On Jack’s 10th birthday I decided to bike Flagstaff as tribute to his very short time with me. 

I got 1/4 of a mile on my ride and my chain broke….

Snapped. 

In half. 

The one thing that would make my bike go would make it go no more. 

 I looked at my riding buddies and held my sad chain, my crazy metaphor to my day- broken, stretched, snapped. 

“What will you do now?” asked Maria. It was early, bike shops were closed and I had a big, bag of bad juju to unleash.

“I will go to yoga.” I said with fierce determination and turned and coasted down the hill in my chain-less bike. 

I went to a yoga class I hadn’t been to before. I came in, stressed, sad, mourning and needing an outlet. 

And so my yogi stretched my Psoas. 

Now that doesn’t sound quite right, perhaps a tad naughty….even the name, So-Ass…although your supposed to pronounce it with a lipsy quality to make it sound less naughty…pthsoas….

Regardless, mine is exceeding, excruciatingly, tight. The psoas muscle lives deep in your belly, extends to your spine and down to your femur. It is called your flight-or-flight muscle and when you tense up, it tenses up, tightening like a rope from your belly to your legs. The baby boa constrictor of your muscles.

Well that’s no good. 

So on Jack’s birthday, in a short hour, we worked my flight-or-fight muscle, unleashed some pain that had been living in my belly. 

It ended up being a good day. 

Today I got up early to attend a yoga class, found out that yoga class had moved.…missed the class and then later in the day ended up back in the yoga class I attended on Jack’s birthday with my famous psoas yogi. 

Today I stretched, for the first time since my half iron man, I felt my tight, tired muscles and laughed at my sad Warrior II. The windows were open in the studio because it was so hot and the sun lingered over the Flations. 

“Turn your hips, ground your feet and face the mountains”, our yogi instructed. 

I turned and saw the gold of the Fall on the hills, the setting of sun. I settled into my pose and breathed, Ah yes, here I am

This week is Mitochondrial Awareness Week. And many amazing caregivers will post many amazing things about what they will do for their Mito children and their impacted loved ones…..

I thought of you all today as I turned to the mountains.

I know you are many times in a state of fight or flight. I know your psoas too, is tight and wrapped and tense. And I know, you can’t you visit the cute yogi in Boulder after your chain has become so worn, it has snapped. 

And I know that you wouldn’t trade it for the world. 

But I do hope you can find some time to get into your Warrior II, turn your hips and face the mountains. 

I’m trying to think of a snarky funny way to start this post but I can’t. 

This disease can kiss my ass. 

Last week I met a mom of a beautiful boy who has been horribly and quickly impacted by mitochondrial disease. This mom is 29 and has had some candid end of life discussions surrounding her boy. 

I marvel in her bravery. 

We met and talked about Samantha. And how I have navigated through our loss. 

I never know what to say. So much because I am still navigating

And so much because I want to fix this. I am not serious by nature. I am the fly by the seat of your pants girl….the sleep on it you will feel better tomorrow girl….have a shot it doesn’t matter girl…… 

Ironic that this is the life now lead. 

And I never, ever, ever want anyone to feel this pain. 

Ironic that this is the community I love.  

The next night Hubs and I were watching Stephen Colbert’s interview with Joe Biden. 

Joe….who has embraced his loss as who he is; speaks to families of soldiers, talks of death openly and considers himself lucky. Lucky because he is loved and because he has his community that he loves back. 

Last Thursday was also World Suicide Prevention Day. 

I would be trite not to say that many who have lost a child have wondered if the world were better where their children are. I came across a post last week by a quirky writer who I like very much: 

http://thebloggess.com/2015/09/you-are-home/

And she talks about depression- feeling isolated and not knowing where to turn but that we are all part of a community and to accept this hurt, this pain, is part of being part of this horrible, messy yet lovely community. When I read her blog, I realized that this sense of isolation extends to us who have suffered a great loss. All we can do is find a sense of home. Find those who have the strength to love us and reveal in the joy to love them back.  

This loss is so ungodly real.I cannot fix this. You cannot fix this. But we can find a home together…..and then maybe we are not so isolated. I will even make banana bread.    

I signed up for a half ironman triathlon. 

Don’t hate me. 

But I’m not a Sarah McLachlan fan. 

It’s nothing personal. 

I’m not a fan of sad music. 

I think I was the only one who didn’t like Adele’s “Nevermind I’ll Find Someone Like You.”  

At the end of the song, all I could think of was, You will! You will be fine! You will find someone like me! I’m really not that important! We went to a movie……shared some chicken wings. You’ll be okay.” 

But there is one Sarah song that tends to resonate with me every once in a while-

Hold On

Hold on, hold onto yourself, 
for this is gonna hurt like hell

I thought of this song when we lost our kiddos. Hummed it to myself in multiple PICU’s.  And it reminded me to brace myself, to armor myself for the hardest times of my life. And it helped….Hold on. Hold onto myself. Hold on…don’t dismiss how very much this will hurt. Cause it will hurt….like hell. 

This has been a tough week for our Special Needs community. One Mama lost her Mama to breast cancer. She is the third woman I have known this year to loose her fight to breast cancer. Breast Cancer can suck my big toe. Forgive me but I’m not quite sure how the town can be painted pink every year and so many people still succumb to this disease. 

Hold on, Hold onto yourself

And our Maria has been battling a bad prognosis for Jacob. 

you’ll be strong tomorrow and we will see another day
And we will praise it
And love the light that brings a smile across your face

It is hard at these times to remove myself from our situation and to give perspective from a place other than my own ‘Planet my Baby Died’.

And all I can say to my friends is to Hold On. Having been there- Hold On. Arm Yourself, Brace Yourself. But know, trust, believe, that you will continue to live this life with candid honesty, love, wisdom and gratitude. 

And in the meantime, this world will seem ridiculously trite and petty. 

I have to trust, to believe (selfishly) that you will all be okay- you parents with difficult decisions, you grieving Mamas and Daddys, you grieving daughters, you grieving sons. Because if you’re not, then maybe I’m not. 

And I really do want to be okay. And I want you to be okay to. 

Hold on, Hold onto yourself

And no wonder, no wonder that I don’t like sad songs. 

I heard that you’re settled down, found a girl and you’re married now….

Who the heck cares? I’m trying to hold onto myself.. 

Perhaps my perspective is a bit skewed. 

Yesterday marked the end of our July anniversaries. It is the day we lost our girl- 5 years ago. 

By the time we have hit this day, we have marked Jack’s birthday, Samantha’s birthday, rode 155 miles, raised 6 figures (almost!). The day passes with remembrance and notes from sweet friends (thank you) a good bottle of wine, gratitude for where we are today, and a nap.

To make this day a little more complicated, this summer I signed up for a Half Ironman. 

So Saturday involved a run. 

I like to run like I enjoy being attacked by rabid raccoons or doped up monkeys but I am trying to channel my distaste for running into something zen, to find my inner trot pony. 

Speaking of ponies, I finished my 10 miles on Saturday, went back to my car only to find myself trapped…..by a parade. I somehow parked at the official ending of the Larimer County Fair Parade. 

This is a big deal. And a long parade. 

I called Hubs. 

“I’m done. I would love to come home but I’m stuck behind a parade.” 

“A parade? Is it a long parade?” 

“It’s a slow parade.” 

“Well enjoy. Everyone loves a parade.” 

I walked my tired feet through crowds of horses, people and goats to a park. Ironically it was the park where we held Samantha’s memorial picnic. 

Okay, I got it. 

The park had changed a bit but there was still the great water feature, ladybug monkey bars, and multiple birthday parties. I filled my water bottle and headed over to the stream that runs by the park; a parade official stopped me, “Would you like some tootsie rolls?”

Why yes, I would love a tootsie roll. Tootsie Rolls are after all delicious and I was just chased ten miles by doped up monkeys.  

I sat by the river, soaked my tootsies in the cool water and munched on my tootsie rolls. Huh, did you realize your toes are tootsies and there are also tootsie rolls?? Crazy. 

I thought about this all as I sat by the river. A little blond girl in a cowboy hat and jeans came up. She took off her cowboy boots and sat in the river- hat and jeans and all- made eye contact with me and gave me the best smile. 

And this was right where I should be. 

Walking back to the car, I encountered ten horses wearing birthday hats- of course I did, because that’s what horses do when they have a birthday. 

I got into my car and I thanked my girl……for making me stop, soak my feet in the river, eat a tootsie roll and see the birthday horses in hats. 

In the words of Margo Nickel “Whenever you wear your hat, that day will be special.” 

Miss you Miss.

My mother called a couple months ago….

“I want to tell you something but I don’t want to make you upset,” she said. 

“You know that is not the best way to start a conversation.” 

There was a pause on the other end…..”Jack talked to me last night.”

“Oh,” I said. “How come he tells you things but he never talks to me?”

“He thinks he will upset you.” 

“Well he should try me.” 

“He wants a snowman cake for his birthday.” 

My mom has this crazy way of talking to my kids. She comes back with these off the wall conversations that I have come to accept- and appreciate

And so I thought, Well of course he does! What ten year old doesn’t want a snowman cake for his birthday? Snowman cakes are delicious. That sugary, coconut frosting covering moist, yellow cake goodness? 

“So,” my mom continued cautiously, “I’m going to make him a snowman cake.” 

“Well yeah!” I said. “If I told you I wanted a snowman cake and you didn’t make me one, I would be uuuuppppppssssettttt.” 

And so…..it begins…..with a snowman cake. And I love that Mama is making him one. He is ten and Snowman Cakes, after all, are delicious. 

It is ten years. It is the eve that our lives changed forever. It’s a 48 hour time span that kinda sucks. I find myself looking at the clock, thinking of ten years ago…..I was taking a shower, I was driving to the doctors, I was checking in….I was……I was

Ten years is a heck of a long time. People get married, babies are born, people leave us. 

And ten years is time for healing….I still get sad and find it necessary to reserve time for my grief. 

But I think ten years ago, when my grief was so raw, when I was outrageously angry at the universe and everything it contained……when I felt my sadness could not be contained by my own skin. 

Ten years is a heck of a long time. 

I talked to my mom today. She has all of the ingredients for the snowman cake. 

“You should take a piece of cake and put it in Jack’s tree,” I told her. 

Jacks tree is a tree at my mom’s house that was seriously on it’s last limb ten years ago. They had called an arborist  to take it out. After we lost Jack, it grew one limb of healthy growth….and then another limb, and another. It is now a big honkin’ tree- Jack’s tree.

“Jack’s tree doesn’t want cake.” 

“It most certainly does want cake. Snowman cake is delicious. Why wouldn’t a tree want a delicious slice of snowman cake? ” 

Per Jack’s Mama’s insistence, Jack’s tree will have some snowman cake. 

And so begins 48 hours. Tomorrow, I attend a luncheon at Children’s for high dollar fundraisers. Children’s, a place I didn’t know ten years ago and now a place so ingrained in my soul. 

On July 1st, I will get up early, I will climb Flagstaff. I will feel my heart pumping blood and my lungs taking in oxygen and I will indeed feel a bit barfy…..that last switchback is a killer. 

But I will make it to the top feeling alive. Alive. Alive. Alive. 

Ten years ago July 1st, I did not feel alive at all. 

I drove home today and listened to a song by Wiz Khalifa….that’s right….Wiz Khalifa….I hang with the hip kids….

The song always makes me weepy…..but in a good thoughtful weepy…

It’s been a long day without you my friend
And I’ll tell you all about it when I see you again
It’s been a long way from where we began
And I’ll tell you all about it when I see you again
When I see you again

Happy Ten. 

Last night I sat at the Awards Dinner for the United Mitochondrial Disease Foundation. A woman, a mom was being honored for her work with the UMDF. A couple years ago, her son was diagnosed with Leigh’s Disease, a horrible mitochondrial disease usually found in infancy. 

Doctors diagnosed her son at age 18. He is one of the oldest patients to be diagnosed with Leigh’s- yet another heartbreaking story we hear at the Mitochondrial Conference. She got up and said that people sometimes ask her how she can find the time to be so dedicated to this cause. Her answer was, 

How could she not?

How could she not be so dedicated to a Foundation that is fighting for a cause that is so complex and so devastating? 

And how could she not be involved when the work being done impacts her son? 

This resonates with me, as it always does at the Mito Conference. People thank me for still being involved even after we have lost Samantha and I think, well of course!

Selfishly, it’s one of the only times I get to talk unabashedly about my Sweet Little Miss. And I can use words like seizures, feeding tubes and ketogenic without getting a sympathetic or confused look. And honestly……How can I not?  How can I not? How can I not? 

Today I sat waiting for my plane home. I watched the current update regarding the tragedy in South Carolina. 

The irony, we fought so hard this week for the lives of our most fragile, our medically complex. We fought as a community, took our cause to Washington, we talked, we cried and we laughed. And I tired to soak in as much knowledge from our amazing, committed, doctors- doctors using their amazing intelligence to make lives better. 

People doing such good. 

While the headlines remind us that their are people doing such bad. And social media now reminds us that as these tragedies arise, we can be divided. 

I watched the news and thought, we are not this. 

We are still people doing good, people finding cures, people communing, providing comfort and hope. 

And so how can I not? How can I not? How can I not? 

Ten months and 11 days ago,  I was at Copper Mountain registering for the Courage Classic. It was our sixth year riding, we were approaching $100,000 in team fundraising and it was Samantha’s 8th birthday.

I was a tad emotional

I navigated through registration with my friend and long-time protector, Heather. She had to help me navigate because, as usual at this event, there were tears in my eyes.

We were approached by a friend and TCH employee, Chris Martin, he too seemed a little teary as he handed me a ‘Gears of Courage’ team hat.

“Heather,” he said, “I just wanted to thank you for the generous donation your company has made for the Multi-Disciplinary Clinic. It means so much to us.”

What the? Wait? Who? I looked at the hat and thought, I can’t wear this. It’s not Summits for Samantha 

And I looked up at him, completely confused, “What?”

And so he told me…..about this great clinic in the plans. A clinic where complex kiddos can come, stay the day, see multiple specialists and confer with those specialists; one holistic clinic designed for kids with multi-system issues.

And he told me that the company I worked for had made a significant donation to this clinic.

And I cried.

Because that is what I do.

I knew a donation from ADS was coming but I didn’t know how it would impact Children’s. The fact that they chose to invest in a new clinic that would benefit kiddos like Samantha…..well call me fried and serve me with a biscuit.

In November we toured the site; a site very much in progress. It was very exciting but I couldn’t see it. It was big, and filled with natural light but it was concrete and sheet rock. And I was in a hard hat.

Yesterday, I was invited to the ribbon cutting ceremony for the Multi-Disciplinary Clinic and I SAW it…and I am so very proud.

I was greeted at the door by Dr Collins and Dr VanHove, our Mito docs. Dr. VanHove was giddy. I have never seen him like this….he was bouncing, bouncing on his toes.

“Should we tell her?” he said to Dr. Collins, he did not wait for her reply, “the Mito Clinic will be part of the Multi-Disciplinary Clinic!”

I hugged Dr. Collins at this news and looked at Dr. VanHove……who is Belgium, and a researcher and sometimes opposed to being hugged…..

“I am going to hug you now,” I warned him. And you know what?

He hugged me back.

We walked up to the clinic and were greeted by my beautiful nephews. My nephews call me HeHe….because Heather is hard and maybe I’m more of a HeHe anyway. The youngest signaled to be picked up. And we all made our way to the new clinic.

The clinic is bright, beautiful and BIG. The rooms are big, the halls are big, all to accommodate kiddos in wheelchairs who have a lot of stuff.

And of course…..there are Nays…

At least that’s what horses are to my nephews …..”Nay, HeHe….Nay!”

Yes Love, Nay….because it is all about you and you other little monkeys….and may you never, ever have to be here….

But if anyone ever has to be….

Rooms are 140 Square Feet, again to accommodate kiddos with a lot of ‘stuff’; wheelchairs, suction machines, feeding tubes, feeding pumps, IV stands….. The exam beds move up and down so transitions for non-mobile kiddos are easier.

Provider rooms allow for 24 providers to confer in one area

Telemedicine means that patients  who live outside of Colorado can talk to their local providers with Children’s Specialists

Alliance Data recognition- right by Samantha the Lionhearted 🙂 

Now is a time of magic. Let the universe take your hand and show you things you have never seen before. Now; at last, you’re open and vulnerable enough to begin. Celebrate the magic, the mystery of the unknown. Celebrate the miracles that will certainly come. 

– Melody Beattie; Journey into the Heart

I read this quote today and it could not have come at a better time. Today was our Courage Classic Kickoff for our team Summits for Samantha. 

I should not worry- our team has done GREAT- grown by leaps and bounds. 

But I do worry…..

I worry every year. What if no one shows up? What if no one rides? What if we have asked one too many times for donations? What if last year was our best year? What if we are not able to fund the Mitochondrial Clinic? 

Every year is new, every year is a mystery, every year starts with me feeling a tad vulnerable. 

And yet along with that, every single year is magical in its own way- magical in our friends who support us year after year, magical in the friends we don’t know yet, magical in the fact that every year is different  

It was nice to get a little reminder…..

Today I gave my little nephew a Summits for Samantha t-shirt that reached his ankles. He put it on over his clothes and twirled in between the tables. When he left the party, he told his Grandma, “Samantha wanted me to wear this shirt.” 

He’s three and never met Our Girl…..or maybe he did….the mystery of the unknown. 

This evening I pondered the day while looking over the blackberries at the grocery store- 4 for $5 is not a bad deal! 

“Hello.” a little voice said. 

I looked up and saw my friend Heather’s youngest daughter- Heather with stage four breast cancer, Heather who rode with us three years ago when in remission, Heather who lost her battle to breast cancer in November. 

Her youngest was shopping with her dad- Dad confessed he could not find the granola bars. 

And both seemed happy. And that made me happy. And so I bought those blackberries- because they make me happy too. 

I do not know what is next. I know I can plan. I can ask. I can recruit. But it is still unknown- our success this year is unknown. 

Perhaps by accepting this, I can keep my eyes open and watch for the magic. 

Friday was the International Day of Happiness. 

Happiness…..it’s the Key, right? The Golden Goose, the Pot of Gold at the end of the Rainbow, the elixir. 

I do believe in order to search for happiness, you basic needs must be met; are you fed? Are you clothed? Are you safe? It is then that one can afford to ask, “Am I Happy?” 

Perhaps that is why this day was deemed International. We should all be comfortable enough to ask the questions of happiness. 

I am that comfortable. And I do ask, Am I Happy?

And the answer comes and goes like the tide- as it should. Some days I am happy, some days not so much. Ironically, the more I worry about my state of happiness, the more variable it becomes. 

PBS did an outstanding documentary called ‘This Emotional Life‘, where the focus of what makes us happy, healthy people was questioned. What I got out of this was that we are all tied by our human connections. 

I mentioned this to a friend who answered, ‘Awe, yes. But sometimes it is our human connections that make us unhappy.’ 

Touche’ my friend, touche’. 

And thus, the question of what makes us happy was still left unanswered in my mind. 

The other day, I sat at a restaurant in Boston with good friends. I had a view of the Bay, a good Cabernet and an oyster in hand. 

I was happy. 

We started talking about people who have been in tough circumstances, divorce, bad relationships….and how sometimes that sadness can be worn on the outside. Every story my friends told was prefaced by….“but it was nothing like what you went through Heather.” 

I always appreciate it when people acknowledge our struggle. I do. It validates a big part of our life….it makes it real…..it unearths a tiny ray I often keep hidden in my everyday life. 

And then it came to me while slurping a salty Pemaquid, 

“I think what has helped me is that through everything, everything, is that I always knew I was loved. The very worst times and I knew I was loved…..and that Samantha was loved, and that Hubs was loved. And that got me through the worst- it was love. 

Perhaps International Happiness Day should be called International Love Day. 

But that sounds weird. 

And so I leave you with Cookie Monster

Love. And Cookies. Amen