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.

beautifu;

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.

self love

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

“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!

 

“I hope you never lose your sense of wonder…”

Meghan left tonight for the Father Daughter Dance with her Dad.  I am always so grateful for him, but especially on nights like tonight when he can show her the time of her life.  She needs that time – to be happy and carefree.  She needs time to just be a kid.

Father Daughter Dance November 2009
Father Daughter Dance November 2009

I looked back on some old photos from dances in years past.  I know it sounds cliche, but I can not believe where the time has gone.  It stung especially I think this weekend, as my girl lost her last baby tooth, and came to the realization that Santa, and the tooth fairy, and all that magical mystery of childhood isn’t “real” in the way she had thought.

Father Daughter Dance November 2010
Father Daughter Dance November 2010

I think she took it better than me.

I cried a lot this weekend.

I think I am angry too if I am honest.  I think I am not just sad, but angry.

And that’s ok.  I have to let myself feel even the ugly emotions when they are in there.

I am angry about Cowden’s Syndrome.   I am angry about the cloud it carries, even on the sunny days.  We always seem to need to pack an umbrella in some game of anticipation – not designed to be won, just played.  Forever.

I have said before, and I will say again – if it was just me…

Father Daughter Dance November 201
Father Daughter Dance November 2011

But it’s not.  It’s her too.  That is reality, and it really does torture me sometimes.

All parents feel pangs of sadness as their children grow.  And, Meghan being my one and only, I am sure the pangs sting extra hard.  But, there is more than that.  We deal with something most parents don’t.

As her age increases the looming cancer threats that Cowden’s carries with it increase as well.  At her age, the biggest threat is thyroid cancer, and we are battling the beast head on.  We have dealt with, and continue to fight with the AVM in her knee, and we have gotten past the lipoma in her back.  All  thanks to Cowden’s Syndrome.

But, as she grows and matures, so does her body, and with it her wisdom.

She looks quizzically at my silicone breasts and her own developing ones.  She wonders.  Sometimes to herself.  Sometimes aloud.  When will it be my turn?

She asks if she will be able to have children, or if she will need to have her uterus out first.  She asks that if she does have children… do they have to have a PTEN mutation?  Do they have to have Cowden’s Syndrome?

Too many questions to flood the mind of my 4 foot 11 9 year old.  Too many questions for the string bean with the developing body.  Too many worries for my baby girl.

I am angry.  But thankfully she is not.  She takes each day as it comes.  She accepts the eventuality that one day the biopsy will not be negative.

Father Daughter Dance January 2013
Father Daughter Dance January 2013

I sheltered her for a long time, but they made me lay it on the line this year.  So we had the “cancer” talk in the waiting room of Memorial Sloan Kettering last month.  I told her there was no guarantee she would get cancer.  So she spun the question and asked me how many people with Cowden’s I interact with have NOT had cancer.  The number is small.

So we talked about the benefit we have that others don’t.  We talked about how constant screening means we will beat whatever beast tried to get at us.  We will be vigilant.

dance in the rain

We will win.

I get angry sometimes.  She just finds other ways to make me smile.  She keeps my heart soft.  She is my rock.  Wise beyond her years, and still a kid at heart.

I hope you and Daddy dance your hearts out tonight!

Thankful for… that first piece of pie!

I was going to avoid boring everyone with the same drivel that has been written over and over today, but I couldn’t resist.

It’s hard not to think about what you are thankful for on a day earmarked for reflection.

So, here it goes…

I am thankful for my husband.  He stays behind the scenes all the time.  He never looks for the credit in anything we do, yet he is the driving force behind our marriage and our family.  He knows when to make me laugh, and when to hold my hand.  I am not sure how I could have gotten through this year (or the 12 before it) without him.

I am thankful for my daughter.  She reminds me every day what is important in life.  She inspires me to push through adversity, and to keep on going – even when the going gets rough.  We share a lot (maybe more than I would like… darn Cowden’s Syndrome) and I could not ever ask for a kinder, more compassionate, loving daughter.  Even on the days we go head to head – I am the proudest Mom.

I am thankful for my “furry children,” my Allie and Lucky.  Their unceasing loyalty, their love and companionship bring such joy to all of us.  Plus – there is nothing like rubbing a belly on a stressed out day to make you feel better!

I am thankful for my parents, and their “being there.”  Sometimes that’s all you need is for someone to be there.

I am thankful for my siblings… all of them so very different, yet all so incredibly important to me.  I am thankful that even on the days we don’t see eye to eye – our love is strong,

I am thankful for my nephews, and the joy they bring, just by being themselves.

I am thankful beyond words for my grandparents.  Their support through these last 39 years, has been pivotal in my development as a person.  I am certainly a better, wiser, stronger woman – having learned from their example.  I continue to learn from them each day; lessons of love and compassion.  Not many people my age are so fortunate. 

I am thankful for my home – more this year.  I celebrate the fact that we passed through “Superstorm Sandy” virtually unscathed.  I am prayerful for those who have lost so much, and I am trying so hard -to recognize the “small things.”

I am thankful for my friends – near and far.  I am thankful for my local friends, my college friends, my friends from work.  I am thankful for the friends I see often, and the ones I hardly see at all.  I am thankful for my “cyber” friends, that I have “met” through support groups, and this blog.  The joy of knowing you are not alone can never be understated.

I am thankful for my health.  I know that may sound strange, considering the whole premise of this blog is about a genetic disorder that compromises the health of myself and my daughter – but hear me out.  I have this year alone undergone 2 major operations, and recovered.  I survived breast cancer without ever needing treatment.  I am able to walk, to run, to care for my child, to exercise, and move freely about my world.  While I have health concerns, and Meghan and I will always have them – I recognize how much health we do have, and I am thankful.

Finally, and the one thing that brought the biggest smile to my face all day – I am thankful for my daughter’s first piece of pie.

Meghan has always had food allergies – gluten, dairy and soy.  This year we made her a pie by rolling out her cookie dough as the crust.  We filled the middle with coconut milk ice cream, and topped it with her syrup.  She was so excited.  It wasn’t until I cut her a piece and she asked me how she was supposed to eat it, that I realized she had never had pie.  Sometimes the little things – are the big things!

Happy Thanksgiving one and all.