What will I put in motion?


Now is the time of year that I get slightly boring and somewhat introverted. We come upon June and July…a time of year when I was quite pregnant with both my babies and lost both my babies.


Ironically, this is the same time of year that we have our biggest fundraisers and our Courage Classic bike ride….motion…forward….Perhaps I cannot stay stuck in what June and July meant but what it could mean.


So now grief is measured on how many miles I log on the bike and how many grease marks I have on my legs. This motion forward has gained attention- we now have 52 members on our Courage Classic team; Summits for Samantha and we are working towards our goal of $50,000.


My motion: My annual grief has been overwhelmed by gratitude.


Today we also had our Epsilon Walk for Miles for Mito; attended by 120 people and raising over $4,000. Our walk…motion…forward.


Perhaps I can no longer be stuck in what June/July meant.

Yes, another month has passed with no posting. It has been a busy eventful month with many blogging opportunities but with busy comes lack of blogging.

I will try to catch up.

Tonight I am also supposed to post on Miracles for Mito.

But I am not feeling very mitochondrialy.

There is a fire in my backyard. Well okay, not really from my backyard, about 20 miles from my backyard but it enough to fill the air with an acrid smell. The sky is hazy. And there is a large plume belching grayish-orange smoke into the air.

This is what a fire does to you. It allows you to use words like acrid, plume and belching.

I do not like it.

And although I am minimally impacted, I have many friends to the Northwest who are closer. We have been asked to volunteer our truck if needed. I have an Eggplant Parmesan on hand and a spare bedroom.

Other than that we watch this very hungry fire.

Today we went golfing and looked up at the horizon. The winds were about 30 mph and the direction of the smoke-cloud would change with the direction of the wind. I thought that this must be a horrible fire to fight….note to self…is there a good fire to fight?  Beyond the canyon, I could see two areas where the fire seemed to be fueling.

“What do you think is going on back there?” I asked our friend.

“Chaos” he said.

Yes, chaos.

Tonight driving home, I could see the bright red flames on the mountain. They were not visible yesterday but they have spread. Chaos.

My very wise friend Stephanie posted something on facebook that I will steal for the moment:

There is something endlessly fascinating and horrifying about such destruction. The reminder that we are guests here.

To being a guest….as we observe and live these moments. If we are a guest of Mother Nature, I am asking her to change the sheets once I leave….and please, a big stinkin’ glass of water would be very helpful.

And to my friends further northwest, I make a mean eggplant parmesan and we do have a truck 🙂 …stay safe.

And to our firefighters….well you’re just really cool

HAHA! Happy Mother’s Day! It is also my day to post on our Miracles for Mito webpage. I find it slightly ironic that I was given Mother’s Day because although I am not bitter, I am glad the day is done.

I am glad I no longer have to listen to Tom Shane commercials touting the beauty of Motherhood and that it can only be truly celebrated with a diamond pendant; one for each child. I am glad that the hype from the Time Magazine article on breastfeeding has died down a little…..”Are you Mom Enough?” really?

Farewell Mother’s Day for another 365 days!

Hubby and I spent it in full rebellion of the Day. We spent the weekend in Beaver Creek with our lovely friends/family,  Scott and Tracy…..no children, only wine and a hot tub.

Fabulous.

Scott and Tracy, like us, thought their family would look different. It is refreshing and comforting to be with others whose expectations were different but still want to celebrate and honor their life.

Because here is what I have realized about parenting. There were many things in my life that I wanted to do but could not.

– I could not get into Harvard (I am many things but not a student)

– I could not get on the cheerleading team (really, my flying dutchman was quite horrific)

– I could not run a 7 minute mile (I am quite slow and have come to terms with that)

I was never told I could not be a parent. In fact, I was told to take precautions to NOT be a parent. I think many of us non-parents are in the same boat. This seemed kinda easy, why is it so hard?

And I know what many of my lovely friends would say right now, “Heather, you will always be a Mom.”

Which is lovely and nice but my children do not need my 24/7. In fact, they are just fine on their own.

And leaves hubby and I to find different ways to live our life.

Thank Goodness for Beaver Creek, Scott and Tracy, a hot tub and wine.

And thank goodness for my husband, who gave me a card this morning that said “If I had to do it all over again, I know that I would choose you.” 

Which sounds a little odd until you realize that hubby and I both carry some odd rescessive gene and the chances of us finding another person with this gene is about 1 and 800. If we both had chose someone else, our Mother’s Day might be very different. But we chose each other and it is so comforting that we are grateful for that dispite some really awful circumstances.

This Mother’s Day we also found a ski shop that had ski boots at 50% off. I am now the owner of new ski boots and custom insoles. SOOOO much better than a Tom Shane necklace.

Thank you hubby 🙂

So this Mother’s Day I celebrate expectations and moving beyond them. For those of us who thought we would be Moms. For those who have lived through a loss….missing their child or missing their mom. To honoring the life we now live, Happy Mother’s Day.

I KNOW. It’s been almost a month since I have blogged.

And it’s late.

And I should go to bed.

But I’m a tad wired.

It has been an emotional month as Spring tends to be. I have been busy organizing our Courage Classic team and it has been met with amazing success. We have 24 members signed up to ride.

This year I set a goal for myself. If the team raises $50,000 we can designate what clinic the money goes to. We can have $50,000 go to the Mitochondrial and Special Care Clinic.

You know what is crazy? I think we can do it. We have already raised $13,785. How nuts is that????

So dear readers, I hope you forgive me but I might be a little fundraiser manic until July. I continue to be amazed by what can happen when things fall into place. I keep telling myself  “If you shoot for the moon and miss, you’re still among the stars.” now I’m thinking, “If you shoot for the moon, you might just hit the moon!”

Holy Schmoly, the moon.

We have created a promotional video with our fabulous kids, you can see it here: http://www.youtube.com/watch?v=vkEWQuHr2Kg.

AND if you would like to donate (but no pressure, really) you can read about our story here.

The biggest thing for me is that we are making something happen….and it is the most overwhelming, amazing feeling, in spite of all of the bad…..it makes my soul feel good.

Pretty stinkin cool.

My garden needed a little attention this weekend.

Perhaps it is the outrageously warm weather.

Perhaps it’s the fact that my ski season has been cut short due to said warm weather.

Never mind the reason, I found myself in front of the beds with a spade, a rake and a set of clippers. As I cut away last year’s dead, I found a new little world of green waiting to be exposed to the sun. I found my tiny rose bush had survived a winter season and that our tree that sprouted the summer we lost Samantha had grown pink flowers.

I remembered how much I liked my garden.

I kind or conduct my garden the way I conduct my life…..if you’re non-evasive and pleasant in my space, you can stay, even if I don’t know quite what you are.

I have a lot of lovely unknowns in my garden.

I raked leaves through my strawberry patch, worried that I might pull strawberries up in the process but here’s the skinny on strawberries……

Strawberries, for as lovely as they are, are tough little berries; vicious in fact; they are currently staging an invasion on the vegetable garden….lobing tiny strawberry seeds into the zucchini area.

As I raked through the patch, not a single strawberry plant uprooted. But I did smell a lovely, spring scent….wild mint. Ahh, wild mint….I will wage a war against your weedy attitude in a couple months but for now you can live with the crazy strawberries.

I packed three bags of old, winter growth.

I sat in front of my garden and promised this would be a new summer; a summer of frequent watering’s and diligent wedding’s. The garden sighed and rolled it’s eyes, it hears my promises every summer and still manages to produce lovely tomatoes despite my neglect.

As I packed up my tools, a butterfly landed on my rake and visited for a while.

Hello Spring.

There was nothing special about today….

Just a collection of simple goods.

Our non-profit is growing. We are reaching out to people.

Our next event has already raised $2,500.

Already!

But today I didn’t win the lottery.

I wasn’t in Mexico on the beach.

In fact today was spent at work…..But I am making my numbers. And when you work in sales, making your numbers is kinda fun.

In September I moved from the retail vertical into non-profit.

I love the non-profit sector. I really do….how great is it to represent clients who want to cure cancer?

And today when I was walking into the office, I ran into a co-worker, “Heather,” he said, “I don’t mean to be nosey but ever since you moved into non profit, you seem incredibly happy.”

It’s nice when people notice that you’re happy.

I even had to clean the house today….but something still kept me happy….I have a habit of keeping old cards on the mantle….birthday cards, Valentines Day. I was gathering old cards when I noticed a clay heart on the table with a note. I hadn’t seen this before.

I opened the note attached to the heart, it was dated 2.12.12 and said “Dear Samantha, My love to you always, wherever you are, Love Grandma”

…..this note was from Samantha’s Grandma Lyn.

And I thought of the tiny little things that happened today….our non-profit, being happy where I am, today, right now, at this moment and a sweet, dear lovely note from Samantha’s Grandma, and felt so very grateful.

Nothing dynamic, just a little collection of good.

And it made for a lovely day.

There is an Austrian band called Opus that had a European hit……Life is Life.

I think it’s a funny song. The lyrics are simple…

LIFE!
Na Na Nana Na
Life is life!
Na Na Nana Na
Dadada dub dub LIFE!

I liked the lyrics because I could put anything in it….

SHOES!
Na Na Nana Na
Shoes are shoes!

But on long nights with Samantha, this song would pop in my head; maybe as a reminder that life is just that….life. No guarantees, no refunds, ups, downs, life is life.

There was an interesting case this week about a couple in Oregon who sued a prenatal testing company because their child was born with Down Syndrome after being tested negative for the disorder.

They won $3 million on a wrongful birth case.

Whether you agree with the couple or not is not why I’m writing this.

Had we known about Samantha’s condition in utero, I don’t know what our decision would have been.

I consider it a blessing that we didn’t know.

Because the unknown, as hard as it has been, has brought us incredible gifts and introduced us to amazing things along the way.

It changed so many of us.

And here is the thing, life is unknown. Life is a risky business. When we hear of someone in accident, we automatically say, “were they wearing a seat belt?” “Did they have a helmet?”

Did they take all of the precautions to avoid the risk?

This weekend we had our Miracle for Mito support group meeting. Six years ago I had no idea what mitochondrial disease was, nor was a really concerned. I was newly married, starting a family….

This weekend I sat in a ball pool with our mito kids while the parents were in a pull-out group; learning about new treatments.

During the support group, my dad walked into the play gym to find a nurse holding Jacob, our lovely music therapist singing to a little girl with mitochondrial disease and me, trying to adjust sunglass on a little boy so the light didn’t give him seizures.

He laughed as a little girl danced around him to ‘Mary had a Little Lamb’.

“This is good,” he said, “this is important.”

And I looked around as to where life had taken me….crazy, unexpected life….unplanned, genetically challenging life.

And I was glad I never knew results to a test…..I was glad didn’t know where life could take me.

PS…..my lovely friend Jenny has a great perspective on this issue. You can find her here.

I was traveling last week and missed two very important dates; Rare Disease Day and Dr. Suess’s birthday.

I sing praises to them both!

Dr. Suess….what type of brain thinks of a Grinch, a Lorax, a world of Who’s and a Cat in the Hat…..

Samantha loved Dr. Suess. Or rather she loved her daddy reading Dr. Suess. He would raise his voice as the words got silly “I can’t stand this blither blubber! My toungue isn’t made of rubber!”

Samantha would listen and stare intently.

My personal favorite was Horton Hears a Who….a persons a person no matter how small.

As Rare Disease Day has come and gone, I think of our induvidual voices….quiet when as one but strong when united….kinda like Horton’s Who’s.

Check out the Rare Disease Day video here.

Hubby’s favorite was Horton Hatches the Egg. A story of Horton the elephant who sat on an egg through think and thin after Mazie, the lazy bird had left it. When the egg hatched, the baby was not just a bird but an elephant bird…..because Horton had sat so faithfully on that little egg.

“My goodness! My Gracious!” they shouted. “MY WORD! It’s something brand new! It’s an Elephant Bird!”

Now, those of us who deal with rare diseases might be thinking…..‘Elephant bird…..that’s some crazy, messed up DNA right there.’

But Horton’s Elephant Bird was born and exsisted out of love….like so many of our loved ones suffering with something different, a slight deviation of POLG1, or one extra or one missing chromosome; a trunk of an Elephant Bird where someone said there should have been a beak.

The special and the fragile; exsiting out of love.

It’s also on this week that our new project at Children’s Hospital has kicked off. Our contribution to the Reach out and Read program means that every child who comes into the Child Health Clinic for their Well Child check up will recieve a book.

Pretty stinkin’ cool. Who knew that these rare diseases would take us the places we are….and the places we may go….

And when you’re alone there’s a very good chance
you’ll meet things that scare you right out of your pants.
There are some, down the road between hither and yon,
that can scare you so much you won’t want to go on.

On and on you will hike.
And you know you’ll hike far
and face up to your problems whatever they are.

You’ll get mixed up, of course,as you already know.
You’ll get mixed up with many strange birds as you go.
So be sure when you step.
Step with care and great tact
and remember that Life’s a Great Balancing Act.
Just never forget to be dexterous and deft.
And never mix up your right foot with your left.

-Dr. Seuss- Oh The Places You’ll Go

I have never been one to connect with the afterlife.

But when we lost Samantha, there was no doubt in my mind that she had nestled herself in the inner-most workings of my heart.

And that was where she lived.

And I was fine with that.

But tonight, when I was doing laundry for our ski trip, I noticed a red, flickering light from her room.

So I went in and saw one of her bears flickering…..no reason for it….just flickering….

I sat down by this bear and asked him what he wanted.

This was Jack’s bear, given to him by his Grandma Lyn. When we found out he would be born still, I found Grandma Lyn in his room with that bear.

“I thought I was okay until I held this bear,” she said. And she tugged on his leg and he started playing ‘Hush Little Baby’.

Tonight I picked up this bear and randomly it started playing ‘Hush Little Baby.’

‘Hush Little Baby’ was my favorite lullaby’s for Samantha. I would make up my own verses.

“Hush little baby, don’t say a word, Mama’s gonna buy you a she-she-gurd.
And if that she-she-gurd won’t screech, Mama wants a house on a Malibu beach.
and if that Malibu beach is too pricey, Mama thinks Cashmere is very nicey….”

And so it went on…..with Lil Miss at un-godly hours.

And so tonight, I embraced Mr. Bear, with his flashy colors and lovely lullaby’s. I told him I had seen too many horror movies and if he was a crazy bear trying to connect with me through the demon world, I was hooked.

I also told him he was forever saved from the Goodwill pile.

I often look for signs from her even though she lives eternally in my heart.

Poor Bear, I will now always wait for his little lights and ‘Hush Little Baby’ song. He had no idea what he was signing up for.

My fellow warriors…..good job today. You can nestle anywhere.