUSE of you…”

As we let the gravity of that sink in, it was the ultimate lesson in perspective.

The steps that put us in line to have her, and ultimately me, diagnosed were life altering in so many ways.

Every piece of our past is a bit of the puzzle we are forming with our lives.  Some of the pieces are confusing, and don’t seem to fit.  But, sometimes we just have to wait patiently and watch.

broken pieces into masterpieces

Three year old memories.

Gratitude.

Day One

Matthew West

from the album Day One (Single)

Buy on Amazon | iTunes

Play sample

Well, I wish I had a short term memory
Wish the only thing my eyes could see
Was the future burning bright right in front of me
But I can’t stop looking back

Yeah, I wish I was a perfect picture of
Somebody who’s never not good enough
I try to measure up but I mess it up
And I wish I wasn’t like that

I wish I wasn’t wishing anymore
Wish I could remember that nobody’s keeping score
I’m tired of throwing pennies in a well
I gotta do something
Here goes nothin’

It’s day one of the rest of my life
It’s day one of the best of my life
I’m marching on to the beat of a brand new drum
Yeah, here I come
The future has begun
Day one

Well, every single day Your grace reminds me
That my best days are not behind me
Wherever my yesterday may find me
Well, I don’t have to stay there

See my hourglass is upside down
My someday soon is here and now
The clock is tickin’
And I’m so sick and tired of missing out

It’s day one
And here comes the sun

Every morning, every morning
Every morning, mercy’s new
Every morning, every morning
Every morning, I will fix my eyes on You
Every morning, every morning
Every morning, mercy’s new
Every morning, every morning
Sun’s coming up, the beginning has begun

Starting over, I’m starting over
Starting over, I’m starting over, starting now
I’m starting over
Starting over, I’m starting over
Starting over
Starting over, starting now
I’m starting over

The Heart of a Champion – an open letter to my daughter

Dear Meghan,

Today Daddy and I watched you swim in the Silver Championship meet.  It was your first qualifying meet, and it won’t be your last.  We find it amazing that you qualified, and for the 100 butterfly no less, in only your second year of swimming.  To say we are proud would not even begin to define how we feel.

Today was just another example of how you amaze us, astound us and impress us.  I know, parents are supposed to be proud of their kids.  I get it. But, when I think of what you go through each moment of every day, I truly am left in awe.

I get that you like swimming because you can feel “normal.”  There is no special treatment in the pool and the clock forgives nothing.  Cut times are clear and either you make it or you don’t.  Believe me, I don’t look to make excuses for anything or anyone.  You know that I can be kind of tough.  (I get that from Grandma, along with a bark that’s worse than my bite… :-))  But sometimes in those moments when you are your toughest critic you have to allow yourself the same forgiveness your warm heart offers to others without hesitation.

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Living with Cowden’s Syndrome is a tenuous balancing act.  To stay on top of things the way you do takes intense effort.  I think most people would be physically and emotionally exhausted to live your yesterday – let alone your every day.

Last night when your back gave out, and the pain was too intense for me to even touch you, I gave you every out.  I gave you every excuse not to swim today.  You wouldn’t hear of it.  Your hips, the exact point you need your force to kick for your favorite butterfly were tender to even the gentlest touch.  It took you hours to rest because your body allows nothing to contend with the pain.  So I held your hand as you wiggled and squirmed for hours.  I reminded you I loved you as you desperately tried to rest.  I stroked your head when you finally passed out from exhaustion.  And I was glad the lights were off to hide the tears that stained my face.  Tears, not of pity, but of grueling agony of watching my dearest love suffer some more.  I knew as I laid there it was unfair.  That your knee was still hurting too, and now your back.  I knew I made no sense for all this to be coming the night before something you wanted so badly.

A-champion-is-someone

 

That defines your life.  Sometimes the hits are small and consistent.  Sometimes they come out of nowhere, but you just keep going.  You just keep fighting.  And truth be told, you inspire me to so the same.

Yesterday we went to look at shoes.  You’ve been complaining for months that your left sock is tight.  The orthopedist measured your feet and acknowledged the 1cm difference between them.  But, I don’t think either of us took in the reality until we were in the shoe store and saw this.

Left Foot
Left Foot
Right foot (AVM leg)
Right foot (AVM leg)

Another realization that we needed to go about things a different way.  So we picked out your shoes, ASICS GT 2000 3 in a 9.5 and a 10.5 and we spoke to the store manager at Dick’s.  He will help us.  Because we asked.  But, I know it got into your head.  The wonder about the upcoming surgery in May and the worry about what this AVM is doing to your knee in its spare time.  And I HATE not having any answers for you.  But I don’t.  I can only promise to be with you every single step of the way.

And as I got your pills out yesterday morning, and I helped open your thyroid pills, I thought about the year since you had a complete thyroidectomy.  It was just over a year ago you became a thyroid cancer “previvor”  when your 19 nodules, including three precancerous ones, came out with your thyroid.  It occurred to me for about the 5,000th time this year, that your thyroid is STILL not balanced.  We don’t give up.  We keep trying.  But its you who has to wake up every day and function  ok soar, with levels that would leave people 2 and 3 times your age crying in their beds.

So when you took the block today, I took a moment to take it all in.  I took a moment to take a good look at you, and I swear I could see the heart of a champion beating in your chest.  I saw your green and black suit, and your prescription goggles, but in that moment I saw your raw heart.  I saw the feisty determination that gets you through each day.

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You might not have seen your best time on the board.  But, me, I saw a champion.

The free dictionary defines a champion as:

cham·pi·on

 (chăm′pē-ən)

n.

1. One that wins first place or first prize in a competition.
2. One that is clearly superior or has the attributes of a winner: a champion at teaching.
3. An ardent defender or supporter of a cause or another person: a champion of the homeless. (or those with rare diseases – Ok I added that)
4. One who fights; a warrior.
And while you may not get a first place medal, you have won by walking through the door.  You have overcome greater odds than anyone ever really knows.
You take the high road, even when it’s the tougher one to walk.  You put other people first.  You advocate for those less fortunate.  You stand strong for what you believe.  You excel in school.  You soar at your extra curricular activities, and even within the pain that is relentless, you are an athlete too.  You my girl, are a warrior, a true champion.  Because as you get older you will come to realize that success is not defined by the highest grades, or the most first place ribbons.  Success is defined by your character, by the person you are.
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So my girl, when you lay your head on the pillow, know that I admire you with every aspect of my soul.  Know that I respect that you daily work to be the best YOU, you can be.  Know that YOUR BEST is ALWAYS good enough.  Know that your compassion changes people.  Know that you, in your own way are making an impact in this world.  And most of all, know that you have two parents who love you more than you can possibly understand.
Thank you.  For being more than I could have ever hoped for in a daughter.  For even though we will hit rocky roads sometimes, we have seen so much, side by side and hand in hand.  You my girl, have the heart of a champion, and there is no one I’d rather travel this bumpy road with than you.
All my love always,
Mom
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