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.

18 months ago we started a small non-profit in memory of our daughter.

As we planned our marketing strategy, we joked that we were ‘No Susan G. Komen‘ and someday hoped that we would be.

Today, I’m not so sure.

Today, I think there might be something nice about being tiny and slightly obscure and helping in small steps were we can.

The interesting thing about non-profits, especially medical non-profits is that they are emotionally charged, as they should be, lives are at stake.

Susan G. Komen’s decision to stop funding Planned Parenthood did not enrage me but it did surprise me. I looked at it as a PR nightmare and I immediately made a donation to Planned Parenthood.

Because as a non-profit, as a private enterprise, Susan G. has the right to endorse or not endorse who they want to. As a return, I have the right to sponsor or not to sponsor who I want to.

But honestly, the whole thing makes me sad.

Because people I love have this disease and it doesn’t care about politics, or women’s rights or Roe v Wade or who is liberal or conservative. In fact, it is slightly color blind and does not recognize pink.

Perhaps (as odd as this may sound) we have made people over-aware. We think that by buying a pink, frozen pizza, we have done our good. That by NFL players donning pink socks, everything is okay. That millions and millions of endorsement dollars are going to this foundation….an army of pink ribbons fighting this battle.

But talk to anyone going through this and it is not all good. Words don’t describe how not-all-good-it-is.

Susan G. has transformed the support for breast cancer. They have created communities for women going through this; support and guidance- letting people know they are not alone. And everyone, everyone knows the color pink.

Now it is time for Susan G. to stop painting the town pink and stop trying to see what new snack food can develop packaging in a lovely shade of rose. Perhaps now is the time to remember why they started on this road in the first place, to offer help…..for everyone.

I think I’m happy with us being small and slightly obscure….

Call me Judgey Judgerson.

My post last week was comparing my grief to someone else’s grief.

Perhaps that was poor form.

Last week, a dear friend of mine had come home from Germany because her father had passed away after a long battle with Alzheimer’s.

While my friend was away taking care of her family, her dog was hit and killed by a car.

And I thought of my friend and her dear puppy, everything she had gone through the last week and I felt incredibly sad.

And I felt kind of crappy about my last post.

Because I have no right to gauge how anyone else feels about their loss, I can only gauge my own. And my even own sense is a moving target, varying from minute to minute, day to day.

I once talked to a friend who wrote about mourning the loss of his mother. “It was so intense,” he said, “I could not get out of bed. The sadness seemed to consume me. Ironically, my mom and I were never very close.”

My friend decided to see a Hospice counselor and together they determined that he was mourning his mom but he was also still mourning his first marriage.

Sneaky Grief, trying to get a package deal…..

I always feel a little cheated, a little one-up’d when explaining a situation and someone says, “I know how you feel.”

Because we don’t. Our feelings are masked by years of experiences seen only through our eyes. I don’t know how you feel. You don’t know how I feel.

But that’s okay, we can respect and empathize, listen and provide comfort. It does not help anyone to proclaim “you have not been through what I have been through….you have no idea lady! ”

That would make me a grief snob. And if I have to choose what I want to be snobby about, Grief is not on my top ten list; shoes yes, grief no.

So I will not rank anyone’s pain. I will not judge.

Or at least try not to.

Or at least acknowledge when Judgey Judgerson rears her ugly head.

And to my dear, dear friend…..you know who you are. I hope you know how much I love you and how sorry I am for your loss. If it is any consilation, Samantha is taking good care of your puppy.

Today I was at a business lunch.

The woman we were meeting with was grieving the loss of her 14 year old lab-husky mix. She talked openly about her loss with tears in her eyes. “I miss him so much. He was my baby. Losing him was like losing my child.”

The words hung in the air losing him was like losing my child.

My co-workers/lovely friends were at lunch too and know my story well.

We all averted each others eyes.

I took a roll and started picking the sesame seeds off the top.

The woman pulled out her phone and started showing us pictures. She went into great detail about how sick he became; how he barked aimlessly at the door, lost bladder control and couldn’t walk up the stairs.

They had to put him down.

And I know it was very, very sad.

But I don’t think it was losing-a-child sad.

I continued to pick sesame seeds off my roll until the phone came my way. I looked into the brown eyes and grey muzzle of 14- year old Fido and told her how sorry I was for her loss.

I was surrounded by a pile of sesame seeds so I tore at my bald dinner roll.

I wondered if in return I should pull up pictures of Samantha and tell my story….no really, I didn’t wonder that but it would have been interesting to see the outcome.

Instead I mutilated the bread.

Two hearts; one that I share with the world and one that I hold very close. I think it’s a way of survival in order to function during awkward luncheons…..the closed heart is a little scary for those who do not know me.

Because you can talk about losing your dog over lunch with strangers. Many people have lost a pet….you can compare stories about a lovable companion gone too soon. You can talk about how the pain is comparable to losing a child among those who have never lost a child.

To talk about losing a child over lunch with strangers is a little too close to our hearts. You have to be invited to share that heart….trusted with a sense of intimacy and even then, there are times when it is too much.

I get that.

So instead I debated between fish tacos and a tuna wrap. I excused myself for a call that I really didn’t have to take. I refreshed my lipstick. Upon my return, a coworker shot me a supportive glance.

I was happy my coworker knew about my other heart. I was grateful that she handled it with subtle care across the table.

Scooting back into the booth, I slathered butter on my mutilated roll and asked our lunch guest if she planned on adopting another puppy soon.

Last Monday was my birthday.

“41, life’s just begun,” ….this is what my husband has claimed as my mantra.

It’s a good mantra but at 41, I feel I have lived quite a lot of life.

We drove to Fort Collins for a fancy birthday dinner.

On the way over, my husband asked if I this is where I thought I would be at 41.

I glanced over at him. He has grown a beard for the winter. Every year when it grows in, it becomes more and more speckled with grey. The grey mixed in with the ginger makes him look a little older in this distinguished, rugged manner. His beard matches the orange in the frame of his glasses which matches his turtleneck.

I looked over at him, driving down College St. and was happy he’s my husband.

“Honestly?” I said, “I thought we would be in a different place. I thought the back of my car would be littered with french fries and stuffed animals. I thought that on my 41st birthday we would be debating what kid-friendly restaurant would take us for the evening. In my head, my expectations were a little different.”

He reached over and patted my knee, “yeah, me too.”

“and it’s not that it’s bad. Look at us, we’re going to a nice restaurant to meet great friends, drink wine and have a fabulous meal. Tomorrow we’re getting up to ski. And I love you. And I love that you love me. And I love that we have helped each other through this. But no, I had expectations for a different 41.”

And he held my hand as we drove to the restaurant.

Expectations suck.