Nitty Gritty Dirty Grief

United Flight 203 to LaGuardia

Airplane travel still continues to crack me up. I always feel like I’m a bit outside of my body when I travel.



I also feel like people are a bit out of their mind when they travel. It is quite the observation on human behavior.



And certain things still crack me up…..



There is the flight attendant who wears earplugs during the flight and talks 5 decibels above what is necessary….



“Would you like a drink????”



“Club soda please.”



“WHAT???”””



“Club soda.”



“I’m sorry we are all out of Pringles.”



Never mind.”



“Here’s your apple juice.”



Lovely.



And the man…..the man who leaves the seat up on the airplane toilet.



The airplane toilet!!!!



As if it weren’t‘ bad enough with that blue stuff in the bowl and bad smelling hand soap.



He left the toilet seat up.



Bastard



And I think….he must do this at home….because who does this???? Who leaves a toilet seat up for strangers????



In the lovely lavatory, I lean myself up against the door, hike my suit skirt up and use the tip of my heel to kick the seat back down. Who knows what is on the nasty thing.



I curse my small bladder.



Curse you small bladder!



There is not enough Purell to combat the bathroom lavatory, especially when the seat has been left up.



But there are also times when I have found a good restaurant while waiting for the next leg. I sip Shiraz and munch bruschetta because there is nothing else to do. I find myself introspective and observant while waiting for a United flight to take me somewhere.



I hate to admit it, but I kind of enjoy those times.



Maybe I’ll get some Pringles.

Nitty Gritty Dirty Grief

What is the Call???

It would be easy to give up the fight.

Because it doesn’t really matter.

I don’t have to go to Children’s.

Because we don’t have a child who needs to be there.

It would be easy to turn our back on our mito cause.

Because we no longer have a mito kiddo. What difference can we make….really?

But every time I feel overwhelmed, insignificant and uncertain of the next step, someone reaches out and reminds me why this is important and why we fight to raise awareness, money for research and education.

Because mitochondrial disease sucks my left toe.

A 26 year old mom reached out to me last week and introduced me to Mabel. I hope her Mama doesn’t mind me posting but this little one-year old is so stinkin‘ cute and her mom is so very honest and determined in this tough, hard fight.

Welcome Mabel and Mabel’s Mama. You make me want to be a better advocate, to fight harder and remember that our own Mito girl is not here in body but certainly in spirit.

Thanks for the kick in the pants.


Nitty Gritty Dirty Grief

The Path

You cannot travel the path until you have become the path itself

– Hindu Prince Gautama Siddharta



This week I found myself in Beaver Creek, Long Island Sound, Manhattan, Houston and now I am resting my hat in Santa Fe for the weekend.



As I passed from place to place, airport to rental car, ocean to desert, I became more introspective. Nothing makes you contemplate life like sitting in an airport, watching the world go by.



I now I sit in a Santa Fe cafe and watch tourquoise clad tourists in cowboys hats (admittedly, I am one of them).



I was here last year, just weeks after we lost Samanta, searching for some thing, some way, some guidance onto the next step. I collected holy dirt, I prayed, I got my body massaged, I praticed the fine art of retail therapy and I searched.



It is a year later. And although I am still searching, perhaps I have found solace in the crazy comfort that I will always be searching.



I don’t know if I will ever trust the path; it can change so quickly. The best laid plans are only that, plans.



But a year later I trust that my footing is sound and my gait is solid. I guess that is all I can rely on.



And I still find myself collecting holy dirt, and praying.



I didn’t cry this year until I hung a Ben’s Bells at the Sanctuario de Chimayo. They are so lovely, our Ben’s Bells, so simple and perfect with their message….



Be kind



Be kind



Be kind



I hung it on a tiny tree in the middle of the sanctuary and hoped that someone who needed it would find it.



As I walked away, I heard the sweet, tiny chime of the bell in the desert wind. It was then that I started to cry for the simple beauty Samantha has taught me, for the people she has brought into my life and in the relief I found after a year.



And I sprinkled a little holy dirt on the bell, for extra-good juju.



And then I sprinkled a little on myself.





My little author’s note: I have had the most amazing people reach out and post the last couple weeks. I wanted to thank you. I am so very happy we are on this journey together.

Nitty Gritty Dirty Grief

Saturday Diddy

My lovely neighbor and friend has convinced me to join a blogger contest!

The topic is: Who is the person you are most surpised to be friends with?



And it has to be 300 words or less- that’s not a lot of words for a blow-hard such as myself but I tried to keep it short.

And I thought I would share…..

wish me luck 🙂

The Most Surprising Friendship:

Lonely, isolated, angry, misunderstood, denial…..words only touched the surface of what I felt when my daughter, Samantha was diagnosed with her disease.

Mystery, prognosis unknown, medically fragile, were the words her doctors used.

My beautiful daughter was six months old when she was diagnosed with rare, fatal muscle disease. I had quit my job, researched endlessly and felt incredibly lonely. I started a blog to pour my deepest fears and darkest emotions. Through that blog I met three other women who all had children with rare, fatal muscular diseases.

We emailed for a while, passed each other supportive remarks and one day decided to meet. In that first meeting, we were instant friends; we clung to each other like abandon sailors on a lifeboat. My new friends knew about uncontrolled seizures, respiratory toileting, manual catheterizing! They knew our doctor! They knew Samantha’s neurologist! They too had processed the hurtful painful words, respite, hospice, hopeless, helpless, and fatal.

We cheered each other in our unique ability to take on doctors, nurses, feeding tubes, seizures, 20 different medications to be coordinated in one day. We cheered our children, each precious, fragile child.

We had found a safe haven in our journey.

My daughter was the first to ‘go’. She took her last breath a year ago. And my special needs family gathered closer around me.

I lost my girl. I am a very real reminder to them that they too, could lose their child at anytime. But they have provided a secure sanctuary where I can celebrate, mourn and talk about the child I had and the mother I was. They celebrate every butterfly they see, every tiny reminder of my daughter and the miracle that we would not have met without our sick, precious children, and that is a true gift.


Nitty Gritty Dirty Grief

To be so Lucky

My lovely friend Inda played a song at our wedding- it was her song…

To be so lucky to find true love,

To be so lucky to find my way,

Be the thirst

Be the rock

Be the hope

Be tomorrow

Be so lucky to find.
People may not find us lucky. People may find us sad. At times, I may find us sad. But I have indeed found my thirst, my rock, my hope, my tomorrow

Yesterday I got to give money back to the people who saved Lil’ Misses life so many times. People who loved her. In this world of crazy, litigious, who-is-to-blame-why-can’t-you-do-more world of medicine, these doctors loved my girl.

And they loved us and we loved them
And it felt good to give back
And lucky
And that I had found my way, along this crazy path
But it was only because of you all who had given so generously to our cause, that we were able to give back to The Children’s Hospital.
And I thank you.

Our check to Dr. Collins and Mitochondrial Clinic.

Presenting our check to the famous Dr. E. I love her face here. This woman can take on the entire Children’s Hospital and not be fazed. I think she might be fazed

Dr. E, Maria, Sweet Sarah, lovely Jacob and myself.

It is good to be here- to find my way