“She’s so unusual…” and Other Ironies

This is quite a garble of thoughts… good luck!

** This blog was written over 2 days.  The BLUE type was written today, Sunday July 19th, and the BLACK type is from Saturday, July 18th.**

I’ve been asked by people who read this blog, several lately, “How do you stay so UP, all the time?”  Sometimes I find that question to be the biggest irony.  I struggle often, and deeply.  The whole purpose of this blog is a candid description of our journey with this beast called “Cowden’s Syndrome.” Let none of you ever imagine for a minute that we are “UP” all the time, cause it’s just not true.

But, as difficult of a road as this is, I have tried always to remain acutely aware of the connections we have to others, and the never-ending reality that “everyone has something.”

everyone you meet

So often my writing is where I work it out.  I type.  I think.  I read and reread.  And, cheaper than a therapy session, I am able to tease away the negativity and find the focus I need.  And when I am unsure, and it just doesn’t sound right.  I wait.  Just like I advise people to think before they speak, “Is it true? Is it kind?  Is it necessary?”  I try to think before I publish.  So last night I sat wrestling with this.  And I never hit publish.

From “Corner of the Sky,” Pippin soundtrack

Everything has its season
Everything has its time
Show me a reason and I’ll soon show you a rhyme
Cats fit on the windowsill
Children fit in the snow
So why do I feel I don’t fit in anywhere I go?

So again we hear, “That’s really unusual.”  “I’ve never seen that before.”  “Typically…”  And I chuckle, in frustration and in the irony of it all.

This time it was at the dentist.  Meghan felt something in the back of her mouth.  An X-ray revealed an impacted wisdom tooth.  She’ll be 12 next month.  The consult with the oral surgeon is on the 29th, two days after she meets with the hand surgeon (again) to discuss the vascular lesion on her palm.  Her abdominal sonogram to screen for Cowden’s related issues is on July 31st.

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This week someone will call me with the name of a foot and ankle surgeon, suggested by the orthopedist who did her knee surgery based on her foot pain and size discrepancy.  Who really knows where that will lead?

I’ve got a bone density test set for Monday, to determine if 30 years of thyroid medication, and early menopause forced on by a hysterectomy at 38, has depleted my bone density.  My next phone call needs to be to the vascular surgeon.  He had some success with the right leg in February.  The left leg is in dire need now.  That is as soon as I can settle the errors on the anesthesia bill.

The number for the “Skin Cancer Screening Clinic” at NYU sits on my desk.  Meghan and I both need to be scheduled.

I just finished completing the papers for her medication for the 2015-2016 school year.  They are copied, one is filed, and one is set to be mailed Monday.

We’ve started to discuss, the two of us, dates for the 2016 “Jeans for Rare Genes” fundraiser.  We’ve got some neat ideas.  It passes the time.

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For the second year in a row, Meghan was nominated for the Global Genes Project “Teen Advocacy Award,”  and although she did not win, it is an incredible honor to be making a noticeable difference at such a young age.  One day we will take her to California for the Global Genes Advocacy Summit.  One day her vision of a denim ribbon necklace will come to fruition.  One day.  But not this year.  Because this year I am trying to schedule vascular surgery that weekend.  Because we have to prioritize.  Right?

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I have set some fitness goals this summer.  I am setting a 10,000 step a day minimum.  I am aiming for at least 5 miles a day.  My dog is in the cross-fire of this goal.  She is my walking partner.  Because she likes to walk – but maybe not quite that far- and she can’t really say no.

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I am always struck by the ironies in life.  I am stronger than I have been in years.  In many ways I am healthier.  I have found Isagenix, and I feel better.  Stronger.  More resilient. More able to cope with life’s obstacles.

Which is good.  Because life has a tendency to be really isolating.

I suppose we all feel that way sometimes.  And many of us feel that way most of the time.  But, sometimes that is little consolation.

I am grateful not to fit in with the Moms of really sick kids.  I don’t envy them at all.

But, I can’t find a spot with the Moms of mostly healthy kids either.  Unless I don’t talk much.

Cause talking about a “healthy sick kid” is confusing, and frankly more than most people can, or choose to process.

I want to spend time with people my own age.  I have lots and lots of people I like, but not too many friends to get together with.  Sometimes I wonder what it would be like to just get together.  And chat.  Maybe over lunch, or dinner, or drinks.  Or maybe have a barbecue, or even a night with other couples.  Where everyone socializes.  And no one is overly worried about anything.  But we end up declining the few invitation we get because something always seems to be in the way.

This life is isolating.  The constant doctor’s appointments, surgeries, food allergies, medical bills, prescription drug battles, mobility restrictions, have made us difficult to “hang out” with.  And I get it.  And it doesn’t make me mad.  Because it is what it needs to be right now.  And there are friends I talk to and text with.

Do not misinterpret this as a need or a desire for pity, or sympathy, because it couldn’t be farther from that.  What I write here is a simple representation of facts that are.  They just are.  And maybe one day they won’t be.  But, I have already learned not to wish life away, not even the uncomfortable parts.

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But on nights like tonight, when two decks on my block are lit up with social gatherings, I find that I long for summer days of freedom.  I crave careless, schedule free days.  I dream of getting up one morning, and hopping in the car with Meghan and just going somewhere far away from doctors and hospitals.

Just like the curly haired people who wonder about straight hair, I wonder. But, even as I wonder, in my heart I know this journey is taking us somewhere.  Somewhere with an end I can not see.  There are stops along the way to make us stronger, wiser, and more patient.  There are lessons on empathy and compassion to be learned.  There are experiences that will turn us into the people we were meant to be.  The road is long and winding.  Sometimes the climb is tough.  But, but the view, when you really stop and look, is amazing…

Rivers belong where they can ramble
Eagles belong where they can fly
I’ve got to be where my spirit can run free
Got to find my corner of the sky…

I ended last night feeling lonely, and lost.  The song from Pippin had been in my head all day, resurrected from memories of ages ago.  Yet, I couldn’t shake it.  Where do I go?

This morning Meghan was well.  She woke up well, and early enough to make a two-hour morning swim practice, which she completed.  I had time to walk a few miles near the pool.  The sun was beautiful, and the air wasn’t quite that warm yet.  There were birds singing happily, and flowers to appreciate.

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After swim we made it to church.  It had been a few weeks since we were able to get ourselves there.

And in the bulletin I was met with a quote,

“I know I cannot enter all you feel

nor bear with you the burden of your pain

I can but offer what my love does give – 

The strength of caring, the warmth of one who seeks to understand.

This I do in quiet ways – that on your lonely path you may not walk alone.” – Howard Thurman

There was a basket of rocks where we were instructed to take one to represent us.  The rocks were placed in a bowl, and water would surround those rocks symbolizing the love of Christ.  Stories were told, personal and biblical, about love and caring for the physically, and emotionally wounded.  

We were invited to choose other rocks, to represent people we loved, who had needs weighing heavy on our hearts.  As I chose mine my eyes were full of tears.  Not of sadness for those people, but of the promise that they are also enveloped in the love of God.  My hand was full, I must admit, and I took a few moments to say a prayer over each rock as I placed it in the water.  And then, tears of pride, as I saw my daughter had selected her own “rocks” to pray over.

The closing hymn (words and music by Marty Haugen, 1987) began like this;

“Healer of our every ill, light of each tomorrow, give us peace beyond our fear and hope beyond our sorrow… You who know our fears and sadness, grace us with your peace and gladness, spirit of all comfort fill our hearts…”

And the idea that we are here to “Bear one another’s burdens,” permeated my heart.

Bear-Ye

I am not “UP” by my doing at all.  I treat my body well.  I treat my mind well.  And I allow my soul to be cared for.

My peace comes from the knowledge, the belief, the conviction that we are guided by a loving God.  That all things are not mine to know, and that through His grace alone we have the strength to remain,

“BEATINGCOWDENS!”

Appreciating the Rainbow AND the Storm

Let’s be real.  Plain.  Honest.  Real.

Sometimes we all want to throw our hands up.  Sometimes we want to quit.  Sometimes we want to hide in the closet or under the table alone.  For a long time.  Because EVERYONE HAS SOMETHING….

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No one’s life is easy.  The trick for me is realizing that and moving on.

Yep, some days I throw a fit right here in my house.  Some days I am sad and overwhelmed.  Some days I even cry, like here (http://wp.me/p2qi4v-10g)

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But, the rule is about 15 minutes.  I am allowed to have a pity party for about 15 minutes.  (Sometimes that 15 minutes happens again, and again – but not usually.)  Because then, I have to put on my big girl panties and make it work.

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We play a lot of games of perspective here.  We work on looking at things another way.  “Flipping it…”  so to speak, to try to get through.

The end of school is a crazy time for us.  It’s supposed to be a time to rest, and unwind.  But, really,  it’s just shifting gears. Most of our doctors keep us on a “Six month leash,” so we do our best to schedule one round the very beginning of July.  This way if anyone needs anything else there is time before school starts again.  The other cycle is distributed around February vacation and school holidays.  The only problem with this is it grossly limits the number of ACTUAL holidays there are in our lives.  There is a good deal of “Go, go, go…”

perspective

Despite our occasional “preteen issues”  my daughter is insanely easy to please.  She wants to swim.  She wants to act.  She wants to read.  She wants to watch tv.  She wants to socialize with children  preteens who are nice to be around.  She wants to eat good, safe food, (cooked by her father not me!)

What she’d prefer not to do is sit.  In the car.  On the BQE.  On the LIE.  In the waiting room.  In the exam room.  Over, and over and over.  Yet, still she handles it gracefully.  She packs her own bag with a variety of things to occupy her time, and some snacks too.  She really does not complain. (Except maybe if there’s a needle…)

What I try to do is spare her some appointments any chance I get.  So when mine come up I try to leave her behind, and that’s what I did yesterday and today.

See, between us, there will be 15 appointments in two weeks, ending this Thursday.

This morning I made my 3rd trip to Manhattan in the last 7 days, but yesterday and today I drove alone.  Meghan was tucked away at camp.  Happy as could be.

I sat in the car, alone.  The 20 or so miles never take less than an hour, so the luxury of satellite radio, and my green tea, (plus and e+Shot when I need it) are all mine to savor as we inch along.

Gratitude-Appreciate-The-Rainbow-The-Storm

I noticed today I was very calm.  This life, this Cowden’s Syndrome life, is overwhelming, monotonous, and sometimes very stressful.  But, it’s our life. Not glad by any means, but grateful that this load has been bearable thus far.

Some of our doctors could stand to be replaced, but many are stellar.

We are looked at so carefully all the time, that the chances of us missing something important have drastically decreased.

We have real life conversations, about real life problems, and we handle them with A LOT of humor.

We have a home that is full of love, and a witty, intelligent, young lady growing here.

We have two steady jobs.

We are able to vacation, and enjoy a few extras along the way.

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We have become adept at navigating the bumpy road as a unit, not just Meghan and I, but her Dad as well.  We are a team of three.

We have found nutritional products that keep us energized and strong as we brave the storms.

We are often dubbed the “healthiest looking sick people.”  A comment that always makes me smile.

Some people like to use the word “blessed.”  I have some trouble with that.  If you are the person amidst terrible tragedy, are you then to feel you are not “blessed?” I may have a few questions for God, but the God I believe in doesn’t work that way.

Problems

Grateful – feeling or showing an appreciation of kindness; thankful

Now I do believe that there is always room for gratitude.  There is ALWAYS something to be thankful for.  For us, there is OFTEN a LOT to be thankful for.

Gratitude is not about always being happy, and life always being perfect.

“Gratitude consists of being more aware of what you have, than what you don’t” – Unknown

Even as we journey daily BEATINGCOWDENS, I am striving for an “attitude of gratitude,”  for myself and my own sanity, but also for my daughter, who watches and learns from breath I take.

Autumn-Rainbow-Gratitude

Mortality

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The awareness that one day we’re not going to walk this earth anymore.

Not exactly dinner conversation, but, for lack of a more gentle way to say it, mortality is everyone’s reality.

We face this reality at different points in our lives.  Some are frighteningly young, and others are blissfully old.  But, eventually, that awareness either creeps in or hits us like a speeding train.  (Figuratively, or course.)

In my opinion, so much of the rest of your life is defined by what you do with that realization, that understanding that there is no promise of tomorrow on this earth.

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For me, my solace, my comfort, and my focus, come from my faith.  My deeply held belief in God, and that life does not end, merely changes, as we are welcomed into Heaven.

Whatever your own belief, is, your own reality, my hope is that it brings you comfort, solace, and gives your life on this earth purpose.

As a daughter of a cancer survivor (18 years and counting!!) I watched my Mom grapple with her own mortality at an age I consider very young.  (young for her, and for me too!) She got it.  She found clarity, but it was a few tough months.  And even then as close as I was, I knew the significance of what I was watching, but I did not get it, not really.

I like to say my breast cancer was found, “by accident” or “divine intervention,” whichever you prefer.  But, the moment in the surgeon’s office, that day in March of 2012 when I became a “survivor” by default, started my own journey with mortality.  I was 10 years younger than Mom was at the time of her diagnosis.  I had just undergone what I had prepared in my mind to be a “prophylactic” mastectomy to battle astronomical cancer statistics associated with the new diagnosis of a PTEN Mutation called Cowden’s Syndrome, that Meghan and I had received less than 6 months prior.  When the word malignant was read, there it was; laying thick in the air for my husband and 8-year-old child to process with me.

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And there was reality.  Unable to ignore.  Cancer had lived within me.  Could it live again?  Would it?  When?  Why was I going to be OK when so many others were not?  Was I going to really be OK?  What if they missed it, something bigger?

I was fortunate.  Fortunate in the sense that a double mastectomy removed the encapsulated stage 1 cancer.  I needed no treatment, no medication.  But, my status had changed.  In the eyes of the doctors, I was now an even greater risk.  Every single lump and bump would be scrutinized, scanned, poked, prodded, and usually removed.  The loss of my uterus and ovaries weeks later were a testament to this new-found realization that I was a risk.  A significant risk.

Cowden’s Syndrome is one of those diagnoses that forces you to face down your own mortality at sometimes alarmingly young ages.  An internet friend just made a jubilant post today that her youngest was now 10 and cancer free, a title she did not have herself at that tender age.  The things we celebrate…

My Cowden’s Syndrome people are known to me mostly through the internet.  We live across the country and across the globe.  We navigate through different time zones and support each other through scans, scares, surgeries, reconstructions, and cancer.  While this syndrome does not manifest itself the same in each of us, there are alarming similarities that make us kindred spirits.  There is that “Sword of Damocles” hanging above our heads.  There is that constant sense of not knowing, of hyper-vigilance, of bi-annual screenings, and worry.  We stare at our own mortality each time we look in the mirror.

We have an extra bond when it connects to our children.  A universal acceptance of the unfair nature of these young ones even needing to understand a bit of mortality.  We have juggled the questions, inevitable after MRIs, CT scans, and biopsies galore.  We have gently answered questions about family, and future, that have no real answers to date.  We ache for them.  We wish to take it all away.  We have some guilt in the knowledge that in most cases this disorder, (whether we knew it or not) was passed from us.

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Mortality will bind you, and if you’re not careful it can blind you.  That is why there are support groups, for cancer patients, and others who have come close to losing their lives.

This weekend I spent some time in West Virginia with another group of men, bonded by their grapplings with their own mortality some 48 ish years ago in the Vietnam War.

I will protect their privacy here, and tell their story as generically as I can.

I connected with Alan, about 6 weeks after my father died.  Dad had earned a Purple Heart in my mind, for an incident that occurred while he was serving in the United States Marine Corps.  The award was never granted, and I wanted to pursue it on his behalf.  So, I sent some letters to Marines, whose contact information I obtained from a reunion Dad attended in DC in 2006.  I wanted to know who remembered him, and his story.

Alan contacted me first, verified my information, remembered the story, and has been in touch with me since.

My Dad, the "Irish Marine"
My Dad, the “Irish Marine”

 

 

I sent 20 letters out.  EVERY SINGLE MARINE responded to me.  EVERY ONE.  Whether they knew Dad or not, whether they could help or not, they ALL reached out to express their condolences.  Many shared some funny anecdotes.  And as hard as I’m sure it was, they all connected with me.

I had heard about the Brotherhood of the Marine Corps.  I could not have fathomed the depth of that bond.  One after another, they all left me with the same heartfelt sentiment.  “You are the daughter of our brother.  We will help you always in whatever you need.”

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Now, I knew, or at least I could infer that their lives had not been any type of peaches and cream, on the island of Vietnam, or when they returned.  My Dad battled his own demons for many years before our relationship began to form.  But the offers of these Marines were sincere, and genuine.

Alan proved that to me through regular conversations, and almost heroic efforts to get someone to listen to the story of my Dad’s injuries.  In the end, we lost the battle on a technicality.  Although “The statements provided clearly establish that your father was injured as a direct result of enemy action, the available information fails to establish that your father was treated by a medical officer…Wounds not requiring treatment by a medical officer at the time of injury do not qualify for the Purple Heart Medal.”  The letter was cold.  The case was closed.

We lost the Purple Heart but gained so much more.
We lost the Purple Heart but gained so much more.

I was sad, mad, angry and disappointed.  But I was so grateful for the Marines who wrote letters of support.  I was grieving the fact that my Dad had carried this close to him for so many years, and lived with chronic pain as a result.  I wanted this for him, because he never fought for it himself.

And as things go, it was not to be, but Alan did as he promised and remained in constant contact with me.  He heard my sobs as I glanced at Dad’s headstone for the first time. His were the comforting words that started my healing.

So, this weekend I headed to West Virginia to thank him myself.  I met a group of Vietnam Era Marines, several of whom had served with my father.  I watched them together, in awe an amazement.  I was welcomed into their group with instant acceptance.  And as I sat and watched them laughing together, I noticed the war stories were sparse, and funny when they were told.  Surely a contrast to the realities they had faced as young men years ago.  But, the bond between them was unbreakable.  There indeed was the Brotherhood of the Marines, but there was something else.

Mortality.

They faced it in the most horrendous of ways.  They lived it daily.  They buried their brothers.  They knew their return home was not a guarantee.

And once you’ve faced that kind of life altering lesson in mortality together, you are bonded for life.  As Alan said to me, “If you weren’t there, there are no words to describe it, and if you were, there are no words needed.”

I was among a group of people who had faced their own mortality almost a half century ago.  And they have a bond that can not be explained.  It is amazing.

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And among the most amazing to me was the woman I met.  She was not local either, but she, like I, had traveled for this celebration.  It was not her first time.  She had been around for almost 10 years.  About 10 years ago the woman, who was an infant when her father died a hero in Vietnam, met the men he served with.  She had never met her father, but here were father figures galore ready to embrace her.  And they did.

A bit ago her father’s diary surfaced from his time in Vietnam.  She shared it with me and the last entry written before he died was about the thought that so many of them must have had daily.  His diary ends with, “When will it be me?”

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Once you have looked your own mortality square in the eye, you can not walk away the same person.

But, it is up to you what you do with the rest of your life.

As for me, I choose bonding with people who “get it,” be they old friends or new.

I choose focusing on what we can do, not what we can’t.

I will not choose reckless living, but I will daily live with the knowledge that there is no guarantee of tomorrow on this earth.

Whether facing your mortality is something you endured, something you will live with daily, or something you are yet to face, how it changes you is really up to you.

As for us, in this house, we choose to remain focused on

BEATINGCOWDENS,

WHILE CELEBRATING ALONG THE WAY.

 

“I Am From” – Guest Blogger Meghan

I Am From

by Meghan

I am from Love

I am from mutts barking at night

I am from swims in the backyard pool

I am from hospitals and procedures

I am from suffering

I am from anticipation of how my life will survive

I am from anguish after surgery

I am from crying in the hospital at night

I am from fear of not being strong enough

 take pride in your pain

I am from doctors saying this cannot be

I am from hearing that I am unusual

I am from paralyzing fear of iv’s and needles

I am from being cast out for my pain

I am from fear of not surviving from the pain

 Just-Tired

I am from baby blue walls

I am from a home that cares for me

I am from a room of toys so big it’s like a store

I am from a home with clouds as chairs

I am from a home like a chocolate bakery

I am from the calming smell of Yankee candles

I am from the smell of brand new books

I am from the pool

I am from the thrill of swimming

I am from competition

I am from Wagner Aquatics and CSI

I am from the relief that comes with butterfly

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I am Lori

And Felix

I am from Barbra

And Leon

I am from the Ortegas

And I am from the Thompsons

I am from many beliefs

I am from hurt and hatred

And I am from love and compassion

I am from different weather each day

I am from winter devouring sweet spring

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I am from Christmas trees going up after Thanksgiving

I am from a special Thanksgiving meal the day after

I am from August Disney trips

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 I am from spices

I am from cookies and cake

I am from avocado

I am from Isagenix

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isagenix shake

I am from playing with my first dog Lucky

I am from meeting my second dog, Allie at pet smart

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I am from church at Zion and Castleton Hill

I am from the beliefs that Jesus will rise again

I am from running up to the pulpit with Lucky in tow

I am from Gandhi’s “Be the change you wish to see in the world”

be the change

I am from adventure and fantasy filled books

I am from Rick Riordan and J.K Rowling

I am from action figures and comics

I am from DC universe

I am from Wonder Woman

I am from He-Man

I am from Batman and Superman

I am from the sidekicks

I am from X-Box 360 and video games

I am from mythology

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I am from the LOVE of my family

BEATING COWDENS!

Reflections on Mother’s Day – from a “Rare Disease” perspective

Dates, numbers, anniversaries, addresses, and all sorts of other numbers crowd my brain.  I’ve said this before, and I will say again, it is a blessing and a curse.  It is a good thing to celebrate accomplishments, and the anniversaries of such things.  It is dangerous territory to recall to be caught up in the negative aspects of any day.  By doing so you give it power.  And, if you are not careful you give it power over you.

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It is a dangerous road to walk.  I have done many miles on it.  And my brain does not differentiate the “good” dates and the “bad” ones.  I remember them all.  The problem is, some fill my heart with gratitude and joy, while others seem to provoke anxiety unceasing – warranted or not.

I have never been a fan of “Hallmark” holidays.  Valentine’s Day, even after I found the love of my life, has never held any appeal.  Mother’s Day and Father’s Day don’t do much for me either.  Before you jump on me for not loving my parents, I want to share part of an interesting article I read on the history of Mother’s Day.

From:  Mother’s Day Turns 100: Its Surprisingly Dark History

“For Jarvis it was a day where you’d go home to spend time with your mother and thank her for all that she did,” West Virginia Wesleyan’s Antolini, who wrote “Memorializing Motherhood: Anna Jarvis and the Defense of Her Mother’s Day” as her Ph.D. dissertation, said in a previous interview.

“It wasn’t to celebrate all mothers. It was to celebrate the best mother you’ve ever known—your mother—as a son or a daughter.” That’s why Jarvis stressed the singular “Mother’s Day,” rather than the plural “Mothers’ Day,” Antolini explained.

But Jarvis’s success soon turned to failure, at least in her own eyes.

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Even Anna Jarvis did not intend the holiday as it has become.

I have epic amounts to be grateful for.  And I am.  Every day.  I think that’s why the pressure of having it all jammed into one day confuses me and stresses me out a bit.

In church we were taught, “Honor thy father and thy mother…”  I believe the meaning was every day.

So yesterday I needed to do some soul-searching.  And I think I figured a lot out.

I have a tough as nails mother.  She is the strongest woman I know.  Not a day of my life goes by that I am not grateful to her, and for her.  And I try not to let too many days go by without telling her so.  Life has taught some tough lessons, and sent some reminders about how fleeting it can be.

One of the many lessons I learned from Mom
One of the many lessons I learned from Mom

I have two grandmothers on this earth.  One I had the privilege to grow up with, and even though the recent years have been cruel to her memory, my memories of her, and of her love, penetrate my soul.

I have another grandmother, a gift to me 27 years ago, who inherited me as a teenager and allowed herself to love me.  I am so grateful for that love.

And my grandmother Gen who left for heaven in October, whose smile I can see, and whose laughter I can hear… her memory warms my heart.

I am so very thankful I did not wait to acknowledge them only once a year.

happy life

My girl is recovering from surgery.  On my couch.  In pain.  Feisty.  Looking to move.  Bored.  There would be no grand family celebrations yesterday.  My husband was fixing our deck that is literally falling apart.  A labor of love – and safety.  I stopped in for a quick visit to Mom and one Grandma.

I reflected about Mother’s Day a year ago.  Spent in the pediatric unit at RUMC.  Scared out of my mind.  Not knowing what we were up against.

Then I thought about Mother’s Day 2008.  A few days after the tonsils and adenoids came out.

Or Mother’s Day 2012, as I awaited my hysterectomy, a few weeks after my double mastectomy.

Then I thought about my friends.  The ones who have lost their moms way too early.

And the others, whose hearts yearn to be a mother, or those who ache to have larger families than they do.

My heart aches for those who have lived through the unthinkable, and have lost their own children.

Why so much pressure put on one day?

Wouldn’t it just be easier if we celebrated our Moms every day?  Instead of waiting for one day?

I know I may have an unpopular idea here, but so many unconventional things work for us.

I would never claim our lives to be “harder” or “easier” than anyone else’s.  I’m not that kind of fool.  But I will dare to say that maybe raising a chronically ill child makes it “different.”  Maybe facing life with two rare genetic diseases in the family makes me think of things in a slightly unorthodox way.

yesterday

I stick a note in my 6th grader’s lunch just about every day.  And I will until she tells me to stop.  I will remind her in as many ways as I can, of my love for her every day.

Life is scary.  Our lives are scary.  Wednesday some machines, and a very smart doctor breathed for her, for over 2 hours.  This is not a rare occurrence.  This is something that goes on regularly, for one of us.  But, they told me she was, “stable and strong,” and in those words were the best gift I could ask for.

Mother’s Day is every day.  From mother to child, and child to mother, and aunt to niece and grandparent to grandchild.  Not in the, “buy me lavish gifts or send me to the spa” sense.  But, in the, “I’m really lucky to have you.  Right now.  Today.  and thanks.  For that thing you do.  For that smile.  For that hug.  For calling me.  For calling me out. For driving me to the store.  To school.  To practice.  For driving me insane.  For making a mess.  For sometimes cleaning it up.  For sitting by my hospital bed.  For getting me ginger ale.  For helping me walk.  For making me laugh.  For never giving up on me.  For understanding I won’t be here forever.  For being my cheerleader.  For supporting me.  For listening to me.  For shutting up.  For saying just the right thing. For explaining the math.  For butterfly kisses.”

never lose hope

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Mother’s Day in our house may be low on pomp and circumstance, but it’s high on all things that matter.  Right now we’re nursing a recovery.  And it’s coming along, thank you very much.  We are incredibly proficient at this.

And as Mother’s Day 2015 drew to a close, and as we ate our gluten-free pancakes for dinner together, I was struck with the thought that I would not have it any other way.

survival

All Dogs go to Heaven…

Although there is some debate on that, I stand with Billy Graham.

dogs2

We lost our Allie Girl today.  And just when I thought there couldn’t be anymore sadness, our hearts are broken in half.

Allie found us.  Rather, she found Felix, in August of 2007, when PLUTO Rescue did their events at Petsmart.  It was August 4th, Felix’s birthday, and we stopped in just to grab a bag of food for Lucky.  Meghan and I walked through the aisles enjoying some of the puppies around for adoption.  Ready to leave, I asked, “Where’s Daddy?”  And there he was, knee to knee – eye to eye- with Allie.  “This is the dog I was meant to have,” he told me very matter-of factly.

Just a week or so after they met.
Just a week or so after they met.

I came up with a litany of reasons why a second dog was a bad idea. ( We already had Lucky)

“What if they don’t get along?”  (Solved in 2 seconds flat when they met outside Petsmart.  They were fast friends.)

allie5

“We are having company for Meghan’s birthday next week.”  (They offered to delay the adoption 2 weeks.)

“Our yard may not be big enough.” (We passed the home visit with flying colors.)

allie12

“We don’t have the money right now _” (I was grasping.  The fee was so reasonable. And they offered to postdate the check a month.)

I lost.

Publication1

But I won.

Big time.

Allie joined us on August 12, 2007.  The guesstimate for her age was three.  I suspect that was conservative.  She stepped into our home with none of the puppy nonsense new dogs cause.  She was trained, didn’t bite the furniture, or pee on the rug.  She needed a little tiny training to settle down with her food.  Easily done.  And she really was the perfect dog.

Allie waiting until Felix wakes up
Allie waiting until Felix wakes up

She was Felix’s dog from the get go.  No matter where he went she followed.  She slept on his feet at the TV at night.  She waited for him on the weekends if he slept in.  She sat at his feet when he whistled.  She greeted him at the door.  She knew it was he who had freed her from the cycle of adoption and fosters, and found her her forever home.

Her “tough” side – much like Felix’s, was put into check with the right love.

allie9

allie11

I took a bit longer to catch on.  It took a few baths, and some nail cutting, and adjusting to calls from the groomers that they couldn’t service her.  I had to understand her, her abandonment, and her need to trust again.  Once I “got it,”  we did just fine.

allie10

Mostly I fell in love with Allie because she loved my Meghan.  I can remember nights, and there were so many sleep deprived nights,  that Meghan would wake crying, and if we didn’t hear fast enough, Allie would come and get Felix and I and make sure we took care of her.  She became so protective of Meghan – from “hide and seek” to watching her in the pool, to not resting until Daddy dug her out of the snow bank, Allie knew Felix was her master, and protecting Meghan was her purpose.

allie14

allie3

And how could I not love the dog that loved my two favorites?

Meghan, being without siblings, took to the dogs as her “furry sisters.”  She always used the number 5 to represent her family.

allie6

And when she was sick, or hurt, or recovering, as she so often was, Allie was loyal and attentive always.

Being sick is the pits.  Having Cowden’s Syndrome is horrendous.  Having a dog or two to love you through it – definitely a bright spot.

There were so many nights.  More than can be named.  So many nights of tears and frustration and sadness and anger.  Soothed by the love of a dog.

allie13

We love Lucky.  Very much.  But we always said Allie made Lucky a dog.  Allie turned her in the right direction.  Made her less neurotic and more normal.  They were sisters.  A good pair.

allie8

Cowden’s Syndrome just got a little harder to swallow.

Life just got lonelier.

Allie got sick fast.  Maybe a few weeks of not being quite right.  And a few days of really being laid up.

We took her to the vet Sunday.  It looked bad.  I took her back today.  It was over.  Her belly was full of fluid.  Even without eating – 2 pounds heavier than Sunday.  They didn’t offer to do blood.  Or treat.

allie4

“This is it,” the vet said.

And Meghan and Felix came, and we sat as a family.  And we said goodbye together.  We hugged, and held, and loved and cried.  Then we left.

Our world, and our lives forever changed.  Richer for our experiences, more painful for our losses.  For only those who love deeply, can hurt.

Thank you Allie.

Hopefully Grandpa Tom finds you.  You two always got along.  Cause I firmly believe I’ll see you both again.

dogs

Wrong list…corrected and redirected!

It wasn’t too long ago in conversation with my husband that we started to talk about all the things that have gone on in our lives in the last 2+ years.

The life changing diagnoses of Meghan and I and the correlating surgeries and appointments. just about took control there for a while.

And Felix studied for and ultimately obtained his electrical license through the drama, and extensive, ridiculous hiccups in the process.

It all just blurred in and we never properly celebrated that accomplishment.

Meg changed schools.  Well, twice now.

We changed churches.

And the car accident, and the back trauma.

The rotted bay window, and the pool with the hole in the liner.

The loss of my father after a brief, battle with pancreatic cancer that had life changing ripple effects everywhere.

I actually sat down to write a list at one point.  Maybe I felt, albeit temporarily, the need to justify the un-returned phone calls, the missed dates with friends, the chaos shoved behind closet doors, and the overarching feeling of disorder in my life.  I wanted a way to explain why I felt like I was existing, not living.  Why every weekend was faced with catching up, and why we were missing each other.  I wanted to explain to the world how I was nutritionally healthier and stronger than ever before, and excited about my new products, but I was/am struggling to get out of my own way.

But this year has served up some intense wake up calls and I am trying to give them my full attention.  Because if any reality resonates clear it is the one that there is no guarantee of tomorrow on this earth.

I am not trying to be morbid.  Quite the contrary actually.

It is that very realization that caused me to shred that list I was making.  It’s counterproductive to dwell.  We must press forward anyway.  So why stay stuck in the past?

lion-king-the-past

There is a point in your life where you have to stop.  And look around.  And focus on the blessings around you.  This paradigm shift, while far from perfected, is a work in progress.

We have taken steps to transform the house, even if that stands in the way of clearing off the credit card bills.  Because, we are not extravagant, and never will be, but living in a neat, clean, organized house, when done well, is easier to maintain, and therefore an investment in our time together

We have family.  And lots of it.  At 40 years old, I can boast 3 grandmothers and a grandfather.  I am becoming more aware each day of the depth of the value of those relationships.  In addition to those 4 great -grandparents, Meghan has 4 grandparents of her own.   I am beyond thrilled that Meghan, now 11, has had the opportunity to have created life long memories with all of them.

And sometimes it is within thoughts of those closest to us, that we remember what is the most important.

remember who you are

 

And if I really remember who I am, I have to speak of my grandparents, most especially today Mom’s parents.

Early in my life, when things were jostled around and life was uncertain, they were there.  We lived in the first floor of their 2 family for the most formative years.  They fed us breakfast and met us after school.  They took us to sporting events and school activities while Mom worked 2 jobs.  They were just always THERE.

And Pop was there to fix things, and Grandma to play cards and cook with.

There were summers in Ocean City, New Jersey – the best summers of my life.

There was a whirlwind trip to Disney, and so many more adventures.

veterans day pop and gigi

I remember them as a young child, watching them.  They never separated, even for a few minutes, without a kiss goodbye and an, “I love you.”  This practice, perhaps formed after a lengthy service in WWII, and a full career in the FDNY seemed rooted in their deep understanding that we need to appreciate each other here.  Now.

And when we moved into Mom and Ken’s house there was the summer Pop and Grandpa Al sided the house.

And in my own house the woodwork.  The beautiful labor of love that is each piece of trim, each windowsill, each doorframe.  In his 80s when I bought my house Pop trimmed each piece, and even helped Felix put in the front door.  He shared his craft with my husband, and did so with patience and ease.

So much of the last 40 years of my life revolve around Grandma and Pop.

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Never a task too difficult.  Never say no.  Always giving.  Always sharing.  Always loving.

When I think about my list that I had started to write, and then I think about them, I get a bit embarrassed.

Born in 1919 and 1920 they have seen more changes in their lifetime than any other generation.  They lived through the Great Depression, and participated in World War II.  They spent years apart, in touch by letter, only to marry a few weeks after Pop’s return in December 1945.

They built a family, my Mom and my Uncle, and the family branched out.

Pop worked in the Fire Department, and at Zion.  Grandma took care of everything else so that there was never a thing out of place.

During their life transformations like – no phone to cell phones, and no TV to HD flat screens, and so many more have happened and they persevere.  Pop Emails and surfs the internet, and even carries a cell phone – though it’s rarely on!

Times have changed and things slow down a bit.  But it’s still a huge highlight to stop in for a visit and chat.

And when he can, Felix still picks Pop’s brain for suggestions of things he’s about to try.

All my life I remember them doing.  For everyone.  All the time.  They are the ultimate lesson in “pay it forward.”  They are for me the ultimate reminder of those vows we make before God and family and friends on the day we marry.  Regardless of the wording used, the sentiment is the same.  They promised to love each other, in good times and bad, in times when there was a lot, and in times there wasn’t, in times of sickness and in health, and to stand by each other for as long as God gives them life together.

Love my Grandparents!
Love my Grandparents!
Christmas 2009
Christmas 2009
Grandma's 90th birthday on 2010
Grandma’s 90th birthday on 2010
At Pop's 90th birthday in 2009
At Pop’s 90th birthday in 2009

And even in the toughest hours, they make it look easy.

That is almost 69 years of marriage as God intended it.

There are so many things I share.  And there are some that just aren’t to be shared.  But make no mistake about this.

I’ve  learned how to be a better person, and a better Christian from my grandparents.  I learned how to be a better wife, from my grandparents.

This doesn’t detract in any way from the love of all the other influential adults in my life, including my own parents.  We learn different things from different people at every place in our lives.

But today, it’s about Grandma and Pop.  And how their selflessness and pure love never cease to amaze me.

I pray that though all adversity, my husband and I may set the same example for our daughter.

We are deeply, thoroughly, and completely blessed.

And when making lists its far best to make lists of your blessings than your struggles.

billy-graham-quote-our-days-are-numbered-one-of-the-primary-goals-in

 

 

“There’s a bit of magic in everything, and then some loss to even things out…”

As I walked away from the pizza place, holding my girl’s hand, with tears streaming freely down my face the song “Magic and Loss” by Lou Reed crept out of my subconscious and began playing with frightening accuracy inside my head.  I have thought of the song from time to time over the last 20 or so years.  The album was first introduced to me by a dear friend soon after the passing of my beloved cousin “Angel Meghan” at the age of 6 in 1991.  As an elementary school teacher I have been known to “think” in books, but its more unusual for me to “think” in song.  It isn’t too often that a song “speaks” to me…

When you pass through the fire, you pass through humble
You pass through a maze of self doubt
When you pass through humble, the lights can blind you
Some people never figure that out

You pass through arrogance, you pass through hurt
You pass through an ever present past
And it’s best not to wait for luck to save you
Pass through the fire to the light

Pass through the fire to the light
Pass through the fire to the light
It’s best not to wait for luck to save you
Pass through the fire to the light

I have a brother.

Birth congratulations to my Dad and my brother’s Mom, Kelly would be overdue by about 24.5 years.  But I have a brother.  And I am damned glad I do.

I have always loved him.  Always known he was there.  Always followed the tales of his life from afar.  Always sent a card.  But, never really got to spend any quality time with him.  Knew he was well loved.  Knew he was tons of fun.  But never really got to KNOW him.  Not by anyone’s fault.  Life and circumstances have a way of getting in the way.

And then some time in November I had to make a phone call.  I had to call him in the middle of the life he established Texas, and tell him Dad was sick.  Quite sick.

I had known for a few weeks.  I had seen him in the ICU.  I knew about the jaundice.  I knew in my gut things were not good.  But it took weeks to get Dad to let me tell my sister the full extent of the problems looming.  Then finally he let me call my brother.

And while the weight of the guilt of carrying that secret was coming off of my shoulders, I knew it was delivering a crushing blow miles and miles away.

A few days to digest, and then another call.  “I think you need to come.”

And that was all I needed to say.

He stepped off the plane a few days later at exactly the most perfect time.  He parked himself right in Dad’s apartment and stayed.  He was there for those overnights that were getting a bit tricky – to say the least.

As you pass through the fire, your right hand waving
There are things you have to throw out
That caustic dread inside your head
Will never help you out

You have to be very strong, ’cause you’ll start from zero
Over and over again
And as the smoke clears there’s an all consuming fire
Lyin’ straight ahead

Lyin’ straight ahead
Lyin’ straight ahead
As the smoke clears there’s an all consuming fire
Lyin’ straight ahead

Dad was getting sicker.  Quickly.  And despite our initial desires to deny the reality, we knew that we were walking uncharted territory.

I grew up with two sisters -one older, and one younger.  We grew up understanding each other’s strengths and weaknesses, and working on love throughout.  Now I was in a different trio.  A different dynamic.  For a different purpose.  One none of us wanted to face – but we were there.  And the “All consuming fire” was “lyin’ straight ahead.”

We formed Dad’s “Team,” his three children, with whom he developed three distinctly different relationships through the years.  We took the best of what each of us had to offer.  We laughed at old stories.  We cried out of sadness and frustration, and anger and disappointment.  We held each other with gratitude for the man whose common link between us all had done wonders to bring us together.

Waiting for Dad’s procedure at Columbia Presbyterian – the one that was supposed to be 45 minutes, and was unsuccessful at 3 hours- we were all in quite a state.  My brother, aware of Meghan’s countless procedures at one point looked at me awestruck. “You do THIS all the time?”

Well – not quite THAT… but to some extent yes.

And there were times that we sat, each on our own personal hell.  Wondering, worrying, agonizing, reflecting, and above all desperately wanting to make it better.  We sought the magic wand… and realized it was already in place.

They say no one person can do it all
But you want to in your head
But you can’t be Shakespeare and you can’t be Joyce
So what is left instead

You’re stuck with yourself and a rage that can hurt you
You have to start at the beginning again
And just this moment this wonderful fire
Started up again

When you pass through humble, when you pass through sickly
When you pass through I’m better than you all
When you pass through anger and self deprecation
And have the strength to acknowledge it all

When the past makes you laugh and you can savor the magic
That let you survive your own war
You find that that fire is passion
And there’s a door up ahead not a wall

Dad’s struggles.  Dad’s worries.  Dad’s heartache.  His pain.  They were about to end.  He was going to be free from his broken body.  He was going to be free of his suffering and his pain.

But what about us?

I know all about the truth, and I believe deeply in Heaven.  But I am selfish.  I miss him.  I miss my sounding board.  My ally in all endeavors.  My confidant for the “blow by blow” struggles that were too tough for others to hear.

“There’s a door up ahead not a wall…”

We met at the cemetery today.  We stood for a while.  We cried a little.  We prayed a little.  We held each other a lot.  We know he’s not there.  He is in the crystal blue sky and the winds that blow, and in the hearts of all who love him.  But I admit to not shaking the selfishness.

We ate pizza as a family.  The conversation was easy and light.  Except when Meghan butted up real close to her uncle to talk about her biopsy Tuesday morning. Darned Cowden’s syndrome won’t cut her a rest.   She told him all about the arrival time, and the procedure.  She spoke like a pro – someone easily twice her age.

So much uncertainty.  So much loss.  So much worry.  So much… so soon.

She has taken an extra love to her Uncle Shane these last few weeks.  This whirlwind that took her Grandpa from her just as their relationship was budding, seems to have left her a pretty cool uncle to share some love with.

As you pass through fire as you pass through fire
Tryin’ to remember it’s name
When you pass through fire lickin’ at your lips
You cannot remain the same

And if the building’s burning move towards that door
But don’t put the flames out
There’s a bit of magic in everything
And then some loss to even things out

Some loss to even things out
Some loss to even things out
There’s a bit of magic in everything
And then some loss to even things out – Lou Reed

I have a brother.  And now I have to let him go.  But not far.  And certainly not forever.  For no one can live through what we lived through these last few weeks and remain the same.  There are experiences once shared that can not be forgotten.  There is respect earned that can never be lost.  The lesson, the reminder that life is fragile and fleeting remains forever.  I always had 2 sisters.  And I always loved them so.

But now, with an ache in my heart, and tears on my face, I have a brother too.

“There’s a bit of magic in everything, and then some loss to even things out…”

Photo credit -Meghan 12/28/13
With a “Smile” from Grandpa Tom

Give Thanks…

I like fall.  I prefer the optimism and new beginnings that come with spring, but I do love fall.  I like the sweatshirt jacket weather, and the pumpkins and apples, and the beautiful fall leaves.  I like basking in the mystery and wonder of the beautiful colors as they fall through the branches to the ground, and blow through the air with the brisk wind.  But, this year I almost missed it.

I sat on the steps Saturday as my husband frantically gathered leaves into bags so they could stop blowing all over our neighbors lawns.  And, in our haste I almost didn’t notice, or even take a minute to appreciate the beauty of what was before us.

fall leaves 2

A testimony on life, and a sad one.

We, like so many others, are busy.  We are painfully busy at points.  There is school, and work, and homework.  There are Physical Therapy appointments, and swim practices.  There are lessons to plan.  There is a house to maintain, laundry to do, dogs to clean, floors to wash, and marathon grocery shopping every few weeks to keep my allergy girl well-fed.  There is mail to sort – regular junk to be shredded, bills to pay now and bills to pay later.  And that’s just here.

There are family members grossly under-visited.  There are people we love so much that live right close to us – who we never see.  There are friends short distances away we haven’t seen in years.

And yet, usually we find a few minutes in the fall.  A few minutes to toss some leaves around.  A few minutes to giggle.  So many thoughts flooded my mind as the last of the leaves hit the bag for this week.  One more clean up and the trees will be bare for winter.  And I looked up at that bright red tree above my doorway and took a minute to give thanks.

I needed to give thanks for the tree, above the new roof on the place we call our home.  I needed to give thanks for my husband and the family and friends that helped it happen 13 years ago.

The fall leaves, like so many things that happen each year, are a beautiful reminder to give thanks – for beauty, for love, for hugs, for smiles…

fall leaves

Meghan got new glasses this week.  She got her first pair in 2009, and her eyes have worsened steadily.  As we picked them up, and she said, “WOW,” and “THANKS!”  all at the same time – I was reminded of the little girl, who is now a young lady.  I am struck by the genuine gratitude as her sight is restored.  I am thankful for my vision, and the doctors who are able to help her have clear vision.

Meg Glasses 2009
Meg Glasses 2009
Meg Glasses 2011
Meg Glasses 2011
Meg glasses 2013
Meg glasses 2013

“Oh how the years go by…”

I have a friend or two who have given thanks every day this month, and I enjoy reading their thoughts and thankfulness each day.

For me I am thankful – but it’s more like a flow chart.  One thing, one blessing, one bizarre set of circumstances leads to me being reminded of how many reasons I have to be thankful.

Tomorrow we go for that brain MRI.  The one that will confirm that the suffering endured these last few months by my 10 year old who has seen so much, is “probably” migraines.  Brain MRIs really suck.  The only part to really be thankful for there is the part when they tell you they didn’t find anything.

These have been some difficult weeks.  My heart is heavy, and worn.  But I am thankful:

  1. For my daughter, and her unfailing determined spirit.
  2. For my husband, and his loving sense of humor, and his unending patience.
  3. For my parents and grandparents, and the blessings of having them.
  4. For my siblings, as we grow and experience life at different stages and paces.
  5. For nephews of all ages and stages.
  6. For my cousins and aunts and uncles all over the country – and for Facebook for helping me connect with so many.
  7. For the friends who refuse to give up on me, even as I am not available – again.  I take solace in knowing they will be there when I am.
  8. For those I love who are sick in mind, body and spirit.  Their strength inspires me.
  9. For the doctors who care.  Whether they get it right or wrong, my heart is open wide for the ones who care.
  10. For Meghan’s teachers – past and present – school and church, and their ability to instill a love of learning.
  11. For Internet friends – who support when other’s can’t.
  12. For dogs, and their unending loyalty.
  13. For two secure jobs in our home.
  14. For giggling, and tickling and fake hand-made flowers.
  15. For those of you who take the time to follow our journey.

40 years

I turned 40 last week and it wasn’t so bad.  I am thinner and stronger, and more determined than I was in high school – albeit a lot more gray.

  • I guess that makes me thankful for hair dye.
  • And for boobs that don’t sag, and no need for a mammogram.
  • For size “small” – cause who knew people wear that?
  • For the Isagenix that taught me to eat nutrient rich food.
  • For the prayers of friends, and the strength and stamina to endure.

MRI tomorrow.  Results to follow.  Then, we will give thanks even for the torture of migraines, with the knowledge it beats the alternatives.

MOSTLY I AM THANKFUL FOR HOPE, as the Global Genes Project says – “It’s in our genes!”

rare meg

Give Thanks!

“Count Your Many Blessings…”

Count your many blessings, count them one by one.  Count your many blessings see what God has done…”

The song has been stuck in my head all afternoon.  I remember as a youth singing the song in church.  I must have sung it plenty of times, because the lyrics are stuck in my subconscious.  And, as things int he subconscious tend to do – they often pop out at just the right time.

rare supermoms

 

A busy weekend full of blessings.

Saturday we celebrated the anniversary of my Mom and StepDad.  25 years is quite a milestone, and we were so thrilled to celebrate with family and a few dear friends.

Mom and Ken anniversary

 

What a blessing that among the guests we had Grandma and Pop, and Grandma Hansen.  Although we missed Grandpa Hansen we were so thrilled to count our blessings together.

Mother’s Day morning I woke alongside my awesome husband.  I was greeted by my beautiful daughter and lots of hugs and kisses.  Some hand made cards, and a few nice gifts and we were off to church.

We traveled after church. to visit with Felix’s Mom and Dad.  We endured the (It could have been worse) Belt Parkway and spent some time with his parents, sister and nephew.  Felix’s Grandma passed away just a few short months ago, so this day was especially difficult for his Mom who was very close to her Mom.

On the return trip we make a quick visit to my mom and got to see the grandparents again.  How many 39 year olds can kiss a few Grandmothers on Mother’s Day?

How lucky am I to hug my Mother – a feisty lovable survivor of cancer and life?  How blessed am I to have her in my life -by my side?

As we headed home, absolutely exhausted.  That song started in my head.

“Count your many blessings…”

HappyMothersDay

I thought of the friends I have who are desperate to be mothers.  The friends who had to struggle to have the children they have.  The friends who have miscarried, and friends whose young children live in Heaven.  I thought about friends who miss their Moms, whose hearts ache every day at the loss – whether it was last week or a decade or more ago.  I thought about my friends who never got the years with their grandparents that I have had.

Shame on me for feeling tired.  How lucky am I to need a list to shop for Mother’s Day Cards?  How fortunate am I to have so much visiting to do that I can sparsely fit it all in?

One might think Mother’s Day is for relaxing – or spending quiet time alone.  But, I am aware that those years will come all too soon.  For now – let me run, and visit, and hug and chat.  Let me relish the moments in a life that is fleeting.

I kissed my little girl tonight.  I held her almost 5 foot frame and cuddled her as best I could.

She won’t be in school tomorrow.  A rampant virus, and her rotten immune system are not a good match.  She won’t plant with her science class the way she likes to.  She won’t play in the yard with her friends.

Tomorrow will be yet another day in the complicated life of a little girl with a multifaceted Rare Disease.  A day of  differences and disappointments.  A day she will handle with the same graceful smile she uses for every other aspect of her life.

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My daughter is the one who reminds me to count my blessings.

And, oh do I have many!