Because Nothing Rhymes with Teen

I take issue with this whole decade- the entire ten years. 

Because nothing rhymes with Teen. 

Except keen and mean and bean. 

How am I supposed to find a meaningful mantra based on those words? 

For instance, I am about to turn 44. My 44 mantra is “44! Shut the front door!” 

Because 44 is on the verge of being an adult which is unbelievable to me. How could I possibly be an adult. Hence my surprise…..“Shut the front door!” 

And it’s cute, because it rhymes, or maybe it’s not cute but it’s my thing. 

43 was “43, what am I supposed to be?” 

I am still looking to answer that question so if you know and would like to fill me in, that would be great. 

But 2015? “2015 is gonna be keen!” 

No. 

“No one should be mean during 2015.” 

Nah. 

And this goes on for a whole decade! No wonder I have felt out of sorts; looking for answers, cleansing, meditating, wandering, searching….I have no yearly mantra. 

Christmas, New Years and my Birthday; they all come within three weeks of each other; leaving me with a holiday hang-over. I have told my parents they should have considered better family planning to make me a content, well rounded, holiday-balanced person. 

This falls upon deaf ears. 

2015 is gonna be keen! 

We opened the door on 2014, let the old year out and the new year in. We do this every year- leave the front door open for a couple minutes to allow the changing of the guards.  This year it was really a good thing, we were in a condo with three sweaty boys, we needed a little fresh air. 

365 days is a long time- a lot of living happens in those days; we grieve, we laugh, we fall in love, we give birth, people die, we say hello, we say goodbye. We live. 

I was in yoga the other day. It’s hot yoga and I sweat like a man. At the end of the class, our teacher gives us a cold cloth soaked in lavender water.  I love this part of class and I wait for that cool cloth like a monkey waits for a banana, love that part of class. Everything is gonna be alright, I have a cool lavender cloth to make me smell good and mop up my man sweat . 

It is at this time, after I’m all stretchy and stinky, that our teacher says something profound. This week it was about the new year….If we knew everything that was going to happen, we wouldn’t need to experience it. There would be nothing to learn, explore, or gain. So often it is the surprises of the moments and hours, the unexpected twists and turns that give our lives meaning to our journey and make our lessons come alive. 

The New Year comes in all fresh and clean, like that lavender cloth on our tired heads. But who we are is not made up in the sum of 365 days- it is moment by moment, hours, laughs, tears, turns that we forget and turns that forever impact our lives. 

And with some research, I did find my mantra. It is unassuming and leaves no expectations. In fact, it speaks nothing but the truth. 

2015, I do love my caffeine. 

To a new year. 

Your Life is Sad

Guess which week kicked me in the hiney and then turned around, laughed and offered me a poopy sandwich? 

Yeah, this last one. 

You might have noticed it in my facebook posts on Tuesday;  my requests for prayers, thoughts, love,  good juju…..

And the same request on Wednesday. 

Friday.

Sunday. 

You can unfriend me, really. Last week was a big dose of reality pie. 

Without the Cool Whip. 

That was my second food analogy. I might need a snack. 

On Thursday, work friends and I piled into a car a drove to lunch. I monopolized the conversation with the following: 

– My lovely friend with Stage 4 breast cancer in the ICU fighting with cancer for every breath

– My lovely friend, Maria with her son in the ICU

– New friends who have moved to Colorado because they have lost two mito children in the last 6 months. Their third child, also with mito needs a medical marijuana called “Charlotte’s Web” to control her seizures. They lived in Georgia and are moving here to get the medication their daughter needs that is illegal in their home state. 

This is what I post on Facebook! 

Because it is my life.

We got out of the car and a friend declared she was not riding with us on the way home. 

Because these stories are sad. Heck- these stories are frickin’ devastating. And I tell them like I’m ordering a sandwich. 

Huh, another food reference. 

And I thought. ‘Am I that sad? Is my life that sad? Am I immune to what makes the normal person sad?’ Have I become a crab with a hard shell, beady eyes and a threatening claw? 

Perhaps…… I really like crab. 

Here is what I realized in the last week….You can have sad circumstances- you can have ass-tastic, my-god-is-this-my-life circumstance but that does not make you a sad person and that does not give you a sad life. 

On the contrary. 

It’s the point when you know the charade is over, you have nothing to hide, your life is so unperfect you have no choice but to call the tribe together- admit your brokenness, admit that you are so terrified by the unfairness of life, that your only choice is to share it. Ask other people to help with the load, the grief, the sadness. 

And the beauty is when they pick up the load and help you carry. And when so many people pick up the load, it is not a load at all, it can fit in your pocket, or maybe a cute handbag. 

I do have a cute handbag.  

We cannot carry our burdens alone. Life abiet amazing, is too hard to go alone. This week was sad and worrisome and beautiful and hopeful

and human. 

Another post about Bath Salts


Aren’t there days you wish you could bathe in? 

Let the scent soak into your skin? 

Someone passes by and says, “Wow, what is that great smell?” 

And you would say, “Oh that was Thursday. It was an amazing day. Doesn’t it smell scrumptious?” 

And as you were typing or doing everyday things, you would catch a whiff and hold your palm to your nose……inhale…..ahh Thursday. Thursday was a good day. 

Today is Thursday. And I am trying to bottle the scent of this great, great day. 

My company gave $150,000 dollars to our Children’s Hospital today. 

Last time I checked, $150,000 was a lot of money. 


Rumor has it, this is one of many gifts

Perhaps today needs to be put into those baths salts I never use…..I would use this one. It feels fabulous….. dare I say giddy?  

My parent company doesn’t live here. They live in Dallas. But they are very involved in Dallas Children’s and heard about the money we raised for the Courage Classic. They decided they should be involved in Children’s Colorado too. 

I think I work for a mighty fine company. And how great is it to say that in a world of corporate angst???? I work for a mighty fine company. 


Here I am with our CEO and his amazing assistant. Both of whom have brought this gift to fruition. 


Here are a couple of us pre-check presentation

And touring the new Multi-Disciplinary Clinic- where a majority of money is going. 

Wait….let me post the check again



That’s a pretty check. That check is a beautiful, beautiful thing. 

So many things have brought this about. Some people say it’s my passion for this place but passion only goes so far. I have been so fortunate to meet so many devoted, giving, generous people along the way. 

And today, to be surrounded by the people I love, the doctors of Children’s, those who loved Samantha, the Leaders of my company…it was a good day. 

My mama put it best tonight-  

What an amazing and humbling chain of events set in motion by one courageous little girl. A truly awe inspiring day at Children’s Hospital

And then she saw two shooting stars and named one Jack and one Samantha…..


Amazed, humbled, extraordinarily grateful. Are there words? No, no words. 

I’m going to draw a big hot bath full of Thursday- hoping this love and gratitude soak into my pores. Hoping next week I can inhale the scent in my palm and think….ahh….Thursday. 

On another note- you members of this crazy tribe…. NONE OF THIS would be possible without you. My cup runneth. I would like to make a bath salt called Crazy Tribe. I would soak in the fabulousness of you all. 

Oh Me. Oh My. Oh Life

I mentioned in my last post that a lot of what we did this summer, we could not have done with Samantha….

Well, we could have organized around Samantha; nurses, Grandparents and the like. But truth be told, some of the things we did this summer, we couldn’t have done with kiddos in tow. 

Which is where we are in our life. 

And thank goodness for those who help us to embrace this choice. 


In July our friends asked us if we would like to hike from Aspen to Crested Butte and back. It’s not a huge hike but it does involve some coordination; mailing of undies and a toothbrush, some work on the quads, And still, at the summit my dogs were barkin’. 

Not a bad view, eh? 


It was also our ten year anniversary. Happy ten years to us! 

I look old. 


And puckered. 

Hubs looks tired. 


But myyyyy goodness. Look at where we are……

The week before,  the world lost Robin Williams which really made me sad. I saw ‘Dead Poets Society’ my senior year in High School and it changed me- seriously. 

I devoured that movie. I went once with friends and then went again alone, just me and my notebook to copy down all of the quotes I loved. 

Here is what I realized….

  • It is dark in a movie theater and hard to write down quotes
  • If I had paid attention in English class, I would have known where to find these quotes
But no matter, I left with Carpe….carpe diem….to seize the day. I loved it. I wanted to learn Latin, get a blazer with a crest, attend boarding school, move to the East Coast and wear plaid. Most importantly, I wanted to make my life extraordinary. 

And so I became an English major and I wrote. I took a creative writing class and told the teacher I couldn’t write anything because nothing had happened to me yet. 

Silly girl.

And so this weekend we hiked in this beauty and I thought, as I seem to do quite often, of our fragile place in this world….and ironically, one quote kept repeating in my head.

‘Oh me, oh my, oh life!’


To be in this place, with Hubs and our great friends. 




‘Oh me, oh my, oh life!’

Hiking with our healthy bodies- which sounds so simple but we know so many whose bodies don’t do what they need to. I sang praises to my feed-a-village thighs. 

‘O me! O Life! Of the the questions of these recurring; of the endless trains of the faithless….of cities filled with the foolish; what good amid these, O me, O life?” 

Answer. That you are here- that life exists….that the powerful play goes on and you may contribute a verse. 

We hiked to Crested Butte, slept, ate a great meal, basked in good company, a beautiful place and hiked back to Aspen. It was a great weekend. A weekend where you just felt happy to be here. 

And honestly? Grateful that we can be happy….
Oh Me, Oh My, Oh Life. 

I am off to find my blazer with a crest. 

Oh and go vote! Contribute your verse. 

Bath Salts

It has been a long, long time since I have visited this page. 

I have thought about this page and what I would like to say but something kept me from saying it. And maybe I know reasons why. 

I do know I have missed this page and thought about putting my words here quite often.

I trained for a half marathon this Fall. This training was significant for me. I have not run in a long event since I got married. I USED to run a lot, which is funny in itself because I am not the svelte, lean runner type. I liken myself more to a Clydesdale……I’m a trotter. 

One Sunday I went for a ten mile training trot. I returned tired and sweaty and decided to take a bath. I SHOULD have taken the cleanse-your-muscles, tough as heck ice bath but I don’t like ice baths. I know they are better for recovery but I didn’t want to recover faster. I preferred a slow, lactic acid inducing recovery brought on by a steaming hot bubble bath and a glass of wine. 

So I did just that. 

When drawing my bath, I pulled out 20 different bath salts and 32 aroma therapy candles. I have bath salts in the shape of Santa Claus, hearts, stars, sea shells and the traditional circles. I smiled because I don’t buy bath salts. These bath salts have been given to me by those who care- those who love me. Those who think I need to take a soak.

Which brings me to two conclusions……

1. You find me stinky- which is very accurate at times. Sometimes, during a workout I think ‘what is that smell????’ and I realize it’s me and I’m foul and that’s just awesome. 

2. You think I should relax more. And I thank you. And I should. We all should. Baths with wine, Santa head bath salts and aroma therapy candles are pretty great. And you do smell great after. And I love that you have given me these lovely gifts of calm. 

You are good friends. And I come to that conclusion quite often…..you’re kind of amazing. And you indulge me with this blog page. 

I haven’t written the last three months for lack of content, on the contrary, Hubs and I have had a great summer and I am so grateful for you all who have made it great.  

I struggle in my posts because so much of what we have done this summer, we could have never done in our previous life with Samantha. 

Is it guilt? Is it moving forward? Is it navigating our new life? I don’t know. I DO know that not an hour goes by that I don’t think of her, not in a sad way, but in a way. She is just as part of my life just as the sun and the moon.

And now I try to incorporate her into our lives like I do the sun and the moon. She is there, she is constant, not always causing attention but sometimes, when she does, it is so vibrant, it causes the entire world to look up in awe.   

So here we are- three months since my last post, four years into our journey, bath salts, 13.2 miles and a good life with an under-current of grief. 

Where do we go from here? Absolutely no idea. But I do smell mighty pretty. 

July

July, you mixed bag of mixed emotions…..You torrential rain storm on a sunny day……

You combination pizza with loaded with yummy extra mushrooms and a side of crap.

You super cute dress, that’s super on sale but only comes in a size two.

Yeah, I’m talkin’ to you July.  You are the scariest emotional roller coaster known to the Schichtel Household. 

And I rode Space Mountain….

Twice.

July starts with the celebration of Jack, which we have become pretty good about. This year we got bone-in pork chops and a great bottle of red. Hubs and I sat around the table, gnawing on a pork chop bone, drinking wine and talking about the life that was Jack.

We are also training during this time, which is good. I can rationalize anything as long as I can ride it out.  

We also hit $50,000 during this time for our Summits for Samantha ride.

Here we are almost at the top of the roller coaster ride….the chains are still clinking, I grip the sidebars a little tighter… and I think wow we are really stinkin high…..and it begins….

Second week of July is the Triple Bypass….120 miles of riding, 3 mountain passes….whoo! whoo! Give me another loop da loop.

Third week is the Courage Classic AND Samantha’s birthday. AND we raised $100,000 AND we had 65 riders AND it really was the best weekend ever. 

It’s the third loop da loop…the one where I am so jacked up I’m laughing hysterically…wondering if I’m  laughing or crying but it really doesn’t matter because I’m strapped in and all you can do is enjoy the ride. 

side note: the pic above is my yin and yang in July. One part of me says I’m Queen of the World! The other part says Don’t throw up…don’t throw up

And it’s a good ride, a fun ride and then there is that dark tunnel.

Why does every roller coaster have a dark tunnel?

And then it stops….with a jerk. Kinda bounces my head back against the seat. And it’s time to get off.

But wait, there is one more ride, one more anniversary, the day we lost Samantha.

And that’s when I decide I’ve have had one corn dog too many, that funnel cake isn’t sitting right….and throw up in the garbage can next to the fun house.

Why do they call it the fun house? It’s not fun. Clowns are not fun. Those creepy mirrored rooms? 

Not. 

Fun.

Oh yes, this says hours of fun…hours and do I deal with those creepy emotional clowns in July? Oh me oh my oh. 

That final loop da’ loop is always going to kick my ass. And it’s good to have a group of friends to curse that stupid roller coaster with….and someone to hold my hair, while I throw up next to the creepy fun house clown.


Adios you crazy July. Until next year. 

Beauty

Beauty:

Last week I forgot my bike shoes on a ridiculously early morning ride with my wonderful friends.

Forgetting bike shoes on a road bike is like forgetting ski boots on skis, cause you’re all strapped in, all fancy like

…that and I drove in in slippers.

There was no riding for me.

Which was bad because I woke up all amp’d to ride and then I couldn’t…..

….and then the stress of the day took its toll

….mito kids were not doing well

I came home and I needed to ride.

My bike shoes greeted me at the door like abandon puppies…were ya’ been? You left us!  

Or that is how I would like to think of them because they are so stinkin’ cute!



Here they are left over right….mixin’ it up.



I rode. Head full, heart heavy.

I rode more, head clear…

I rode more….heart beating too fast to be heavy

I rode more….I could no longer think, only yell back at my legs

My legs are COMPLAINERS!!!!

A butterfly landed on my hand….kinda because I was climbing so slow, the butterfly thought I was a good place to land…like a very slow island. And I studied this delicate, beautiful wonder until a bead of Heather sweat landed on its wings…..

EWWWWWW…

It flew away.

This week was hard. Our special needs community lost a dear boy.

Lost….he died.

It is surreal to me that I am part of a community where children die. But I am, and in an odd way, this reality is what connects us. This unreal, horrible , vulnerable reality connects us.

And the news was sent out. And we all processed it….as mothers, as friends, as warriors. And we cried….

And then we search for the beauty.

I think these Special Needs Moms are amazing; I don’t know if it’s because bad news has been told so often, the good is searched for and then inhaled like oxygen.

Or if the bad has been told so often that every new day is a gift.

Or if magically, they find a way to clear the head and fill the lungs.

No matter. To bike shoes. To a beating heart.  And a sweaty butterfly. 

The Inspirational, Devesational, Heartwarming, Heartbreaking, Mitochondrial Conference

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

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

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!