Nitty Gritty Dirty Grief

For everything you’ve done, you know I’m bound, I’m bound to thank you for it

This post is from the amazing Martin Family. When I think of the good things Samantha got from preschool I think of Caroline and Max and the very special gifts they gave us.

Samantha had a ‘dalmation’ coat that was spotted. Max would meet her at the preschool door saying ‘Puppy coat! Ruff, ruff! Puppy coat!’ and he would help take the coat off.

I still cannot give that coat away.

I never knew two small children who knew my daughter….loved my daughter they way that they did.

What Mom, sweet Rebecca does not mention in her post is that their fabulous party raised over $500 for our foundation.

Two sweet little people decided to forgo their birthday presents and raise this money. My favorite, most-enduring story is that Max did not want to give us the money. He wanted to wait until he was an old man, until he went to heaven. He wanted to give the money to Samantha himself.

I am amazed.

I think maybe we all saved each other. In Caroline and Max’s world, Samantha has not gone anywhere, she is a fairy, a smile, a rainbow, a bit of light and they carry her in her heart everyday. In my world, they remind me to live my life with her, on my shoulder everyday…to embrace who she was and the joy she can still bring.

Thank you Martin Family- this is their post….and this is the Martin family, could they be anymore beautiful?

Dear Miracles for Mito,

Two years ago I carried my son Max into a special needs preschool for the first time. I carried him because even at almost three years of age he lacked the energy and coordination to walk very far. There was another child being carried in that day. She was a few months older than Max, but she looked much younger. She was cradled like a baby in her mother’s arms. She could not sit up or hold up her head very well. I watched them.

The mother, Heather, looked so pulled together, so happy, despite what was obviously a very tough situation. I felt embarrassed. Here was someone dealing with so much more than I was and she was handling it so well! What was her secret? I wanted to talk to her. I was desperately lonely in our world of unknowns. But I could not talk to her, I didn’t know how.

The months went by and my older daughter Caroline fell in love with that little girl, sweet Samantha. Every day at pick up she would go over and sit near her and watch her. Sometimes she brought things to show her, even though she was not sure if Samantha understood. Caroline connected with Samantha in a way I will never quite understand, they just clicked. Max too loved Samantha, he shared his mornings with her for a whole school year. Every day he would report to me if Samantha had cried. “Antha cried.” He would say with the saddest look on his face. He was so concerned for her. I was told later by Heather that he even tried to stop her from picking up Samantha’s wheel chair one day. He was not sure who Heather was and he was not about to let his dear Antha’s chair be taken away.

Finally in the Spring I got up the courage to talk to Heather beyond the small chit chat that happens in the school doorway. Max was due for an MRI and a Spinal tap at Children’s Hospital and Samantha was there at the same time. Samantha was hospitalized due to another of her many medical battles brought on by mitochondrial disease. Heather took the time to talk to me and my husband as we waited for Max to get out of radiology. I had meant to be there for her, to try and be supportive of their situation, but she was the one who was there for us. We agreed to chat more and to get together.

When Samantha was out of the hospital they came over for a visit. Caroline stayed by her side the whole time. The very first book she read on her own to anyone was read to Samantha that day. Meanwhile Heather talked with me and encouraged me. Heather understood, like it says on the Miracles for Mito web site: that no one should ever walk this journey alone. By that time we knew that Max had a rare metabolic disorder, but we also knew there was a treatment and that he had a positive future. I was slowly finding my way and accepting that we were on a different path in life and that it was ok to be on that path. Maybe I too could be that pulled together woman walking into preschool with a smile on my face.

It was only a short month later that Samantha passed away. It devastated me beyond description. Samantha and her mother had changed us. They had loved us and encouraged us even when their own plate was full to overflowing. Samantha had touched my children in the most beautiful way. They adored her. Heather and Samantha had shown us how joy is to be had even when life is tough. They gave us a gift of a new way of looking at life’s trials.

We wanted to give a gift back to them. My husband and I had planned an early birthday party for the kids to try to take advantage of the nice weather. I asked Max and Caroline if they would like to forgo presents to raise money for something that could help other children. I gave them choices; I wanted it to be their decision. Without hesitation they both agreed that they wanted to raise money for Miracles for Mito. In the past year it was a rare week that went by when one of them had not mentioned Samantha.

The party was a true celebration for our family, it was about more than just birthdays. It was about the journey our family had taken over the last few years. It was acknowledging our fresh perspective on life. A perspective that Samantha herself had deeply impacted.

We no longer walk alone and we don’t want any other Colorado families to have to walk alone either. We are honored to pass along the birthday generosity of our friends and family to Miracles for Mito to further that goal.

Thank you,
Rebecca, Ray, Max and Caroline

Nitty Gritty Dirty Grief

What You Must Know

I think my last post scared some people….

Or made them worry.

But here is what you must know….I can’t continue this blog without being perfectly honest, pouring my heart as if I have no audience and working through this nasty business of grief. So let’s get to it.

My Auntie Trace sent me this poem a couple weeks ago. I have spoken of Auntie Trace often- she makes the most amazing brownies and she knows kindness…through loss and through love.

I am grateful that she is there to tie my shoes and go with me everywhere like a shadow and as a friend.

Kindness: Naomi Shihab Nye- 1980:

Before you know what kindness really is you must lose things,
feel the future dissolve in a moment
like salt in a weakened broth.

What you held in your hand,
what you counted and carefully saved,
all this must go so you know
how desolate the landscape can be
between the regions of kindness.

How you ride and ride
thinking the bus will never stop,

the passengers eating maize and chicken
will stare out the window forever.
Before you learn the tender gravity of kindness,
you must travel where the Indian in a white poncho
lies dead by the side of the road.

You must see how this could be you,
how he too was someone who journeyed through the night
with plans and the simple breath that kept him alive.

Before you know kindness as the deepest thing inside,
you must know sorrow as the other deepest thing.
You must wake up with sorrow.
You must speak to it till your voice catches the thread of all sorrows
and you see the size of the cloth.

Then it is only kindness that makes sense anymore,
only kindness that ties your shoes
and sends you out into the day to mail letters and purchase bread,
only kindness that raises its head from the crowd of the world to say
It is I you have been looking for,
and then goes with you everywhere like a shadow or a friend.


Nitty Gritty Dirty Grief

It’s All Good Heather


I’m back.

It’s been three weeks and I have missed you.

I’ve thought long and hard about why I left for a while and can give you a very long, detailed list….work, hubby, eye brow waxing, belly button lint collecting, making a sweater from said belly button lint, remembering to inhale, forgetting to exhale….remembering to exhale…..long, hard exhale.

But here is the truth.

Grieving sucks.

Not only does it suck…like math homework and cleaning the toilet but it SUCKS, it sucks the very life out of you. It reminds me that I am a fragile person, that I am not as strong as I think I am. It drinks my mental and physical reserves like honey and then smacks it’s lips and asks for more.


And I have realized that when work seems out of sync, life seems out of sync, hubby and I seem out of sync, that I have no reserves to draw on. I hide in my little toe while my alter ego, ‘It’s-All-Good-Heather’ tends to my basic life support, toileting, the brushing of teeth, combing of hair, the inhale and the exhale. She is a good care-taker.

It’s-All-Good-Heather searches for my big girl pants only to find they are at the cleaners, she gathers reserves in tiny droplets….like collecting morning dew in baby leaves, she finds things that bring laughter and joy to draw me back out of my little toe.

It takes a lot of work- I can be quite stubborn- therefore It’s-All-Good-Heather has no time to blog….nor would she want to……topics seem silly when I hide in my little toe and she must worry about making sure my hair is brushed.

So that’s where I have been; hiding, gathering reserves, searching for joy in tiny crumbs and fighting that bastard Grief within the confines of my baby toe.

Fighting Grief in the baby toe is tough; it’s crowded, dark and particularly stinky when I wear my Keds with no socks. The good news is that there is no where I can hide and there is no where Grief can hide. It’s like High Noon.

I worried about telling you where I was. I like to be happy. I like to find joy. I like it when I like my life. But it isn’t always the truth and I know, know, you can handle the truth.