Category: Nitty Gritty Dirty Grief

oof- this was the first couple years after we lost our girl, coping and recovery

The Inspirational, Devesational, Heartwarming, Heartbreaking, Mitochondrial Conference

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Last weekend found me in Pittsburgh- which was surprisingly quite lovely. I was there with my Mito Crew for the Annual Mitochondrial Conference. 

And Colorado had a presence! We had t-shirts, and a booth and chocolate and a video. 



It is good to have a presence…and a t-shirt….and a voice. This is a tough, tough disease with so much loss and so little awareness. The last two years I have come back from this conference thinking ‘My Good God, this disease sucks my big toe.’ 

It really sucks more than that but I try to keep my blog PG. 

That is not to say I am not positive nor I am bitter. I find myself incredibly impressed at the work, the tenacity and the camaraderie of this amazing group.

On Thursday we met this beautiful boy, Samuel.


Well, actually we met his mom first. Us Coloradans entered the Sheraton Premier Lounge (that’s right….I got status) lookin’ for a glass of wine and met Samuel’s mom on the way.

Samuel has a form of Mito called Leigh’s disease. His brother did too….Samuel lost his brother a couple years ago. His mom told his story and we greeted each other the way all Moms do who have lost their babies….a way of knowing….a saying of ‘I’m sorry’ but we are both sorry. And we are both happy to find another parent who is living on planet Earth but also on planet My Baby Died. It is a rare, sad, complicated, beautiful intimate bond.

And isn’t Samuel and that infectious smile beautiful. 

We set up our booth next to MitoCanada…cause that’s how we roll….international and all. The Director lost her little girl the same year we lost Samantha and is now diagnosed with Mito herself. Again, that bond….I showed her how much I adored her by snagging ALL of her MitoCanada swag.

And I know how sad this must sound to those reading this. But to us who live this life, we are so relieved to find others who live this same life…..and who find hope and who find love and who cry and who carry on the legacy of their child.

We reconnected with our many amazing, dedicated, funny, smart doctors along the way. Our own Johan VanHove made the trip. We had dinner with Dr. Saneto and I harassed Dr. Bruce Cohen to come and sit with us. To listen to Dr. Cohen and Dr. VanHove talk about Mito tests, results….my goodness….they too live on planet earth but also on planet…I am a Mitochondrial Doctor and too stinkin smart for this world.

I think it takes a lot of guts to be a doctor of a disease this complex and this devastating.



I left Pittsburgh happy and sad, hopeful and wanting. And knowing I will always have a place in this wonderful, intelligent, complex community. 

And knowing our little community is making a difference. 

And that in the end- it is good to be home! 

A Safe Place

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CRAP!

It’s May 30th…..and I seem to have forgotten I have a blog…

Well not really.

I struggled with the whole Mother’s Day post….. what to say about a holiday I truly despise but represents and honors many of the people I love.

I thought I could be snarky ‘I hate Mother’s Day’ Girl and dismiss all sadness with a cheeky ‘This Hallmark Day Aint Getting’ Me’ attitude….I’m stronger than ANY Tom Shane commercial!  But in the end, Mother’s Day kicked my ass….the weather was bad, I made a wretched, incredibly awful egg strada that everyone pretended to like.

“MMMMM….no Heather, the flavors are fantastic. What is that sun-dried tomatoes? Love it!”

I looked over at Hubs who was shaking his head no and grasping his throat.

Stupid Egg Strada.

And Mother’s Day ended with me in the tub, with a glass of wine, feelin’ it….feeling the pressure of the day, the loss of the day and the fact that I don’t know how to make that day okay for me.

It was an ugly cry.

Note to self…..next ugly cry will be done in baggy, cozy pajamas. Not naked in the tub….even if it is by candle light….that last Pilates class did nothing for me.

God Bless the ugly cry. I mean it. Nothing purges me more. Nothing sets the record straight better than a good shoulder shaking ugly cry.

A couple weeks before, I volunteered at the Children’s Hospital Memorial Service for the children who were patients at Children’s and had passed away in the last year.

I know, I know, I know, what you are thinking…..but I wanted to be there. And it’s hard to explain why…..

It was a safe place. For me, for other parents dealing with their grief, it was a place where I could express who I was, and how I came to be openly, with no pity and with no fear.

It was a relief to put a hand on a mothers’ shoulder and tell her she will be okay….she might make a bad egg strada and wonder why she chose to cry naked in the tub….but she will find beauty again….and it will be more amazing because she will know how fragile it is.

Just finished ‘A Fault in Our Stars’ by John Green, if you haven’t heard of it, it’s a book about two teenagers who have terminal cancer and fall in love.

I know, I know, I know, what you are thinking. But it is a lovely, lovely book….a bit of a safe place for me again…there is a terrific quote…. “Grief does not change us, it reveals us.”

Reveal.

To have a revelation: the act or process of disclosing something previously secret or obscure.

There were several revelations that Mother’s Day…..a safe place…to feel…to truly feel, allows us to come back and be whole again. 

And never, ever, bring an untested egg strada to a pot-luck brunch. 

I read a poem during the Memorial Service that I loved. It is Memorial Day so I thought I would share:

I’m so Glad You Came by Jane Peterson

I’m so glad you came
For I will always know your light
In my hand;
Always
And the power of your leaving was exquisite
A kind of profound silence
I will always recall it
In a moment;
Always
But I am so glad you came.
So incredibly honored
To have known you at all.
I will always know your light
In my hand,
And in a blink, I will see it,
Always

Happy Memorial Day.

To your safe place

Relevant

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I have to be perfectly honest with you…..

I have been struggling to write. I have sat down two times with an idea for a post and abandoned both of them. 

That’s not like me. I have something to say. I say it. But last couple post have felt like cold oatmeal…..a great idea when it’s hot but if you let it sit too long…..

I have had a time finding my message, my voice. 

A couple days ago I spoke to my good friend Miss H. My friend is moving to Omaha which upsets me greatly. I have been in denial about this move and will continue to be for a very long time. Miss H. and I only see each other a couple times a year but our bond is very close…..I secretly always want to make out with her. And I don’t know WHY….but I do….I think it’s the cute Minnesota accent….and a mean tater-tot hot dish. 

Ten years ago our life was on the same trajectory. She was newly married, I was engaged. We both got pregnant with our first kiddos around the same time. Her son Jackson and my son Jack were born a couple weeks of each other….

And then our paths changed quite dramatically. 

And we are still great friends….kind of like war buddies now who look at each and give a knowing smile. These ten years have been quite a journey. 

Miss H now has three beautiful muchkins…..and is moving to Omaha. Have I mentioned this yet???? Our conversation the other day was eye opening. I was driving to work. She was getting a household ready for school; one child was happy, one child was sad, one wouldn’t put his shoes on. The house is on the market, the move date is set……things are a tad nutty for Miss H. 

And then my lovely friend says, “But how are you?” 

And I know she means it. She really wants to know….because it’s almost Mother’s Day….the evil holiday of all holidays, and it’s Spring and all of of these crazy anniversaries around my kiddos are coming up…..

 And I say, “I’m okay, I think I’m okay. This stuff is coming up again but we’re okay.” 

Because really, we are. I think what I struggle with the most is how to remain relevant. 

Children make you relevant. Samantha gave me a purpose everyday. 

Everyday there is a call to action; lunches must be made, children must be dressed, projects must be finished….and that’s just the typical stuff! Forget bullying, sexting, twerking, peanut allergies and GMO’s. It’s a crazy world out there. 

“Really,” I said. “I might be kind of boring.” 

“Boring would be okay with me,” she said. And then I heard a crash on the phone. 

And I know boring would be okay with her. Especially with everything she has going on….the Holidome on I-70 with a Corona…that would be fine. And I wish boring and quiet for her. 

I, in the meantime was sipping a Starbucks and listening to NPR…..shhhhhh. 

My work now is quieter and I am truly proud of the work we are doing, very proud in fact. But it does not demand attention at 4:00 in the morning, it does not throw up in the hamper, or eat out of dog bowl. The best I can do is a husband who clogs the toilet. 

And so I did tell her that story….my toilet clogging husband.  And got the appropriate eeeewwwwww.…out of her. 

This is still our new life. As we evolve and grow into it…..what will my message be? 

That I need a ticket to Omaha! 

Jane, get me off this crazy thing……called love

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Once upon a time, a long time ago, I lived in a mystical part of Germany called Garmisch Partenkirchen. 

Seriously, it was a real place. So real I wikipedia’d it and put a link to it so you could check it out. It is pretty cool. 

I was a ski instructor there which was also the definition of cool. Did you know Ski Instructor was ranked as one of the sexiest professions? 

I was never a sexy Ski Instructor. 

I taught kids. One time I was riding with a little Tike on the T-Bar (T-Bar’s are very European). I held him in front of me between my skis because he was too light for the T-Bar. The little bugger pee’d on me as we were riding up the hill. 

Gore-Tex is water resistant but not water proof. Trust me. 

It was the time before wireless, it was the time before internet, before the DVD. But alas, not before the beloved VHS tape. 

We had two movies on tape. 

Much Ado About Nothing 

and the noteworthy, award winning….So I Married an Axe Murderer. 

I have seen So I Married an Axe Murderer 112 times. 

I kid you not. 

And I still love it so. 

And can quote it by heart. 

WOMAN! 

Wo……Man

WOOOOOOO MAN! 

She was a thief 

You gotta belief

She stole my heart and my cat! 



Betty! 

Wilma! 

Josie and those hot pussy cats! 

They made me horny! 

Saturday morning! 

I want to be Betty’s Barney! 

Jane, get me off this crazy thing….called love….

Yep, that’s right. 3 years in Europe and all I can recite is ‘So I Married an Axe Murderer’

Parents are proud. 

I also made priceless friends who have gathered for me timelessly….who will appreciate the quoting of ‘So I Married an Axe Murderer’….

Who held me in their arms, celebrated my successes, who cried for me, cheered for me. Loved me as we all evolved from pee-stained ski instructors to who we are today.

One of them got engaged this weekend. 

In my search for resilient, happy people she is kind of on the top….brave, honest and a good friend…. a ‘I will raid Trader Joe’s for the best care package for you’ Good Friend

It’s fun to be happy for the happy. We should do so more often. 

To Love. 

And I got you a wedding present…..its a Juice Tiger….I juice everything now. 

Resiliency is not a Super Power

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I recently submitted an essay on resiliency….and here it is. 

Super heroes can turn invisible on whim.

They can circle the earth and turn back time.
They can fly.

There is no super power for being resilient.  I’m not even sure what that would look like….

‘Resilient Girl, able to surmount horrible life tragedies and still find happiness in life!’

There is no super power for resiliency because it exists in all of us; the ability to choose to find some shred of good in case of extreme loss and grief, to be honest and true about our feelings but to not let those tragic experiences dictate who we are and our quest for joy.

People call me strong and I never know quite what to say. I don’t feel strong. I know what in my life makes me feel good and capable and what makes me feel sad. I try, when I am able, to embrace the good.

There are studies that say that resilient people have a brain that is wired differently in order overcome aversion. I’m not crazy about that study- I think it implies in order to be resilient; you have to have a different brain. We are all resilient; we just have to believe that we are strong enough to overcome what has been put before us. Not to forget, not to dismiss, but to find a way to find joy.

My husband and I lost our daughter Samantha, when she was four years old.

Samantha was sick. She was rushed to the hospital at 6 months old. After that time, we became frequent visitors. She was diagnosed with a cellular disease called a mitochondrial disease. Mitochondria produce the energy that enables a cell to work, thrive and pass energy to other cells. If it does not do its job properly, the brain, heart, liver, kidney and other vital organs are compromised.

Samantha was amazing. The most fulfilling thing I have ever done with my life was and will always be being her mom.

But I lost her.

The crazy thing about death is that there is no turning it around. You can’t fix it- Superman can’t race around the world backwards and fix everything. It is done.

And it leaves the rest of us to figure out how to live.

People say the loss of a child is the most-painful type of grief anyone can experience. This is not-so-fabulous news when you are in the clutches of this pain.  I did not feel sad or lost; those are emotions that can be translated into words. There were no words for the raw depth of feeling and the confusion I felt .….my emotional barometer would change from hour to hour. I was fine at 10:00 and emotionally wrecked at noon.

But I still had to figure out how to live.

It was not super human strength that got me out of bed after we lost her. It was not super human strength that forced me to take a shower. It was the fact that I was kind of stinky, the sun was out, the birds were singing and that I was more than this tragedy. Samantha was more than this tragedy. Life is short but I have to live many years without her.

And I could not live under the covers.

And so I got up.

At times I fell and did not get up for a while. But I did get up.

And this is why resiliency is not a super power; it is slow, it is deliberate, it is two steps forward and one step back. It is not circling the earth three times to fix a tragedy. It is a decision to be more than a tragedy….and sometimes it is just the need to take a shower.

When Samantha died, we started a Memorial Fund. Months later, I looked at the money collected from generous people who loved her and felt so overwhelmed.

What do we do with this?  

How can this money make a difference?

With the money, we started a non-profit that helps other children and their families living with the same Mitochondrial Disease. It is a complex, complicated disease that involves many specialists, support, and a very dedicated team. When we got our diagnosis, I asked our geneticists who I could reach out to for support, there were not a lot of options and I felt horribly alone.

With our non-profit, I hope that people don’t feel quite as alone. What is ironic is that by directing this non-profit, I don’t feel quite as alone. I had to do something. To move forward in life with nothing to honor who she was and the beauty she brought for a short time seemed so isolating. In helping our other families, I feel closer to my girl.

‘You are so strong’, people say. But I am not. I am a person, a mom, a wife, a human being who still has a lot of life to live. Besides, tights and a super cape never looked good on me. 

Peace

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“Eating with the fullest pleasure- pleasure, pleasure, that is, that does not depend on ignorance- is perhaps the profoundest enactment of our connection with the world. In this pleasure we experience our dependence and our gratitude, for we are living in a mystery, from creature we did no make and powers we cannot comprehend” 

-Wendall Barry

Last night I dined with these lovely people-                                                                                                                                                                                              

Aren’t they quite fabulous? The Wendall Barry quote was read before we ate, before we ate porcini risotto, green salad with beets, blood oranges and contemplated the powers we cannot comprehend. 

And I felt so peaceful, I could have licked contentment from a spoon.

It was ironic I felt this way, so at peace.  Hubs and I had spent the day at Hospice in Cheyenne, saying goodbye to Cynde’s Mom, Mary. It’s funny, coming into families from divorces and remarriages …..Mary always made us feel welcome and loved. As a 12 year old trying to figure out where I fit in the world- this was pretty great. 

Mary also told Dad and Cynde not to worry about my lack of cleaning my room as a teenager….which I always appreciated 🙂 

Mary passed this morning, 9 years to the day of when her husband Dale died. Coincidence? Nah. Lovely? Absolutely.

We are living in a mystery…..states Wendall Barry

Hospice centers amaze me. A place full of living people helping dying people move onto the next place….and helping us living accept the fact that we are still living and must stay here….and maybe try 
to be happy. 

What an amazing concept. 

It felt very peaceful yesterday. Everyone knew this was the right place, the right time and Mary was ready to go on. Yesterday, I kissed Mary goodbye and told her to tell my girl hello. 

To experience this in one hour and then feast on good food, with good people and a three year old who insists on dressing Hubs in a hard hat and a mustache, the next….what a movement of who we are as people….and the joy, sadness, acceptance, love, gratitude, we can experience in one day

….how dynamic life is. 


“Peace. It does not mean to be in a place where there is no noise, trouble or hard work. It means to be in the midst of those things and still be calm in your heart” unknown. 

Rest in peace, Mary.

And for us left here….life will always be sad, hard, confrontational, unexpected. But risotto, beet salad and lovely friends make a good, unforgettable evening

…we are who we are through our connections. 

And a goatee. 

 


“I grow old … I grow old … I shall wear the bottoms of my trousers rolled.” T.S. Eliot

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Thank you T.S. Eliot.

I don’t know quite what this means because last time I checked, the boyfriend jeans need to be worn rolled with a peep-toe pump.

And yet alas, I have been greeted with suggestions that I am from another era.

The first was the news that Captain and Tennille were getting divorced. Is it THE Captain? Or just Captain? No matter, they were part the cheeky 1970’s songs that still haunt my childhood. ‘Do that to Me one more Time’?

 At eight I thought What? What are they doing one more time?

No one ever gave me answer. Stupid eight tracks.

More disturbing than their divorce is the fact that the Captain never, ever, EVER….

Owned a boat…

Really? Is my whole childhood a sham with a bad mustache? What is a  Captain of if he doesn’t have a boat?

On Friday I went to work armed with this scandalous knowledge. And I went to a meeting. And while everyone was mingling in…..you know that mingling time when you talk about random things…..I mentioned, “Did you all know Captain and Tennille are getting divorced???”

Silence….I have my audience.

“AND!”  I kept going…. “The CAPTIAN never owned a boat??? I mean really? What is he the Captain of RIGHT???” I leaned back in my chair and waited for the gasp….

My team stared at me. I took another sip of coffee.

“Heather, who is the Captain and Tennille?” One brave Marketing Assistant said.

“Really?” No! And I burst out into “Love! Love will keep us together!”

Nothing.

“Muskrat Love?”

Nada.

Hmm…..and I went on with my meeting.

Last night I drug Hubs to a Natalie Merchant concert. 

My twenties can be defined by Grunge Rock, Indigo Girls and Natalie Merchant. In 1992, she sang “These Are Days”…..and I knew they were, because I was 20 something and invincible….and. I thanked her for proclaiming it.

Last night, Natalie came out in a black dress and a shawl.

Looking…her age.

Well maybe a bit older.

She is 50 and I know several hip 50’s chicks….who don’t rock it out in a shawl. Hubs fell asleep during the first half.

Where is my Peace Train? My 10,000 Maniacs? Where is These are the Days? Why the heck did the Captain never own a boat??!!!

As I have gotten older, so has my tribe. And I have had to adapt to that in surprising circumstances.  

Hubs loves The Who, and we go every time they tour just in case this is the last time they tour. 

Roger Daltrey has had some crazy hernia operation…..I KNOW this because he takes off his shirt at every concert….and I think…Wow, he’s buff for an old guy but that is a nasty scar.  

Roger was born in 1944. He will be 70 this year. Good Golly. You rock that scar Roger….rock it.

In my dotage, My nieces told me I can no longer use the words “TOTES” in place of totally…..even though I just found out that if I used TOTES everyday instead of Totally, it would save me 26.7 seconds.

That is cray cray…..which is crazy….which I Totes don’t understand because it’s longer than crazy…

I have also been told I can no longer use Cray Cray…..I am Totes disappointed.

And so….life moves on. These Are Still the Days, but maybe with a shawl and hernia operation.

And Love? Love will keep us together…

Totes. 

Chicken Carcass

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It is a new year.

And I have made resolutions….to be more present, to write more, to determine what path will truly make me content, to do push ups……

And to stick to a budget.

I KNOW! Holy heck…..a budget.

And those who know me are gwaffing at the last resolution. 

I am not a saver. 

I am a spender. 

And I LOVE to be the ‘I GOT IT’ girl. You know…..the drinks come to the table and you whip out the Visa and say “Oh no, I got it.”

LOVE TO BE THAT GIRL. And I do it well.

And I married a Saver.

And last month we determined if we want that lovely yet modest home in mountains….perhaps I need to be less of the IT girl.

Poop. …I love being the it girl.

But I tackled a budget and in an effort to save money I tackled the pantry, the refrigerator and the freezer. 

Because I like to collect groceries, like I collect clothes and I collect bags….. Maybe it’s my fear of the zombie apocalypse….

The world is coming to an end but we have tuffle oil and Manchego!!!!

Really….we could still feed that small village in our house of two.

Tonight I came home, assessed the freezer, yanked out what I thought was pulled pork, put it in a pot and proceeded to make dinner.

Hubs came home, looked in the pot and said, “What’s for dinner?”

“I think I’m making pulled pork.”

He eyed the pot suspiciously. Because it did not look like pulled pork, it did not smell like pulled pork…

It smelled like chicken.  

I have a habit of collecting and freezing chicken parts in the hope that I will put the chicken parts together to make a lovely chicken stock for an amazing chicken soup. ….but at one point this year…before the budget, Hubs looked in the freezer and said, ‘it is a frozen chicken graveyard in this freezer.”

And so tonight, in the effort to determine what was in the freezer, I accidentally made chicken carcass for dinner.

Our chicky ended up in the garbage…which I do realize is a poor Memorial for something that has spent so much time in our household.

Dinner did finally include a lovely brisket with sautéed spinach.

How does this bode for 2014? It really doesn’t BUT: 
  • If it smells like a frozen chicken, it probably is a frozen chicken.
  •  When in doubt, throw it out
  • I don’t want to label people. But maybe I should label my chickens
  • I might not be the IT girl, but you can join me for some soup J
  • A clean freezer is less fowl
To 2014 

2014 is Calling

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It is a new year. 

I still hate push ups. 

It took me three weeks to feel normal after the flu. 

Christmas has come and gone and I now have only 11 ½ months to make this year extraordinary.

So far it is off to a good start. Did you know our work was mentioned in Denver’s Magazine 5280? You can find it here: http://www.5280.com/magazine/2013/12/cell-service
The North American Mitochondrial Disease Consortium? 

Only possible with money from Summits for Samantha. And the article came out on December 31st…..and I thought well, this is a good way to start the year.

So it begins. 

If you live in Colorado you know that marijuana is now legal. This happened on January 1, 2014. And if you don’t live in Colorado, I can tell you, for us Average Joe’s nothing has really changed. The mountain air stills smells of pine, not pot. And I have yet to use the phase Are you completely stoned??!!! With a co-worker, buddy or hubs….although now that I mention it, I might have to….just cuz.

I have finally watched Downton Abbey and realized it is not Downtown Abbey. Ah….the things I learn in 2014.

I have jumped on the Denver Broncos Bandwagon. I am not a huge football fan but I have decided that Peyton Manning is quite impressive. And for NOT being a huge football fan, I like watching him play. I’ve even started running around the office yelling ‘hurry hurry’!  Sadly, it hasn’t had the same effect…..chalk it up to another lesson of 2014.

I traveled last week to DC. I haven’t been on the road in months and love to going to DC. No matter what is going on in the government, visiting DC still makes me feel hopeful. I had an extra two hours before my plane and found myself…..

At the Holocaust Museum.

I have been wanting to go for a while….well wanting is not the right word. I have been intrigued about how one memorializes something so horrific….how such a tragedy can be explained, contained in a building, captured into four walls. And as my own search for resiliency continues, I am intrigued by those who have found it in the past.

I stood in line. A volunteer asked where I was from.

“Colorado,” I said.

“Well, that’s a long way away.”

“Yes,” I paused and cleared my throat. “I’m kind of scared to go in. I don’t know what to expect.”

“Well, it’s not an easy thing to talk about is it?”

“No, but it’s important.” 

And so I put on my 2014 big girl pants and went through the exhibit.

I have tried to put into words what I thought about the museum and I find it hard without sounding trite. Two images stay in my head…..the tiny train car used to transport people to the camps and the tiny Danish boat used to help people escape to Sweden…..a transport of despair and a transport of hope.

As I made my way to the end, there were stories of survivors, stories of resiliency, amazing, sad, hopeful, terrifying stories. And I thought, how did these survivors go on? How did they live a life after all of the death?

All I could draw on was our own experience, which pales in comparison but it was all I had. And I thought of the beauty we find in simple things; a sunrise, a sunset…..and the importance of having a voice and carrying on the story. The beauty, tragedy and irony of life continuing on.

And so hello 2014. 365 days….what will be taught, what lessons do you have to give? The first 12 have been…life….thoughtful, trivial, draining, enriching….life

I still do hate push-ups. 

The Rise and Fall of a Boot Camp Queen:

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I am not in the picture above. 

Because I hate push-ups. 

BUT….I signed up for Boot Camp. 


It was only three weeks. 

I have never taken a Boot Camp class before and quite honestly it scared me; all those push-ups, burpies and mountain climbers. But this class was only three weeks and I thought I could do anything for three weeks.

And I LOVED it! LOVED IT!

And quite honestly, I rocked it. I wasn’t the best one but I was kinda in the B+ range and I always like it when I’m above average.

I still can’t do push-ups….darn you push ups.

At the end of the class we all got in a circle and did a HOOYAH! I HOOYAH’ed all filled with my sweaty, stinky awesomeness.

On Sunday (after an awesome Boot Camp swim) I met my family to see my beautiful niece perform in the Nutcracker.

“You sound sick,” my mom said.

“Nah, it’s just a tickle.”

IT WAS THE TICKLE FROM HELL!

 By 9:00, I was coughing up a storm and checked myself into the guest bedroom.

Monday morning, I knew I would not partake in Boot Camp awesomeness, or work, or anything productive. I was coughy, feverish, sneezy, and the body that felt so strong and capable on Sunday, could barely make it to the couch.

Poop.

I was sick.

I think of Samantha all of the time but it’s times when I’m sick that I think about how she felt….how it was to feel sick….a lot.

The last time I thought about this was on a United Commuter plane to Minnesota with a raging Urinary Tract Infection.

There is only one bathroom on a United Commuter Plane….and it is very small. And it was muy ocupado on that flight.

By me.

I got off the plane and b-lined it to the information desk to ask for the nearest Urgent Care Center.
TMI, right?

But the whole time I talked to Samantha….Oh Sweet Girl…I am so sorry you had these horrible infections. If you can help Mommy get to her rental car without passing out, she would be most grateful

And she helped. And I did not pass out. And antibiotics are a wonderful thing.

Yesterday, I crawled to the couch and pulled up the covers and thought of my girl. I felt sooooo weak. So devoid of energy and I wondered if was remotely what our Mito friends feel. 

I also realized I was stinky.

So I mustered up my strength to take a shower. Mind you shower only. I was so tired there was no shaving of legs, no shampooing of hair, conditioner was OUT of the question. If this continued, I would have to be the Christmas Yeti.

Hubs reminded me that there is no Christmas Yeti.

Darn it.

There should be a Christmas Yeti.

As I snoozed for another hour, I thought of those I know and love with energy diseases. I KNEW when Samantha was low on energy, I could see it in her eyes, her complexion. And those days, she just wanted to cuddle.

And I know adults who struggle with this disease. I thought of Olivia Sue, one of our adults with mito….and kids…..and she posts pictures on Facebook of the tree she decorated while on oxygen wearing her Santa hat, make up and looking beautiful. Because, energy or not, life goes on and a tree needs to be decorated…. God Bless her.

I did not decorate the tree wearing a Santa hat. I don’t think I own a Santa hat. But I might need one now.
I can pretend to know what my Girl went through.

But I don’t know.

And it’s not until I get sick that I can at least appreciate that I do not know what my Girl went through, or what Olivia Sue goes through as she decorates the tree, or how our other beloved mito kiddos and adults go through. Being sucked of your energy sucks.

So, I missed my last week of Boot Camp. But tonight I can get off the couch without cursing the Gods of Influenza……well maybe I give a tiny curse.

And I am reminded once again of what the incredible people we help are up against….to those, I cannot pretend to know what your day is like. But you are braver, stronger and much more persistent than I am…you are a bazillion burpies and two bazillion push-ups in one. And not the knees-on-the-floor push-ups….the real ones.  

HOOYAH.