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

FullSizeRender (2)

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

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