This week is Mitochondrial Awareness Week. In honor of this week, we have a different blogger who will post about their life with Mitochondrial disease on www.miraclesformito.org. I will also share these here.

Here’s mine from yesterday:

I have thought a lot about this post and what I want to say….the importance of advocacy, the needs of our children, how I have lost a child to this disease but that it is important to ‘carry on’.

Here’s the real scoop….. Mitochondrial disease sucks my left toe.

I hate it. I hate that it has taken my daughter. I hate that we fought seizures, muscle weakness, slow gut, urinary tract infections, MRSA, pancreatitis and numerous other problems.

I hate that my husband and I are perfectly healthy but some crazy recessive genetic disorder prevents us from having perfectly healthy children.

And I miss my daughter, Samantha every single minute of my life.

But outside of my grief and anger, I have found an amazing community, a community that has sustained us during and after Samantha’s short life. This community has not been easy to find. Mitochondrial disease is horribly under-funded and under-supported in the medical community. It is a disease that is hard to diagnose, difficult to control and there is no cure.

Blech.

But along this fight, I have found doctors who have said “I do not have the answers but I will do what I can to make you daughter live the very best life.”

And I have found friends with other mitochondrial children who are grateful to talk the idiosyncrasies of respiratory toileting and rectal valium. And they even have time to laugh about it.

This week is about those friends, the community we have found, the love and the fight for our families. This week is also about spreading the word about this disease, finding help and advocating for our loved ones.
Every day, we will post something new, a different family, a different fight, a different hope.

Welcome to Mitochondrial Awareness Week

Sincerely,

Heather Schichtel

Founder/Director of Miracles for Mito and Samantha’s Mom

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.

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.

Samantha’s Nonnie put together a preview of our Courage weekend!

Click on the link!

Makes you want to see the full length version and then sign up for next year!

Doesn’t it?

huh?

Next year?

Our life is full.

But there are holes, holes where Samantha would have been.

So we try and fill the holes; trips to Hawaii, ski vacations, weekends away….

Is it enough?

Does it fill where she should be?

The answer this year has been ‘no’, it is good, it is welcome, but it does not take away the ache, the vacancy of where she should be.

But this weekend, ironically, the one year mark of Samantha’s passing, I felt full, grateful, happy and satisfied for the life we had with our girl.

We rode with the Courage Classic, the annual bike ride for the Children’s Hospital.

It started on Friday, the day of registration. I waited for my packet and stated my name while still talking on my phone (important business call). The volunteer brought me my packet….

“Number 41!” she cheered

“41!” Exclaimed the volunteers.

I stopped my phone conversation, “What?”

“You were the 41st highest fundraiser last year,” she said. “Congratulations”

Inside the bag was a plaque that said “#41”, I got tears in my eyes because the only, only reason I was 41 was lill‘ Miss and her supporters.

Thank you.

The ride went on without issues, we made it up Vail Pass, Battle Mountain, Swan Mountain. We rode with purple and green ribbons in our helmets. We rode with our “Summits for Samantha” jerseys, her smiling face on the back.

When not riding we sat in the hot tub with a glass of wine and ate yummy dinners (we did ride 50 miles a day after all!) ….it was a good weekend.

On Monday, I rose with apprehension and looked at my watch, 6:30….a year ago she was still alive.

At 8:00 we started up Freemont Pass, I was grateful for the clear sky, my pounding heart and a chance to clear my head.

8:00, she was still alive.

I felt a burning in my legs, my lungs and my heart as I continued to ride….looking into the sky for s sign of her.

At Freemont Pass, we stopped for a picture of our team and a man approached me, “I’m looking for Heather,” he said.

Ironically, I was standing next to my friend, Heather and still trying to catch my breath.

“Which one?”

He looked at me confused. Heather pointed at me, “She’s the important one.”

I looked at her, “Oh I am not important, you’re important too.”

The man sighed, “Which one is the important Heather???”

“I guess I am,” I said.

“My wife told me to give this to you.” And he pulled out a gold box from his riding jersey. Inside the box was a pendant with Samantha’s and Jack’s name and the birth date on the other side. It was beautiful, heartfelt and perfect.

I started to cry….ugly cry….and hug this poor man who had never met me….stinky long hugs….poor guy…and my team cried and hugged this poor man.

“We know today might be hard,” he said.

Thank you poor man who dealt with my stinky, ugly cry. I never got his name.

11:00, we had lost her

My friend Jill did this ride for the first time; after day one and two she said she that it was great but would not do it again.

On day three she said….”I get it. I have been so in my head, so afraid I couldn’t do this or keep up with the team but today I saw someone going up Freemont on a hand cycle, and a team on a tandem and told them good job, and they said the same and I thought ‘what the f*$# is my problem? This isn’t about me. This is about the kids who live everyday just to be here.”

I love this ride.

At the finish, I saw ‘Grandpa Jim’ who volunteered for Team Courage this year. He rode a tandem bike with his 15 year old buddy Abe. Abe has Cerebral Palsy and cannot do this ride alone.

Jim rode with Abe 120 miles this weekend.

As we all crossed the finish line, I thought, we would not be here without her. We would not carry Abe 120 miles, we would not have organized a team to ride 150 miles for Children’s Hospital, it would not have meant enough as it does now.

And I felt full….of love, gratitude, and overall yumminess of who she has made us and the community she has brought together.

And that was enough. I felt full.

Thank you Lil’ Miss