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

Jacob- For Mitochondrial Awareness Week- by Maria

Tonight’s post is from our Vice-President and Mom-to-Jacob; Maria.

Jacob and Samantha were very similiar in thier presentations. I am often reminded of Samantha when visiting Jacob. Here is their story:

I often get the question “tell me about your son Jacob”. This is what I would tell you, if you are…

His Doctor:

Jacob has an unspecified Mitochondrial Disorder with deficiencies in Complex I and Complex IV. Jacob’s primary issues are epilepsy and his weak respiratory system. Jacob has severe epilepsy that is not fully controlled. Jacob’s seizures are divided into the following categories: Grand Mal, Complex Partial, Staring Spells, and Myoclonic Seizures. Jacob also has Oculogyrical crises, which are currently fully controlled. Jacob has several movement disorders (chorea, dystonia, and myoclonus), all of his movement disorders are controlled.

Jacob aspirates, and uses his g-tube for all food and medications. Jacob has central sleep apnea, and uses a bi-pap at night. He also uses oxygen as needed during the daytime. Jacob has low muscle tone, and needs full support of his body at all times. Due to Jacob’s weak respiratory system, Jacob uses a cough assist and vest treatments 4 times a day. Jacob gets nebulizer treatments 4 times a day, and is on Tobramycin every 2nd month to prevent pneumonia.

Jacob has global developmental delays. Jacob is non-verbal. Jacob has good hearing and vision. Jacob is not in pain. And I am sure I am forgetting several things…

His Teacher:

Jacob loves school. Jacob has always loved being surrounded by people, and kids are of course the best! The goal for Jacob in school is for him to be with kids his age. We are not looking at educational goals, e.g. reading, writing, and math. We simply want Jacob to be with other kids, and do as many things he can with his buddies.

Jacob loves music, loves having books read to him, loves going on the swing, loves doing an art project with the help of his teacher, loves playing with play-doh, and loves playing with finger paints. His new passion is Orbeez, which he very much enjoys to dip his hands or feet in!

Jacob loves when his friends take him in his chair around the classroom, to the gym or to the playground. Jacob loves playing with balls on the playground! Jacob is hoping he can be in school as much as possible during the school year, so if everybody could wash their hands carefully and stay home if they don’t feel well, Jacob can stay out of the hospital as much as possible.

His Therapist:

The only proven treatment for Mitochondrial Disorder to slow down further damage to the patient’s Mitochondria is exercise. It might be contradictive, since someone living with Mitochondrial Disorder is low on energy, and exercise will of course use up energy, but low energy exercises are very beneficial to Jacob. If you are not using your muscles for a while, you know what I am talking about. I remember how quickly I lost my muscles in my leg after my knee surgeries.

Therapy is therefore key to Jacob’s health. We want to work on Jacob’s range of motion and flexibility at all times, since Jacob needs help to move from each position throughout the day. We want to work on sitting. We want to get in the warm water pool at school each week to give Jacob as much freedom and movement of his body as we possibly can!

And speech therapy – how do you do communicate with a non-verbal kiddo? It is definitely not a challenge for every speech therapist, so we feel so fortunate to have a speech therapist, who is willing to work with Jacob on finding ways for him to communicate. We know that Jacob knows how to make choices with his eyes. Jacob also moves his lips to verbalize, and from time to time, we also get a vocalization. Jacob also has very subtle communication with how he moves his head, and how he uses his whole body to communicate if he doesn’t like a certain thing.

Jacob smiles when he is feeling good. Our speech therapist thinks outside the box, and doesn’t think that verbal communication is the only way to communication – and isn’t that true for all of us?

Our Friends and Family:

Despite Jacob’s Mitochondrial Disease, that is not the thing I want to tell you about Jacob because it is not what defines him. Jacob is the toughest and bravest kid that I know. He has a connection to life that I knew very few have. He has been close to death several times in his short life, and every time, he has decided to choose life. He has decided to fight against all odds. That is why Jacob’s illness is not defining him.

He is a kid who needs tremendous support and help in life, but he is at the same time someone who has a full life. He is very loved. Not just by his family, but by so many people around him. Despite Jacob not being able to talk, we close to him can see all the ways he communicates with us. He is a kiddo who goes to school, who works on his therapies every day of the week.

Jacob has dinner with his family every night, he plays in the pool in the summer. Jacob loves reading, cuddling, music, and yes his weekly massage! I am jealous every Wednesday morning when Jacob gets his full body massage…Jacob just sighs out of pure content.

It is Mitochondrial Awareness Week. I could write lots and lots about what Mitochondrial Disease is and what it does to a child and family living with it, but the message I want to leave you with today is that despite this disease, the basic needs of life is the same.

Independently, if you are a doctor, a teacher, a therapist, or simply a friend of Jacob and us, please try to see beyond the disease, and see the person Jacob is.

With love,
Maria HopfgartenVice-President, Miracles for Mito

Nitty Gritty Dirty Grief

To Remember

This evening I listened to an interview with a mother who had lost her daughter in Tower 1.

Her concern was that as time went on people would forget what happened on 9/11 and people would forget her daughter. I understand this, as time moves forward, I think about Samantha everyday but not everyone does. As the years go by will people forget our amazing little girl?

I did not know this woman’s daughter but I do remember that day and the days after. On 9/11 I sat in a waiting room about to start my new consulting job in Summit, New Jersey. When my manager came to get me, the first tower had been hit.

His wife worked in Tower 7 and was on her way into the office.

Summit was a commuter city and had been hit hard. The cars at the train station had marks on the tires as to how many days the car had been parked.

1 day

2 days

3 days

Was this person coming back?

I was stuck in Summit for 10 days. I didn’t know anyone aside from my new co-workers who were grieving lost family and friends. On Friday, I took the train into the city to see my friends, Scott and Laura, to get some type of human interaction, to hug and cry.

I will never forget the acidic smell of the city. The dust that had settled on everything. The posters! The posters of missing loved ones everywhere, papered through Grand Central Station. Lovely, sad pictures of people enjoying their lives, mothers, fathers, daughters, sons….people who were now missing.

I will never forget the prayer rally in the park five days after the towers went down; Buddhist monks chanting, drums beating, people singing and lighting candles, people praying, people trying to make sense of what just happened only to realize, there is no sense.

Ten years later, I can still smell that smoke when I think about that day.

I did not know this woman on the radio. I did not know her daughter but I do know the events of that day are forever in my mind. They have helped to form the person I am today.

And for me, as another grieving mom, I realized that even though people don’t think about Samantha everyday, to many people, who she was, has changed who they are; her sweet gummy smile, her tenacious spirit, the mystery of her tired body and her lovable personality.

Perhaps remembering isn’t always thinking about the event but how what happened changed us, made us think of the world differently, hold our loved ones closer, be less quick to judge. I can’t think of a better way to memorialize a life.

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.