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I See You Vid a Voo

Last week I caught the Vid…the Rona….the big ol’ assy virus I have been trying to avoid for 2 1/2 years.

I have to admit, I became a bit judgy in those 2.5 years.

Friends would fall to the Vid and I would politely remind them that Vegas is a super spreader city, or that we shouldn’t be asking……thanks for masking!

Me and my four shots made me as cocky as MC Hammer….

Can’t Touch This.

But ya did.

And Vid crawled up in my nose like the creatures from Alien. Seriously, I snotted this little asshat the other day. Not on my watch booger alien. Not here

Its a strange thing when that test strip strikes positive.

Am I the only one of the ladies that feels like I’m taking the 15 minute pregnancy tests?

Who did I breathe with? Crap, I exchanged air with so many.

In my 51 year old dottage, I marched my positive test down to my husband and said, “What did you do to me????”

Seeeee? Just like a pregnancy test.

And he held up his own positive test and said what did you do to meeeeeeee

Crap! In this new universe, men can carry snot aliens too!!!!

And then I thought about my surgery…..my carefully planned surgery. The Rusty replacement, only a week out.

I looked at Hubs, “should I call the surgery center?”

Because I gotta tell you, I didn’t want to call the surgery center. I didn’t want to tell them I was carrying an alien booger baby in my nose. Maybe we can just forget the alien baby?

And Hubs sat back, “Well…….it’s a big surgery. And its a pandemic, and it was a top cause of death for 2021….but you do you.”

Fine. Fine. Fine.

So I called my surgery center. And I did feel a bit dirty.

Heeeeyyyyyy yeah, guess what? I have Covid. Wahhhhhhhaaaat? Its a thing? A rescheduling thing? No. Really? F&ck Fine

I didn’t really say F&ck.

But I wanted to. Turns out Covid can cause blood clots during surgery.

Blood clots are bad.

And then I thought about my life.

And the times that schedules were switched for my girl.

About how we planned, thought, rescheduled, planned again, cursed, and at the end it was okay. .

It was okay- sometimes even better.

Perspective is an amazing gift.

And in four weeks (universe willing) I will be VID free with a brand new knee and none the less worse for the wear.

But it took a while to get here!

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My Arvada Dad!

I have taken on a super fun side gig! I am writing for Neighbors of Northwest Arvada. June brought Father’s Day and a chance to interview my Pops and fellow (new!) Arvada resident.

Content isn’t available online but you can read the text of my interview below.

Happy June!

Happy Father’s Day Neighbors of Northwest Arvada! Did you know that Father’s Day did not become a nationally recognized holiday until 1972? We see you Dads out there; on the bike trails or tossing a ball around.

Good Dads are the best. In honor of the holiday, I took some time to chat with my own Dad and fellow Arvada resident about Fatherhood.

Hi Dad.

Hello Daughter.

You’ve been doing this dad thing for over 50 years, and we think your pretty good at it. As a dad of adult kids, watching your kids have kids, what advice would you give to someone whose brand new to this?  

Enjoy the time- it goes by so quickly. Play with your kids, be the goofy dad. Jump in the pool and be the shark. Wear the tiara for the tea party. When your kids are young, the days can be long, but you blink, and they are off to college. Enjoy the time when they think you’re still pretty cool.

I still think you’re pretty cool. What has been your proudest moment as a father?

Seeing my children grow up to become decent, respectful, talented world contributing people makes my buttons pop.

Well, that’s a pretty nice thing to say about your kiddos. Thanks! We are going to fire up the grill for Father’s Day, what’s the key to grilling a really great ribeye?

Start with a good quality bone-in ribeye. Season only with salt and pepper and have a good grill that allows searing the meat and then finish at a lower temp. Insist on chewing on the bone, it is Father’s Day after all.

Fine, you can gnaw on the bone, because it is your day. Speaking of your day, what is the appropriate gift? No gushy answers like world peace, go big.

A tie.

Really?

No, this is a little gushy, but I really have reached a time in my life where being with my kids and grandkids is always at the top of my wish list. And as my kids have gotten older, they now give us really thoughtful gifts!

That’s it, you’re getting a tie. Dads are known for bad jokes, what’s your best one?

In honor of my grandsons and because we were just talking about grilling, here you go…..Why didn’t Han Solo like his steak? It was Chewie.

That’s terrible. And kind of funny. So, you just moved to Arvada to be closer to family. What’s the best thing about living here?

Well, aside from being closer to all of you, we love that we are so close to the mountains. We can be out hiking and biking in minutes. I have also found a couple pretty good brew pubs and I might just try out goat yoga.

You’re crazy. But I’m glad you’re my dad.

To all our Neighbors of Northwest Arvada dads, granddads and really amazing uncles, we hope you have a fantastic day with family, friends and of course those little munchkins that made you dads. Go play and enjoy the day!

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How Should I Feel????

I found myself at Orange Theory yesterday evening.

My best workouts are somewhat anger enriched.

And last night I needed to sweat out some demons out in my head.

I pounced on the bike and started riding to the music. Orange Theory plays really great, sometimes a tad ragey music.

Blue Monday by Orgy started to play…… it’s an angry song- not a super angry song but it fit my mood…..

And I still find it so hard,

To say what I need to say,

But I’m quite sure that you’ll tell me, just how I should feel today.

Orange Theory has these sayings on the wall, “Sweat Today, Smile Tomorrow.” “You’re only competing against yourself,” “If it does not challenge you, it does not change you.”

And I’m thinking, where is the rage wall? Where is the “I’m working out my inner demons? It’s not sweat, it’s anger juice“, or my favorite saying to work out to when I feel a touch ragey…… “%uck this $hit

Please note, the above is my internal cadence- I don’t run around Orange Theory saying %uck this $hit. But say next time you’re on a run and feeling a little angsty, try it, it really does work.

The song continued to play…

How should I feel?

How do I feel?

The song echoed what I have been feeling all day…..How should I feel.….my heart rate hit a high of 176….I was stinky and dripping anger juice. I think I got a little of this worked out.

Once I dug past the anger, I recognized what was at the core; grief.

I grieve. And perhaps because grief is a companion, I know when it’s here. This morning it sits next to me, sipping coffee and helping me write this all down. This morning it is silent and respectful.

Hello Grief.

I grieve for the families in Texas, for the immense, unfathomable loss. For how these parents now have to navigate life.

I grieve for you and I. For a society and decisions we no longer understand- for government and laws we are willing to accept knowing that the consequences are deadly.

The consequences are deadly.

I grieve for a society that on the darkness nights cannot accept anything less than shame, denial and blame.

I grieve that it all seems completely out of my control. I grieve that for many of us, it’s easier just to say silent.

I have never been good at being silent.

We need to acknowledge the broken- not the shame or the blame but the deeply, broken before it is absolutely unfixable. I don’t care who broke the window. Can we just say that the window is broken?

Let’s start there.

Cause I don’t know where else to start.

In the meantime, I’m going to try and work this shit out in my own head. Apologies in advance to whoever is next to me at sweaty Orange Theory.

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Trauma, Anger, Sadness, and Oh! Happy Mother’s Day!

Ah…..Happy Mother’s Day dear tribe. If you have followed me through the years, you know that Mother’s Day is somewhat problematic for me.

In fact I kinda hate it.

But I am happy to report that (so far) this Mother’s Day has been with love, laughter and sans tears.

For me.

But I think my whole tribe of Mama’s might be somewhat distraught by the goings-on of this last week. Roe v. Wade is a tinder box of emotions and the implications of what could happen in the next month are far reaching and catastrophic for women.

I do not say that lightly.

I have buried two very wanted, very loved babies. I gave birth to a full term stillborn son. I understand that life is really, truly is a miracle; a lovely, messy complex miracle.

After Samantha’s second Flight for Life trip to Children’s, I got an IUD. The thought of having another baby was absolutely terrifying to me.

“But you would be a great mom,” friends and family said.

Heeeeeellllll yeah! I would rock Motherhood. But if you carry an asshole genetic condition like we do, the chances of having another Little like Jack and Samantha is 25%.

1 in 4.

“Those are good odds in Vegas.”

Seriously, someone said that to me. 1 and 4…..after losing two kids, you should go for another because 1 and 4 odds are good in Vegas. I asked said person if they would get on a plane that had a 1 and 4 chance of crashing.

“Maybe not.”

But it wasn’t just the odds of having another medically complex child. It was me. I was a mess. I was traumatized, I was sad, I was angry, and I knew, I knew, I was not in a good place to have another child, or adopt, or foster, or focus on anything else other than healing my traumatized brain.

Trauma makes us do crazy things.

A couple weeks ago, the world watched Will Smith smack Chris Rock. We analyzed, we cancel cultured, we talked, we saidWill has anger issues.”

I made a note of this when I marched into my therapists office a couple weeks ago. “Was that Anger, or was that Violence? I get angry about things in my life but I don’t hit people.”

My lovely therapist pulled out the Anger doll from the movie Inside Out:

“Look at him!” I said, “Nothing about him says healthy Anger! Anger is a red, enflamed man in a tie. THIS is why we hit people, because a movie about all of our emotions says Anger is really bad, out of control, Anger is chaos.

This clearly is not a healthy representation of Anger.

For fun, she pulled out the Sadness Doll from the movie…..

Hmmmmm……I see gender stereotypes here. Poor Sadness, a young woman in her wooly sweater, round glasses and bob haircut. It is easier to console Sadness than confront Anger.

No wonder we fear getting ANGRY about what is going on. No wonder we choose to be quiet and frowny. A recent movie about our emotions says this is what we should be.

I may have given my therapist a complex about the Inside Out Dolls.

What is my point? Lordy, I am all over the place here. My point (and I do have one), is that it is easier to shame, to quick fix (you lost a baby, get another one), to try and solve, to vilify Anger and to succumb to Sadness.

And Trauma? That crazy outlier, just ignore it until it jumps up on stage and smacks you, shame it and then call it Anger.

We can be Angry my friends. We can tell our daughters, our nieces, our friends, our Granddaughters, that Anger is appropriate, healthy and necessary at this time.

Anger is not a man in tie.

Anger is Woman being told how she will live her life.

Oh and yeah, Happy Mother’s Day. I love you tribe. I love you fiercely.

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Connections Beyond Motherhood:

Hello Dear Readers! I now have a fun side gig as the Content Coordinator for a local magazine- here is the latest article around Motherhood. Happy Mother’s Day Lovely Tribe!

Connections Beyond Motherhood: 

Sunday, May 8th marks Mother’s Day, a time when we celebrate the person that has been with us from the very beginning. Flowers, chocolates, brunches, and homemade cards are just some of the ways to honor Mom.  Did you know the first proposal to make Mother’s Day an official national holiday was rejected? In 1908, Congress joked that if there was a national Mother’s Day, we would soon have to celebrate a national Mother’s-in-Law Day, hence the motion never passed. In 1914 however, Woodrow Wilson declared the second Sunday in May as Mother’s Day, a national holiday to honor all mother’s. 

Ironically, the woman who started the campaign to make Mother’s Day an official holiday was arrested in 1923 for disturbing the peace at a candy convention. Nine years after its official inception, she felt Mother’s Day had become entirely too commercialized; focused more on profit than sentiment. 

Two thoughts run through my head at the statement above. I would find it extraordinarily difficult to disturb the peace at a candy convention. I would yell and shout and someone would hand me a piece of chocolate and then I would find it very hard to be angry. 

The second is that this lovely holiday established to honor the first person who held us tight and made sure our tushies were dry is sometimes a little difficult. 

For medical reasons, my husband and I do not have children. We grappled for years around how to ignore this holiday for ourselves but still honor our own mom’s who we happen to be quite fond of. 

I have also watched my Mom’s friends manage crowded restaurants with cranky, hungry children during Mother’s Day. “I would like to go away for Mother’s Day,” said a friend, “I would like my husband to take the children and I will spa with my girlfriends. It will be quiet, civilized and lovely, complete with food that I get to eat while it is still warm. Is that wrong?” 

I told her it was not wrong as long as I was one of those girlfriends. 

I have many friends who are Moms. I watch in awe as they raise beautiful, independent, amazing children. I also have friends who sadly have lost Moms. Recently on a girls’ trip, a friend and I passed a See’s Candy stand in the airport. “My mom loved See’s Candy,” she said with a sigh and teary eyes. 

We left 5 minutes later with a box of chocolates. As Mother’s Day approaches, I am reminded to send my friend a box of See’s , not only to remember her mom but that as we get older, good friends step in where our Mom’s might not be with us. 

Dictionary.com defines motherhood as ‘the state of being a mother,’ they also define it as, ‘having an inherent worthiness, justness or goodness that is obvious or inarguable.’ 

When I told this second definition to my friend and mother of three, she laughed, “Today none of my children find me Just or Good. The only thing that is obvious is how unhappy they are with me.”

Raising the next generation of amazing humans takes a village. My best mentors were adults beyond my parents: coaches, teachers, aunts, uncles and family friends. My friends now are those who talk openly about the challenges to raising kiddos and lean on their tribe. I love it when they lean on me and honestly, it’s a great excuse to see Sing 2 or ride the water slides one more time at Water World. Some of my best days are those when I can be the amazing aunt. 

To the Mom’s, Auntie’s, Grandma’s and friends who show up, Happy Mother’s Day. I have had the amazing opportunity to interview many families through Neighbors of Northwest Arvada and the resonating theme has been a sense of family and a community you can lean into. It takes a village; to you and your village.

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Grow

My nephew is trying out for swim team. Today we practiced our strokes in the pool- I’m not sure who is more excited…..I think I could love being a Swim Aunt.

As we walked towards the locker room, I looked at the signs, Men, Women, Family Dressing Area. “Are you okay to shower and change in the Men’s locker room?”

He rolled his eyes at me, “Hehe, I’m almost ten.”

Sigh….yes, yes you are almost ten.

I did shower and change super-fast so I was out before he was, and I may have stood too close by the Men’s Locker Room door while I waited for him. Hello Crazy Aunt.  

And while ten is shocking and I’m not quite sure how these years past so quickly, I’m okay with ten. I can look at this young person and think, “I can deal with ten. I’m not okay with you going into the locker room alone. But okay, ten.

It’s May and my social media is peppered with beautiful young adults. Adults I knew as babies. Adults who are now going to prom, graduating, getting scholarships, making the world a better place. Your children have grown and I’m not quite sure how that happened.

These photos are so bittersweet.

This clearly was not the path chosen for us. I don’t look at these amazing moments and think that could have been our Littles. But since so many of us were having babies at the same time I do marvel at how 16, 17, 18 years have past before me and how you have created, watered, fed and grown a beautiful (almost) independent person in this time.

Grief is a thief of time. Not just the time that could have been but in the time after. It takes time to just survive, time to rethink, recalibrate a new normal, time to watch that new normal crumble and rebuild again. It takes time to do the work and, in that time, you, my friend, have built a person.

When my grief was young, it needed constant attention. Like a young child, it demanded to be fed, held and coddled. I am happy to report I can now leave my Grief at home for a weekend and it will not destroy the house.

It’s a new time for many of us. I am thrilled to see your amazing kiddos go off into the world. I am grateful that as time has passed, I feel more present in this joy.

This weekend, I watched an interaction with my friend and her 16-year-old daughter: beautiful, sassy, testing the air with her new wings. As she ran off, I turned to my friend and said, “your child is my spirit animal.”

And Nephew, I will watch you and your brothers grow. I might even wait ten feet from the Men’s Locker room door.

Maybe.

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A Little Bit of Jackson:

I can count on one hand the times when I have truly have not understood the plan that God has designed for myself or my Loves. That is not to say there are other times when I have been sad, angry or distraught.  But shattered and unable to make sense, that has been few.

This week has been shattering. And anytime something breaks into a million pieces, we are left behind holding the shards, wondering how the hell to piece something back together. We hurt. And knowing that the people we love are experiencing a hurt a 1,000 times ours, there are no words.

There is no fix. And at times it feels there is not enough strength, grace or patience.

But there has been love. Lots of love. An outpouring waterfall of Love.

I did not know Jackson well. But I love his Mama fiercely. And I love that in this shattered time, she has shared Jackson with the world- amazing, caring, beautiful, talented, humble Jackson.

I have thought of him often. And I have thought of how I would like to carry this lovely soul in my space- my world needs a little bit of Jackson……..

  • When I kiss my Mama: which I intend to do more of
  • When I golf with my dad
  • Heck, even when I golf
  • When I wear blue
  • When someone calls me Ma’am- Jackson made Ma’am a compliment
  • Anytime I pass a Texas Roadhouse
  • When the Aggies play ball (I might even become a fan)
  • Dimples- any dimples, any time
  • When I do anything of service
  • Wrestle with my nephews
  • Dr. Pepper
  • Anytime Russell Wilson makes a touchdown!
  • If I ever give birth to an 11-pound baby (I know this one is a stretch but if it happens, I will think of Jackson)
  • Anytime I am with his Mama.

This list is woefully short, but I know that is temporary. I look forward to adding more Jacksonisms in my life.

I will start with a Dr. Pepper.

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For the Love of Anger

My sweet tribe is suffering an unimaginable loss.

A loss of such magnitude that stories are shared on the news: graphic images coupled with newscasters speaking in high rapid tones to convey the urgency of this magnitude.

With every story shared about this loss, we shake our heads, shed another tear, mumble another f-bomb and wonder how the hell this could happen.

Because this is an unimaginable loss.

I know loss. I have grappled with the injustice in the universe, cursed at God and wondered why me? But this one leaves me a bit speechless and wondering how my sweet tribe will recover.

This one leaves me angry.

More stories are shared. Stories around a driver, stories around a father, stories around a criminal past. And it is so easy to be angry.

I’m a big fan of anger. While others are talking that someone is in a better place, I take the ‘this is f$cking sh!t balls’ approach.

Have I mentioned I’m trying not to curse so much?

Have I also mentioned I’m not doing a very good job at trying not to curse so much?

Where does anger sit in this process?

In my potty-mouth opinion, anger is a pillar to moving through grief.

It must be addressed and it must be felt. The other day I was looking for my Ouiser to slap because my goodness, I really wanted to slap something

*On a side note, if you have not seen Steel Magnolias, go see it now.

My tribe has handled the unimaginable with amazing grace and love.

But I want them to know that when things get angry, we can offer up a Ouiser, hold their hand, sit in the uncomfortable, and perhaps teach them a new curse word.

We are here when things get angry.

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There are not Enough Cookies

I am making cookies tonight for my friend’s dad.

I mix the butter, sugar, flour with a spoon.

In frustration, toss the spoon in the sink and dive in with my fingers. I feel the dough in my hands. Knead, turn, mix, knead, turn, mix

It calms my restless head, my restless heart and my restless hands.

It is messy. I am messy.

My friend sent me a text this morning. An unbelievable, gut-wrenching text. My friend lost her son in a tragic accident.

And therefore my friends dad lost his Grandson. And since my friends dad likes my cookies, I am making cookies.

Because I don’t know what else to do. And it calms my restless head, my restless heart and my restless hands.

It is messy. I am messy.

We never know what to do when we grieve.

Because grief is scary.

Grief is the scariest, most unknown, pitbull of emotions. And while we can surprise our Besties on their 30th birthday with fireball shots and chicken wings, when it comes to Grief, facing our most intimate, primal of emotions, we assume that our Besties want to be alone.

It’s kind of like walking up to that big haunted house with all of your friends and having them say, “I think you got this, right? We’re going to get a pizza.”

We never got this. My dear friend does not got this, nor does her cookie-loving Papa.

As I write this, after making 230 dozen cookies, I can say that today was heartbreaking, devastating, raw, and ridiculously sad.

I got a text from my friend at 6:15 this morning.

And I howled at the moon for the news.

At 6:17 I got a text from another friend.

6:18 another.

And we made a plan.

A plan that no one walks this journey alone no matter how scary that fucking house is or the pitbull of emotions.

I hope we can keep this promise to our friend- that we hold her hand and help her through whatever may pop out.

At the very least, we have cookies.

We love you my friend.

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Delights Day 30- Knowing when to say Goodbye

I get attached to my body parts- as flawed and imperfect as they may be, they are mine and mine alone.

The bone on bone knee to your left? You can call him Rusty.

If you spend any time with me, especially doing anything active like……walking? You notice Rusty, you see Rusty’s troubled past.

I’m a tad hobbled, a little limpy…..lets face it, I walk like penguin. Rusty has aged to about 80. But I am not 80.

Rusty has supported me through years of bump skiing, marathons, hiking, biking and poor decisions. I do love Rusty and our contentious, swollen relationship.

But I can no longer rely on this beautiful knee of mine. A couple weeks ago on a backcountry ski, I had to turn around before I summitted the Banana Bowl. Who turns around before the Banana Bowl?????

Last week in the beautiful powdery trees of Steamboat, Rusty complained, protested and finally decided he had enough. Who leaves the beautiful powdery trees of Steamboat?

Today I sat with my surgeon, wondering what else we could do for Rusty. He words were, “Heather, anything we do for your knee, other than replacing it, is like using duct tape on the Titanic.”

Fine. Fine witty surgeon.

And so I rallied the troops. Called the Hubs and made a plan. Rusty and I will spend the summer together. It will be Rusty’s last hurrah. We will swim and bike, take short limpy walks together. And as the leaves fall from the trees, we will say goodbye.

Rusty will be replaced with something new and shiny- something not of flesh and bone but titanium and plastic. It will serve its purpose but it will never be Rusty- nothing could ever be Rusty. But I am now at the point where that might be okay.

Sometimes making a decision is a delight. A terrifying perhaps painful delight but a delight none the less.

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Delights Day 29: 14 Days With Mary Marguerite

My Mama and my Uncle are transcribing my Great Grandma Burbank’s journals.

Today they sent 1941 and I am intrigued.

Grandma Burbank is my Granny’s Mama- my Granny who just passed this summer.

We grew up with stories about how very, very poor the Burbank side of the family was; squirrel was a good meal, snapping turtle made a good soup, you always did your business outside and electricity was quite bourgeois.

Today I opened the latest pages. I love the first lines from my eloquent Great Grandma B….

Drop a word of cheer and kindness- just a flash and it’s gone but there’s half a hundred ripples circling on and on.

Here are 14 days with Great Grandma B as she tried to feed and clothe seven children. Days were busy and full and no rabbit was safe. Here are some little notes- My Gran is Emma Mae. Bob is my Great Aunt Mary Bob and the rest…..well we’re figuring it out as we go.

January 1, 1941, Wed

Drop a word of cheer and kindness-just a flash, and it is gone-but there’s half a hundred ripples circling on and on and on.  Harry, Ruby, Gene, Roy and I butchered for Mrs. Burbank.  Rained most of day.  She gave us quite bit of meat and some lard.  Stopped at Mary’s on way home.  Ruby and Harry ate supper at Uncle Henry’s.  Owen Montgomery called hunting Jane for a date.  Ha! Ha!  He got her at Uncle Henry’s.  Joe Fritchie called wanting Bob to work and Walter came after her.  Jim and Bob spent night with us.

January 2, 1941, Thurs

Mended some.  Gene cooked head meat.  Harry’s left about 9:30 a.m. for California. Jane didn’t go.  We sure hated to see them go so far.  Gene and Roy went with Don to Newton. Nola and Lilly called to tell Harrys goodbye. Rained in morn but sun shone beautifully in afternoon. Thelma and Irene Crouch brought my lard cans home. Ollie went to L’ville with Ralph.

January 3, 1941, Fri

Washed. Jane, Roy, Ollie and Mavis went to Buck’s 18th birthday party. Bob came home with them from Fritchie’s after party. Turned so cold at night, spit snow and wind blew part of clothes off line.

January 4, 1941, Sat

Boys and Buck went out at night and Buck spent night. Was cold. Violet called and Jane went home with her. Gene and boys cut wood in morn. Gene and Ollie cut awhile in afternoon. Roy caught an opossum. Girls found living room flue platform on fire when they went to bed. Gene and them put it out. Mended most of day and ironed. Gene and boys rung the old sow as they couldn’t keep her in. Boys killed 2 rabbits.

January 5, 1941, Sun

Violet, Esther, and Buck were here for dinner. Went to Sunday School and Christian Endeavor at East Pinkstaff Church.  Walter, Jean and Margarite Fritchie called in evening and went to Christian Endeavor.  Gene spent evening at John’s. Ralph T. went to Hammond. Children walked home with Violet. Dovey Ann had fever at night. Bob went back to Fritchie’s after Christian Endeavor.  Was 10 degrees above zero in morn.

January 6, 1941, Mon

Gene went to L’ville in afternoon with Tiny. Ordered Bob’s and Mavis’ shoes from C.M.O.  Ollie expected to go along, but Mrs. Diver didn’t come. Mended. Harry and Emma May started back to school after holidays.  Roy spent morn at John’s. He and John fixed flue where it had been a fire. Mavis, Harry and Emma May spent evening at Nina’s.

January 7, 1941, Tues

We washed. Roy cut wood at clearing. Gene helped Millard Miller cut wood. Ollie went to L’ville with Tiny. Uncle Vinis’ spent evening here. Roy killed 2 rabbits and 1 squirrel. Gene got pictures taken while surveying from Harold Cramer. Jake Elders’ baby died at 3 a.m. with pneumonia. Nina and girls called.

January 8, 1941, Wed

Mavis and I ironed. Aunt Pearl ate dinner here.  Rev. Roller and Lilly called.  Roy and Ollie cut wood and Gene helped out and buzz wood at a wood cutting for Carter Crouch at Uncle Henry’s woods.  Bob and Mavis got their shoes, but Mavis’ were too small.  Lige Wesley called.  Dovey Ann had fever at night.  Roy had a bad sore throat.  Sent Katherine and Pearl Bowen a letter.  Heard that Minnie Tiffany had pneumonia.

January 9, 1941, Thurs

Leonard Ferriell came after Mavis for Mrs. Tiffany.  Gene, Roy and Ollie cut wood in morn and Gene and Roy in afternoon, Ollie helped Uncle Vinis haul in fodder in afternoon.  Uncle Vinis called.  Ma got a card from Ruby at Amarillo, TX.  Was cloudy + spit snow.  Jake Elder’s baby was buried.  Fritchie’s bro’t Bob home at night.  Gene and Roy killed 1 rabbit.  John began plowing on Harry with tractor.

January 10, 1941, Fri

Sewed on aprons.  Mrs. Tiffany bro’t Mavis home after dinner.  Harry and Emma May were home excused from exams.  Bob and Emma May spent afternoon at Joe Fritchie’s.  Ralph called in morn saying they were going to move to Octaves’ house next week.  Jo Pinkstaff called in evening wanting to rent Ma’s house.  Ollie waited until 2 p.m. for Mrs. Diver but she didn’t come.  Gene and boys hauled 8 loads of wood with Uncle Henry’s team.

January 11, 1941, Sat

Mended all day.  Bob washed her clothes and she and Mavis ironed.  Gene and boys worked in clearing in morn and they and Uncle Vinis got a big mess of fish at Charlie’s in afternoon.  Violet and Jr. called also Adrian Claycomb wanting to rent Ma’s house.  Ma spent afternoon at Aunt Pearl’s.  Bob was sick with flu. Roy and Ollie went to Flat Rock with Uncle Vinis’ at night.  Car killed guinea and Bob cleaned it before she found out it was Lilly’s.  Took it to her.

January 12, 1941, Sun

Was a lovely warm day.  Roy ate dinner with Buck.  Norma and Arlene called in evening.  Hanford Wesley called in afternoon + he, Gene, Ollie, Herbert and Harry went to clearing.  Geo. Millers’ called. Went to Sunday School and Christian Endeavor and preaching at East Pinkstaff.  Bro. Albert gave some very good thoughts on a Christian putting stones in another’s way.  Sharon Borden came for Bob, but she was unable to go to work for them.  Nola brought up popcorn which they popped.  Lee Mitchell called.

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You Never Stop Being Rare

I’ve always enjoyed being a tad unique, marching to the beat of a different drum, channeling my inner Heather.

Today is Rare Disease Day- a globally-coordinated movement focused on rare diseases and the 300 million people impacted globally by these conditions. As much as I’ve liked being my unique person, I wish I didn’t know as much as I know about this day. I wish my genetic makeup, my genomic sequence wasn’t quite so rare.

I wish I didn’t know that 35% of deaths within the first year of life are attributed to a rare disease. I wish I didn’t know the inequality within healthcare, access to care, therapies and social opportunities for those impacted by rare disease.

But I do.

And you can’t change what your life is. We, as a family have become closer by what makes us rare. Our POLG-1 deviation has made us vulnerable, perhaps a tad sweeter to each other, super protective, a village and a tribe.

Would we be different if we were not rare? I don’t know. We can imagine what life would be like without mitochondrial disease but it’s not reality. Reality is our Rare.

And along Rare, you meet the most amazing people. People who fight for your cause just because they love you. People who work tirelessly for a cure. People who wake up everyday with extraordinary hurdles- either those impacted or the caregivers who love them.

Would I trade a Rare Life? Heck yeah. I would love two lippy, stinky teenagers. I would love to have my brother school me on the moguls. Rare is not glamorous. Rare is hard and heartbreaking.

And yet Rare is beautiful and bonding. Rare is raw strength.

Above it all, Rare is who we are. You never stop being Rare. The best we can do is own it, be it, and help other recognize Rare in the world. Happy Rare Disease Day.

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Delight Day 28- Two’s

Yesterday was 2-22-2022.

And if you were in second grade, you were in grade 2 on 2-22-2022.

One of my nephews got to celebrate being in grade 2 yesterday. His school did some special activities unique to the day and his grade. One was ‘what will your life be like at 22 years old?’

This was his response-

Hubs, Pops and I took the Phews skiing the day before and I guess the day stuck. I love everything about where Phew 2 will be at 22. I love that he loves to ski. I love that he will have short hair, big feet and long legs.

Hubs and I formed a life around this crazy Winter sport. We both spent our 20’s bumming around ski resorts, sleeping on couches and watching too many Warren Miller flicks. Even before we met, the foundation of us was embedded in this skiing lifestyle.

And Phew’s Dad? My brother is an amazing skier.

I hope this sticks. I hope the Phews fall in love with these ski days…..not just because it’s a great activity but because selfishly, my most magical days have been spent on a mountain; a great powder day, a terrific summit, the sun dancing between flecks of snow, a day on the mountain with family and friends.

This sport took me around the world. It made me independent. It gave me confidence. It made me strong- it took my breath away.

And a good powder day still makes me giddy and giggly, nom, nom, nom.

Everyone needs something in life that makes them feel this way.

So you go my long legged, big footed, short haired nephew. Teaching you to love this sport is a delight.

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Day 27- Back to Delights

I’ve been thinking about these delights quite a lot lately.

What qualifies as a delight? There are quick shots of delight- they dance on
your tongue like dark chocolate.

And then there are delights that brew in your head. They are not immediate-
it is not instant. Perhaps a process that sooner or later becomes a delight-
a little more lasting, a little more precious- laced with complexity and life.

My latest delight is around a conversation, albeit born out of intense pain,
it is a quiet, coveted delight. I can delight in this honesty and our ability
as a family to touch something that at times seemed untouchable.

Last week I sat with my dad and my Hubs. We stopped in for lunch after
skiing. Conversations evolved from small talk to tough talk.

My dad has a dear friend that just lost a grandson in a horrible accident.
Our collective heart aches for them.

“How is Mr. B?” I asked

“Well, you know. Not good? Okay? Sad? Hanging in there? It’s heartbreaking
knowing the hard days ahead for him and his family. I want to tell him just to
hang on. It can be really awful for a while and I just don’t know how to say
it.”

“I always think of the Sara McLaughlin song…..hold on, hold on to
yourself, cause this
is gonna hurt like hell…”

I grabbed a napkin and held it to my eyes, “it still makes me cry.”

I blew my nose and we all took a long drink of our Mary Jane ale.

And watched the Olympics.

Because you know, when you don’t know what to say……sports…and beer.

And then I broke the silence.

Because ugh……silence.

“But you should tell him something Dad. Seriously. You should tell him that
he is going to be okay. That his family is going to be okay. That sometimes it
feels like you never, ever will. But you need to tell him that you trust, you
know that Mr. B is going to be okay! You telling him that you know he can
survive this…….that trust…… when it seems like the whole world is doubting…..that
trust is everything.”

“I know….I know.”

“Trust is good,” Hubs interjected, “A stiff upper lip can be good too.”

I grabbed Hubs’ hand and squeezed it, “And sometimes you have to tell
yourself that we all grieve in different times, in different spaces and in
different ways. And the only thing you can do is honor everyone’s process,” I
bit Hubs’ finger in thought and angst. “Please tell him you know. You know, he
will be okay.”

We watched the Super G. People missed gates, missed times, racers fell and
for some, the race and the dream they had been planning for a lifetime was
shattered.

It was nothing compared to the shatter we just discussed.

But somehow, we all get up. Maybe we get up because someone on the side
yells and cheers through the noise and tells us they know we can.

Maybe it’s just our shear will and moxie.

But we do it. We get up. And it hurts like hell.

And years later we sit around a pitcher of Mary Jane Ale and chicken nachos.
We dab teary eyes with rough napkins, knowing that we survived.

Is it delightful?

No, it’s not.

But it is peppered with delight, gratitude, moxie and survival.

I’ll take that spicy blend any day.

And to Mr. B and family. We see you you. We grieve your enormous loss. Trust
in this shitty process. We have nachos and beer when you are ready.

 

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The Delight of You in My Life:

I talk often about how much I love you all. The GIFT I absolutely feel in having amazing people in my life. It is a gift. YOU are a delight.

We are older. The fragility of life and our time on this earth has become more relevant. A month after this photo was taken, one of our loves lost their Mama. The importance of these relationships- knowing that we love and are loved, it is a sacred gift.

Today’s Delight is brought to you by my amazing friend JoBeth: aka Jingo, Chippy, Jo-El, and all around amazing person. She is a talented writer, lover of life and someone I have loved and laughed with for 30 years.

I just celebrated her 50th. Today I got this note in the mail about our time together. I think it speaks to so many of us about our cherished relationships- and it is a delight.

Thank you note from Jingo:

My Dear, Dear Friends:

It’s hard to believe it has now been months since you all descended into the Valley of the Sun like rock stars at the start of a tour. There is a part of me that is ashamed and embarrassed at taking so long to write a thank you note, but there is another part of me that has been in denial that we are all back to the realities of our pandemic, adulting lives. Denial looks like this: It took me a week to break down the fancy dinner table that you guys made look like a 5 star restaurant. It took me two weeks to admit that the flowers in the mason jars were finally droopy and brown enough to let go. It took three weeks to take the Coronas out of the Yeti cooler on the patio (because we forgot about them). It took until Thanksgiving to find the last olive from someone’s bloody mary still intact in the deep end of the pool. And much to Eric’s chagrin, the cards you placed strategically for me to find and open are exactly where you left them- in my cupboard, in my cookbook, the the freezer with the beer glasses, and probably some other places I still haven’t discovered.

A friend’s dad used to say that life is like a roll of toilet paper- and while I’m sure there are a shit ton of reasons one could insert here as to why this is, his particular thought was that because the closer you get to the end, the faster is goes. I certainly don’t feel like 50 is the end, but I do feel, with the exception of house projects, that everything seems to be moving quicker than I feel prepared for. While four days with you probably felt like an eternity to my liver, the rest of me felt those days were more life the first seasons of Ted Lasso, over way too soon. I kinda wanna go back and replay them until our next episode begins. Alas, the spin cycle of adulting waits for no fermented air-fiddle player.

As I have finally conceded to reality and decided to scrape the freezer burn off that last card, to see all your names (and your collective nicknames for me), and to feel all the joy you brought to Arizona, I have been focused on how much that time filled me and how lucky I am, not just for the kick-ass celebration but the friendships that made it so. For a person who has hugged her way through life and who finds the greatest highs in belly laughing and just being in close proximity to my people, the prolonged social austerity of a pandemic may have made me physically plump, but spiritually, I was living on fumes. While the long weekend may have picked my innards, it also nourished and oxygenated them and the world around me.

My goddess/god/ genderless sky monkey, what a GIFT it has been to experience you love, support, HUMOR and HUMOR, and your countless gifts for literally and figuratively the better part of my life. And what a gift is was that you all trained, planed and automobiled to the desert to be in-person reminders of how fanfuckingtastic my 50 years on this earth have been. I can’t and don’t want to imagine where or who I would be without all of you. That our incredibly unique and wholly special connection continues and grows even now give me such a feeling of pride and strength. I truly love each and all of you more than I can say. I love your spirits, your talents, your insights and intelligence, again- your HUMOR, your hearts, your voices, your stories, your families, our stories and our family.

Until next time, my mountains-

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Delight Day 25: No You Cannot Go to Orange Theory

I am trying to move more.

Time of Covid, working from home shuffling 20 steps from my bedroom to my study, to sit for hours….

and hours….

Is not healthy. And I know I’m better, I’m clearer, I’m happier when I move. I KNOW that.

Recently the American Heart Association came out with a study around how MUCH time we are sitting in time of COVID….and how bad it is for our heart. Our heart, like any muscle loves some movement. The old saying, ‘let’s get our blood moving?’ Our heart loves that saying.

And you know what? I love my heart.

In the new era of Heather Needs to Move More, I signed up for the Orange Theory Transformation Challenge! 8 weeks! 6 weeks of at least three Orange Theory workouts or more. I’m on TEAM. I have a COACH. It’s everything Moving More Heather needs to get motivated.

This challenge started on Monday and then it snowed like 8 feet in Colorado and became arctic cold. Its the first week of the OTF challenge and I am falling behind already.

Today was my day to get out and redeem myself. But it snowed on the 20. Maybe not really 8 feet but a good 12-15 inches and no one comes to plow the road to our house. This evening I put on my workout gear and started the car only to realize that I’m not going anywhere. Maybe into a ditch….but not anywhere else.

And so I stomped inside only to complain that we live in the boonies and I need to go to Orange Theory because if I don’t, not only will I loose the OTF challenge but my heart will be very sad.

Hubs suggested a walk. I may have flipped him the bird as I put my puffy coat and snowboots on and headed out the door.

I was gone for an hour. I listened to classical music and a couple short podcasts. I returned rosy cheeked and somewhat numb.

And okay yes, fine….I was delighted.

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Delights Day 24: My Pal Cal has a Birthday!

Mitochondrial disease is a horrible diagnosis- it is progressive, heartbreaking and all around just awful.

But in the midst of the awfulness, some amazing people come into your life.

One of these amazing Humans is my friend Calvin. I have known Cal for 15 years. Tomorrow this amazing human turns 17.

If you know Calvin, you know his piercing blue eyes. You know how he holds your hand tight and gazes right at you. You know his brilliant smile and the way he engages with you. You never want to leave his side.

Please help me celebrate Cal’s birthday tomorrow- send him a note or post a note here, I’ll make sure he receives it.

Cal is a delight.

Cal, so many wishes for the very best day and the very best year. To your health and that amazing smile. Keep fighting the good fight my friend.

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Delights Day 23- An Evening Stroll with Junior

This really isn’t Junior and I.

But maybe it’s our alter egos. Junior out on the prairie, we’re riding along having just rescued a calf separated from his mother……The sun setting between his cute little horsey ears.

Today I volunteered my Therapeutic Riding Center as a horse lead. Junior is my very patient horse. We’ve worked together a couple times and I feel like maybe (?) we’re bonding. No matter. I find Junior a delight.

Tonight it was cold. I kept checking the website thinking class might be cancelled. I sighed as I donned my long underwear….it would be nice to just stay inside.

No Heather! Get out of your fleecy pajama bottoms that no one on Zoom ever sees. Put your jeans on and the Carhartt jacket you had to have for ‘the barn’. And get yourself out in elements.

Covid has made me soft.

So, I wrangled myself up, drove in the snow and with much help, saddled up Junior for our class.

As a horse lead, my job is simple…. lead the horse. But Junior’s student today was a spunky four-year-old whose pink cowboy boots barely fit in the stirrups. Her giggle was infectious.

I felt incredibly responsible for them both.

And then the lights went out.

No seriously. The ice caused a driver to spin out of control into a power line. There was a flicker and a pop. The arena went dark. There we were in the evening light; Junior, our pink booted student and me.

The dusky, snowy, reflection from outside provided enough light to play a couple games before it just got too dark. We walked Junior outside and untacked as the final light disappeared. My pink booted student carried off a saddle twice her size.

Snow continued to fall as we blanketed Junior and tucked him in with a bucket of oats.

“Good night Junior. You’re a good boy. Stay warm.”

Tonight, I am back in my fleecy pjs- warm and toasty. I’ve washed my hands several times, but I still smell just a tad……..horsey.

Delightful.

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Delights Day 22- The Story of Grandma B

This is Young Heather with my Hottie Mama, my Gran and my Great Grandma Burbank (aka Grandma B).

Four generations of women who have lead amazingly different lives. I am so proud of these strong women before me who helped pave a path for my own journey. In preserving that sacred journey, I pass Day 22 of Delights onto my Hottie Mama- aka, Mama Judi:

Grandma B’s Journal’s

I spent a very delightful week this month with my brother Rod and ‘Sister’ Jeanine, in Rosharon, Tx.  Rod is transcribing my Grandma B.’s. daily journals.  I went down for a week to help him convert pages of cursive into Word documents.  There are years’ worth of work reflected in the above suitcase.  It is truly a labor of love.  Each month takes 2-4 hours to transcribe.  It was closer to 2 hours with both of us working (Rod reading and me typing.).

Grandma B kept a journal every day of her life until 2 days before she passed in 1983.  We finally have her journals from 1938 to 1983 (except for a few years that burned when their house burned down.)

These are such an incredible, delightful treasure for our family.  Many days show the struggle of farm life in the 1930’s and 1940’s.   No going to the grocery store for most things.  Growing, canning, preserving, hunting or fishing for most of their food.  No electricity, central heating or indoor plumbing. Neighbors and family helping each other and visiting with each other on a regular basis.

For many years, she used a 1-year journal to record 5 years of her life (thus saving paper).  The writing is so tiny that my brother uses an electronic enlarger to read it.  Even then, some days are very difficult to read.

In many instances, she wrote in pencil and the pencil has faded so much that it is almost unreadable but so far Rod has been able to figure it out.

As he finishes each year, he is sharing the Word document with family members so we can all experience the world through my Grandma’s eyes.  She was a pretty amazing person and we learn so much about her life by reading her journals. It is truly a delightful experience and an honor to my Grandma.

Thanks Rod!!!  We love you!!

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Delights Day 21: Dim Sum, Brunch Some

Last weekend I had my first Dim Sum in Chinatown, Chicago. I huddled with my nieces over pots of tea, dumplings, and custard filled desserts shaped like pigs.

Dim Sum is officially defined as a meal of small plates, usually in steamer baskets, served with tea.

Dim Sum is delish.

I dove into Dim Sum. And after I decided that my tummy could fit……. One. More. Dumpling, my dear friend Poling explained Dim Sum to me.

Dim Sum is not just a meal, it’s a meaning.

“Dim, is a dot, or a speck. Sum means heart. Dim Sum is a bit of heart,” she said.

Well, that is a lovely definition for a meal.

“That is amazing and so poetic,” I said. “We just call it brunch.”

I met dear friends for brunch yesterday. The items ordered were a tad different than last week. A flight of mimosa’s replaced a pot of tea. Do beignets counts as little piggies filled with custard?

Shrimp and grits? I don’t know how that would translate to a Dim Sum menu.

But the meaning was the same.

Bit of Heart.

I left both Dim Sum and Brunch full in my belly and full in my heart.

Maybe gathering around a meal with Loves is always a bit of heart.

Happy Dim Sum to you all.

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Delights Day 20- Study Music

I am still working from home 95% of my days.

And while I still find it odd that for two years now, I can get camera ready in about 15 minutes, find a top that is business-casually enough while still being cozy and yoga pants that provide enough, stretch and give to remind me that this is not a cuddly Saturday…..this is in fact a Wednesday. And attention must be paid.

I have found several hidden delights to working from home.

One of them is music.

Today I found a break in my meetings, served up a cuppa tea and cranked up the Pride and Prejudice soundtrack on Spotify.

I’m a crazy cat.

It’s a lovely soundtrack if you are looking for a moment to unwind, sip a little Earl Grey and pretend you are in the English Countryside instead of your office……. which smells oddly of curry.

Delightful.

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Delights Day 19- Always take the Weather with You

Its been cold and snowy here in Colorado.

I love it.

It is Winter. And therefore it should snow. All is right in the world when it’s covered in a blanket of white.

Yesterday it was -1 degrees. Delightful. The cold hit my nose as I inhaled- reminding me I was alive.

Crowded House sings a song, called ‘Always Take the Weather.’ It was released in the 90’s and became a favorite song during my Germany days. Now when the weather gets a tad temperamental, I think of this song…..

Everywhere you go…..always take the weather with you……

But it never really made sense to me…… because weather is something that kind of happens to you. You have no control…..everywhere you go…..

So I looked up the meaning of this song on ‘the Google’. And now I love this song even more…Neil Finn from Crowded House told how this story came about…

We were trying to imagine a time and a place, and the line ‘Walking ’round the room singing Stormy Weather’ helped us get into some atmosphere of somebody troubled who is always on their own in a room. We were trying to find lines that described the scene, like the ‘small boat made of china’, and that feeling of ennui or languishing that permeates the song. Ultimately, the theme of the song is, of course, that you are creating your own weather, you are making your own environment, always.

So tonight is about three delights…..

The Delight of Winter Days

The Delight of a song that brings memories

The Delight that you are making your own environment, always…. everywhere you go.

Walking ’round the room singing Stormy Weather
At Fifty Seven Mount Pleasant Street
Well it’s the same room, but everything’s different
You can fight the sleep, but not the dream

Things ain’t cookin’ in my kitchen
Strange affliction wash over me
Julius Caesar and the Roman Empire
Couldn’t conquer the blue sky

Well, there’s a small boat made of china
It’s going nowhere on the mantelpiece
Well, do I lie like a lounge-room lizard
Or do I sing like a bird released?

Everywhere you go, always take the weather with you
Everywhere you go, always take the weather
Everywhere you go, always take the weather with you
Everywhere you go, always take the weather, the weather with you

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Day 18 Delights- Work brought us Together, Life Made us Friends

Tonight this rowdy crew was kind enough to gather for my birthday. But my birthday didn’t matter…..any time I have a chance to gather with this group is a celebration. I would celebrate national Lost Sock Memorial Day just to be with them

For the record, National Lost Sock Memorial Day is May 9th.

I love these people. I love that I met them all at work and despite career changes, life changes, and many other changes, we all are still dear friends.

Work can be hard. Work can challenge your ego. Work can challenge your friendships.

I love that this picture is peppered with love and respect. Love for who we are as friends and respect for the savvy, talented colleagues I have had the privilege to work with.

Delightful.

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Delight Day 27- Back to Delights

I’ve been thinking about these delights quite a lot lately.

What qualifies as a delight? There are quick shots of delight- they dance on your tongue like dark chocolate.

And then there are delights that brew in your head. They are not immediate- it is not instant. Perhaps a process that sooner or later it becomes a delight- a little more lasting a little more precious- laced with complexity and life.

My latest delight is around a conversation, albeit born out of intense pain, it is a quiet, coveted delight. I can delight in this honesty and our ability as a family to touch something that at times seemed untouchable.

Last week I sat with my dad and my Hubs. We stopped in for lunch after skiing. Conversations evolved from small talk to tough talk.

My dad has a dear friend that just lost a grandson in a horrible accident. Our collective heart aches for them.

“How is Mr. B?” I asked

“Well, you know. Not good? Okay? Sad? Hanging in there? It’s heartbreaking knowing the hard days ahead for him and his family. I want to tell him just to hang on. It can be really awful for a while and I just don’t know how to say it.”

“I always think of the Sara McLaughan song…..hold on, hold on to yourself, cause this is gonna hurt like hell…”

I grabbed a napkin and held it to my eyes, “it still makes me cry.”

I blew my nose and we all took a long drink of our Mary Jane ale. And watched the Olympics. Because you know, when you don’t know what to say……sports…and beer.

And then I broke the silence.

Because ugh……silence.

“But you should tell him something Dad. Seriously. You should tell him that he is going to be okay. That his family is going to be okay. That sometimes is feels like you never, ever will. But you need to tell him that you trust, you know that Mr. B is going to be okay. You telling him that you know he can survive this, that trust when it seems like the whole world is doubting…..that trust is everything.”

“I know….I know.”

“Trust is good, Hubs interjected, “A stiff upper lip can be good too.”

I grabbed Hubs’ hand and squeezed it, “And sometimes you have to tell yourself that we all grieve in different times, in different spaces and in different ways. And the only thing you can do is honor everyone’s process,” I bit Hubs’ finger in thought and angst. “Please tell him you know. You know, he will be okay.”

We watched the Super G. People missed gates, missed times, racers fell and for some, the race, the dream they had been planning for a lifetime was shattered.

It was nothing compared to the shatter we just discussed.

But somehow, we all get up. Maybe we get up because someone on the side tells us they know we can. Maybe it’s just our shear will and moxie. But we do it. And it hurts like hell.

And years later we sit around a pitcher of Mary Jane Ale and chicken nachos, dab teary eyes with rough napkins, knowing that we survived. Is it delightful? No, it’s not. But it is peppered with delight, gratitude, moxie and survival. I’ll take that spicy blend any day.

And to Mr. B and family. We see you you. We grieve your enormous loss. Trust in this shitty process. We have nachos and beer when you are ready.

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Day 17 Delights- Selfies in the Bathroom

My niece has her Physicians Assistant White Coat ceremony this weekend.

It’s not only fun to be proud of her, it’s fun to see her so happy and excited about this next step.

We had our first celebratory meal in a bougie restaurant where we ate truffle fries and drank champagne on Restoration Hardware couches.

And like any meal with truffle fries and champagne, afterwards we found ourselves taking selfie’s in the ladies bathroom. I know- it sounds odd but it was a bonding moment.

Go eat the world beautiful niece.

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Day 16 Delights: Socks

SOCKS!

Today was chilly.

I needed some good socks.

I invested in good socks this winter. This has been a good investment. I was never a sock person. I am a sock person now.

Good socks are delightful.

I pulled out a stripped pair of socks this morning and delighted in the fact that not only are they stripped and lovely and warm…..but these socks have a fox.

We kinda love Dr. Seuss around here.

I took my amazing socks out of the drawer, and they have been sassy companion to my feet all day. Delightful.

The great thing about delights is that there is no rhyme or reason behind why something brings you joy. A delight is a gift- you just need to notice.

Not only are these awesome socks but they are darn tough…. yes I know, I am a sucker for branding but putting these darn tough socks on my feet, looking at my tootsies and deciding I was also going to be darn tough today and well, that was a delight too.

PS- I am not paid by darn tough socks to put them on my feet but I do find them lovely and delightful. Go be darn tough my fearless friends. You got this- you’re crazy…..like a fox.

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Delights Day 15- Small Things

I meant to post this yesterday in honor of the great Martin Luther King Jr.

I thought about this post all day- and then I laid down on the couch and took a nap.

My napping really kind of leads to this post.

Dr. Martin Luther King Jr.- my goodness what a man. What a leader. What a poet. What a speaker. What a mover of people. What a feeler of feels……What an extraordinary human.

On social media, there was a call to post a favorite MLK quote. Earlier in the day, I had found this gem and made it my own…..

“If I cannot do great things, I can do small things in a great way.”

In the amazing prose of MLK, this quote is not extraordinary. It does not speak to never losing hope, finding the stars in the darkness or loving my enemy.

But it does speak to what I can do today. And what I can do tomorrow.

I can strive to do small things in a great way. And maybe those small things become great.

Or maybe not.

But its what I can do.

Doing is delightful.

Happy MLK day.

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Delights Day 14- Y’all are delightful

OH…..YOU!!!

You are the best. Honestly the very best. I think you may have broke Facebook because I can’t find all the thoughtful posts from my birthday. If I have not thanked you, I cannot get to the post.

But thank you. Really- tonight I am a giddy, overstimulated, tired, 51 year old swimming in birthday love. Your friendship is a delight.

Today was spent with Hubs doing one of the things we love the most- we skied a bluebird day in Colorado. Friends joined us, toasts were made, skies were clear, snow was great………

On the 51% of a century, I have many thoughts about today, you precious people. and the beauty of this life. But tonight I baste in birthday love like a big ol’ turkey. You all are the best. I delight in you.

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Delights Day 13: Birthday Eve.

I spent my birthday eve with this amazing human- the woman who was kind enough to bring me into this world, my Mama.

Driving home this evening, I turned to my husband, “I’m a pretty lucky person,” I said.

And I don’t say that to be flippant, or trite, I know darn well how lucky I am to have this person in my life. This person who insists that at 51, my birthday still be super special.

And it was:

And now I am tired and off to bed. My belly is full of lobster, champagne and cake. My heart and head are full of gratitude and delight.

May we all be loved.

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Delights Day 11- Move It

I have a fickle relationship with exercise.

I say that knowing I have a super-tolerant body. It’s not a bikini body by any means but I know my quads are strong. I trust that my heart will pound in protest but still get me up Vail pass. My knees? Well, they were good while they lasted.

I am also not a committed athlete….and I use the word athlete loosely. During marathon training, I found a glazed donut to be the perfect combination of carbs and fat.

Protien shake? Heck no! Jelly donut? Bring it.

I am the non-conforming worker-outer.

But I do know, I am better when I sweat. My head is clear when my heart beats fast.

As I get older, I appreciate this flawed, unperfect body even more.

And I as I get older, I realize, this body is getting older too.

Eight weeks ago I tore my bicep muscle. It was a dumb move. I was reaching for something on a shelf, slipped on a wood floor and grabbed the upper shelf with my right arm.

Holy MAMA. It hurt. And bruised. I could move my arm so knew it was a partial tear but I also knew it needed rest. Swimming was out for a while. It turned purple and ached at night…..in truth, this scared me a bit….

Because it was so dumb!

I hurt myself on a shelf. And I can’t help but think that 25 years ago, this would not have been an issue.

And today, some movements are still a little angry, but I went back to Orange Theory. I made have wept a bit as I watched my SPLAT points add up, as my heart rate rose and as the angst in my head turned into strokes on a bike.

I kissed my bicep as it moved through exercises with little protest.

Bicep- you’re a good muscle and I find delight in you. I will never take you for granted or reach beyond my means on slippery floors.

You only get one of these bodies. As I get older, I realize mine is just fine.

Pass the jelly donuts.

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Delights Day 10- Tuesday with a Horse

This evening was my first session as a horse leader at the Colorado Therapeutic Riding Center. I keep meaning to post of photo with my horsey friends but every time I show up at the Center, my head and hands are busy and the phone stays in my pocket- which might be another delight.

I’ve always loved horses but as I grow older, these beautiful animals are leaving a deeper impression on me; their personalities, the non-verbal communication, the need for me to be aware of my own space as I interact with them.

My gait needs to interact with theirs.

My eyes need to focus on where we want to go.

I need to be cognizant that this beastie next to me has its very own mind and opinion. It’s a delicate partnership.

And it’s all still new for me. Today I was so nervous I relied on help from other very generous volunteers.

But as the sunset over the mountains, I tucked my horse, Junior in for the night. As he ate his dinner, I thanked him for being such a good, patient horse on my first day. His tail swished as he munched.

And I was delighted.

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Delights Day 9- Friend Time

A dear friend had major surgery last week.

A holy-crap what did they do to your foot type of surgery

A let’s stick a screw up your foot type of surgery.

None of this is delightful.

But this evening it was quite delightful to drop off a meal and sit with a friend who never sits. In fact, I posted this picture because it’s the only one I could find of her not skiing or biking, or hiking.

My friend never sits still- unless you stick a screw up her foot.

To the delight of our healing bodies, sitting still even when it’s only when you must and to friend time.

Heal fast Love 🙂

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Delights Day 8- Nieces

Our Nieces came over last night. We didn’t do anything spectacular. We ordered sushi, drank tea and watched Marvelous Mrs. Maisel (another delight). They decided to spend the night. I rustled up some pj bottoms, toothbrushes. And even though they are now adults, Hubs always does one last check in.

The nieces are in their 20’s and I love that they decided to spend a Saturday evening with us when they could have been anywhere else. I love that they complain about our always-chilly home and in response Hubs rustles up the space heater. I love that we are significant in each others lives.

They keep me honest and try to keep me hip. When pulling up an Instagram photo, I commented that someone got really bad Botox.

“Aunt Heather, that’s a filter.”

“Oh thank God.”

They tell me I can wear combat boots. I try to make them teach me the Men in Black Tik Tok dance.

What is most delightful is that as I grow older, I realize that relationships with the younger people in my life are still as important as they were when they needed to be picked up from dance practice. It is more of a give and take now- I learn a lot from these strong, younger women.

The call is different, but we all need our tribe, even if it includes a few elders 🙂

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Settle- Delights day 7

Settle.

I have never liked this word.

As a really ‘busy’ young child, I was often told to ‘settle down’. It usually meant I was in trouble and I had to sit. Or be quiet. Or both.

As a young women, people who married less than optimal Loves were told they were ‘settling’…..

I always thought settling was bad…..somewhat less than my explosive nature. If I was settling, life was less adventurous, settling was boring. We must be many things…..we cannot be boring!

But tonight, the first Friday of the New Year, my thoughts have settled. I have nothing to wrap, no parties to attend, nothing to bake, the world (thank God) is no longer on fire.

I am settled.

And I take delight in the fact.

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Delight Day 6: Slippers and a Tree

It is cold and snowy here in CO! Warm feet are essential.

I bought myself these slippers for Christmas and my toasty, arch supported feet are cute and thrilled.

My tootsies with the shadow of our Christmas tree, still standing on January 6th, is Day 6 delight.

May we all have warm appendages…..and arch support.

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Delights Day Five! Guest Post by the Delightful Corey Radman

Not only am I delighted to share this post by my lovely and talented friend, Corey. I am delighted that she is my lovely and talented friend.

Wanna a share a delight? Send me a note 🙂

Here’s Corey!

Positive Self Talk

By Corey Radman

“Where should we put this rotisserie chicken?” I asked Ringo as I put the groceries away. He wagged his tail at me like he had a few ideas to contribute to the discussion. Overruling the canine, I said, “Let’s put this in the way back of the fridge…”

I looked up to see my husband standing in the kitchen with a look that said, Should I make fun of you, or should I make an appointment for you? “Who are you talking to?”

“The dog,” I said, a silly grin creeping across my face. My eyes slid to the side. We both knew I’d be chatting aloud even if I was utterly alone.

So, sue me. I talk to myself. Aloud. I’ve always been this way. As a child, I spoke quietly to Laura, my imaginary companion fresh from her little house on the prairie. “This is a telephone,” I’d explain. “You press the buttons, and it connects you to other people far away!”

I quashed the instinct once I realized it made me “weird.” I spent several decades appearing to pass for normal, but then I started working from home as a writer, and well, the words escaped my shower diatribes and splashed into the living room, into the car, out onto the sidewalk where maybe I’m talking to Ringo, maybe not.

Sometimes I’m practicing a conversation I might have or rehashing one I wish had been wittier. I’ve also found if I talk about the item I’m looking for, I won’t forget between rooms, which is how I got to be walking through the house one day, wondering aloud, “Where are my marbles? I can’t find my marbles!”

Some writing gets talked out first, as well… this essay for example. (So meta.) I’ve gotten to the point where I have to think this way; I don’t really know what my opinion is until I’ve heard it aloud. Often, I’m just spitballing until the truth of a matter comes out of my mouth, and it settles into my gut like warm risotto.

At age 47, I no longer care if my spouse or neighbors think I’m nuts. I’m great company. I crack myself up a lot. Not giving a fuck is delightful. Turning into that dotty lady who talks to her dog is absolutely priceless.

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Delights Day Three

Today was a day.

Today was a day filled with more news of those who lost houses.

Today we said goodbye to a good man- we watched the service via Facebook Live due to COVID outbreaks.

But today as I absently took out the trash, I was greeted with cold Winter air and this clear sky above.

The simple, unexpected beauty took my breath away.

And that’s the thing about Delights. It’s not day or a time. Delights are fleeting moments of Joy right before our eyes…..begging our attention, wanting to be noticed.

If only for a brief moment while taking out the trash.

Happy Day Three.

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Delights Day 2- This Community

I think many people come to this area in search of beauty- in search of connecting their soul to something a bit more wild.

My own healing weaves heart-pumping climbs up Flagstaff mountain to look over the front range. As I stand on top of summits, stinky and sweaty, I always think in gratitude how extremely lucky I am to live in such a place; to summit such beauty in the morning, indulge in a breakfast burrito and be at my desk at 8:30…..okay maybe 9:00.

And the majesty of the view extends to the beauty of this community. My social media channels are full of friends reaching out to others with GoFundMe links- supporting so many who have lost. Donation centers are posting that they have so much- they are asking people to spread the word to let those impacted by the fire that they have supplies and would love to distribute to those who need them.

Therefore, my second Delight of the Year is this amazing, compassionate, generous community. How lucky am I to not only live in this place but live here with you.

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The Feels

Christmas night I sat with family and friends and we talked about bidding adieu to 2021- a year of false starts, unmet expectations and uncertainty.

“I never like to hold a grudge on a year,” my friend Heather said, “365 days lead to good things and bad things. No year is ever, truly 100% bad, is it?”

I fully agree! As a person who does not like sadness, my religion is finding the not sadness 🙂

I say this having just come off an ugly cry phone call with a friend- a dear friend whose SIL lost her home in the Marshall Fire.

This time is heavy. F*ck this time is heavy.

I was speaking to another friend today, “It is in my person to feel the feels, but Ginger….I’m tired of feeling the feels! We need a break. How much can we absorb?”

I am not a bounty paper towel.

And we are fine. Just like any other time of crisis in the last two years……we have heat, we have water, we have each other. We are fine.

But winds raged in our part of town on December 30th- 110 mile winds ripped power lines. Broken power lines hit dry grasses that have not seen rain in over four months. Dry grasses made explosive kindling. Kindling made hot embers. Embers flew through the sky in 110 mile winds…..hitting other trees, barns, homes……so many homes.

And suddenly my beautiful part of the world was on fire- extreme, intense, firestorm, fire. As pre-evac warnings were issued, my brother’s family stared to pack their van. My nephews packed their nerf guns from Santa. When you are five and told to pack a bag of important items, screw the toothbrush, get the nerf guns.

I write this knowing how fortunate they were to consider what to pack- thousands of other families grabbed their loves and left with hope and a prayer.

And now we sit in the new year in this charred land- a land that we love. A land that we hike, bike and live in. Where do we find hope in this promised new year? How do we say goodbye to a year of conflict, heartbreak and loss?

Well, I just don’t know.

And because I just don’t know, I had to write down my top ten list of gratitudes for 2021: Things are quite crappy but what makes us happy 2021 list:

  • I turned 50! I thank the universe for 50 years in this beautiful life
  • I celebrated my ALL my parents’ birthdays- my goodness- so grateful to be so parented
  • I got vaccinated- YAY Science!
  • I skied with my dad- at 71, he’s a ripper
  • I watched my niece graduate from Cornell
  • I raised another $100,000 for mitochondrial research
  • I rubbed my Granny’s feet
  • Hawaii with my Hubs
  • Weekends with beautiful friends- you are oxygen to my soul
  • Holidays with my Tribe

Another year- a year of life with you lovely humans.

AND because no good deed goes unpunished- no awesome event is without numerous failures…..I feel we must try for another 365 days of delight.

Last year I made it to February. Lets try for March! Check out tomorrow for day two of Delights.

Delight Day One: I delight in my Tribe. Those who offer no solution, only communion, harmony and trust. Lets move together in this New Year. Let’s pause to Feel the Feels, knowing we are human complex beings.

It won’t always be good.

It won’t always be bad.

It will be.

And I will be with you.

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Hard Feelings are Hard

Today I deleted my Miracles for Mito auto signature from my Google account.

And I wondered, “will I ever be an Executive Director again?”

And then I wondered if I wanted to be an Executive Director again.

Many have reached out to me as we have closed Miracles for Mito, asking if I am okay. Some have noticed a change in my tone, perhaps an underlying touch of sadness.

Ugh. I hate sadness. Sadness sucks. I am much better at happy.

And I appreciate those who have called me out on my tone. Yes, I have sugar coated this transition a bit. Yes, my heart is bruised a bit.

Ironic isn’t it? I have posted here when Hubs and I have gone through tough times, chatted about my inmate journey with grief, cried like a baby with you when we moved out of our old house, but I have diverted this very important, painful decision…..nothing to see here….nothing to see.….keep moving on….

I wonder if I will ever be so passionate about a cause again. I know the answer is no and I know that’s okay. Nothing is stronger than Mama love coupled with grief and the desire, no……the NEED to change the world.

I still have a little ember burning in my belly but it’s not enough to burn the house down.

I have learned that this rare disease space is hard. Family support is hard and a huge trigger for my own trauma. We are all fighting to tell our stories. It is in our stories that our kiddos live on. In our stories that their legacy prevails. As a result, we are driven by broken hearts. Collaboration is hard. We all want to be the hero in advocating for a horrible, rare disease that has no good outcome and crappy federal funding.

I do not regret my decision. I am excited to see how we can rally around my brother and move the needle on mitochondrial research in a local capacity. But I do believe you can live in a place of certainty and heartache; knowing that your heart will heal and trust the certainty of your decision.

And as thoughts come during the winter solstice, during our darkest days, it is time for me to trust what I cannot see next- feeling, touching, reaching out for this next truth.

Many of close the year with bruised hearts. May the certainty of our decisions carry us to our next light. May the light in me honor the light in you.

And yes, hard feelings are still hard.

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Butter Crust

On Sunday I made a pie. It was a good pie, a pretty pie. A pie so pretty I felt the need to post my pie prowess on Facebook.

Who am I kidding, I post everything on Facebook but I did like this pie.

And a couple people responded with pie crust angst- people who I admire, smart people who I respect…alas, the saying easy as pie is just untrue. Pie, like everything else can be difficult.

I too once had pie crust angst…..therefore I am posting a post about food.

Don’t let me get into this habit. It’s so easy to talk about food. Almost…..as easy as pie.

So here folks, is my story about the butter crust.

I did not grow up on butter. As a child of the 70’s, food was not edible unless it was processed. Margarine, American Cheese, Cool Whip……butter was evil and fattening…..pass the Velveeta, Miracle Whip and Wonder Bread.

Time in Germany and marrying a man with Danish heritage has taught me one thing….

Butter is love.

The amount of butter we consume is somewhat staggering.

Last weekend we entertained. The conversation went somewhat like this……

“The crust on this filet is great. What did you do?”

“Sautéed them in butter.”

“These onions are amazing. How did you get them to caramelize like this?”

“Butter.”

“Blistered greens beans?”

“Yeah…butter. Would you like some more wine?”

So back to the pie.

Butter.

I too was daunted by a non-processed, whole butter pie crust.

But you can do this. Lets start with some basics…..

Number One:

This is a pastry cutter.

You need this. It’s like four forks on steroids’. You need this to break up the butter in the amazing butter crust. Some say a Cuisinart will mix the same. I say no! Seriously, I think too much air gets in the crust with a Cuisinart. Get your arms in there with a pastry cutter- remember this is love.

How can you celebrate a holiday if you can’t tell your family how sore you are from making pie dough?

On another note…..I was going to take my pastry cutter to Virginia for Thanksgiving but I think TSA might confiscate it as a weapon.

Thought Number Two: Vodka vs. Ice Water

What the whaaaaaaa? Yes, I can mix alcohol into any conversation. There are many recipes that use cold vodka instead of ice water to mix the crust.

My thought– Sigh, no vodka. I know, it breaks my heart to say so but I think vodka makes the crust too dry. Granted, I live in Colorado and we haven’t seen moisture in like 3,421 days…..so go with what works.

Thought Number Three: Plastic Wrap

Who promotes plastic wrap for anything? Yes……the evil of all globally minded citizens but trust me…..take that chilled ball of dough and roll it between two sheets of plastic wrap. Forget the flour- go straight to plastic wrap. The crust rolls out beautifully and slides right into the pie pan.

Cold butter, cold (ice) water, pastry cutter, plastic wrap and a sense of ‘hey y’all…… I’m making you a pie. It might not be the best pie but it’s a butter crusted pie. Because I love you.’

Love goes a long way….almost as long as butter.

And because I get ALL of my sources from The Google…..here is the recipe I use. Go forth with love and butter. One more note- I use salted butter and do not add the extra salt….. really…..unsalted butter should be banned from civilized society.

And Happy Thanksgiving Dear Tribe. I am grateful for you all.

ALL-BUTTER PIE CRUST

INGREDIENTS

  • 2 ½ cups all-purpose flour
  • 1 cup unsalted butter (cold, cut into small cubes)
  • 1 teaspoon salt
  • 1 teaspoon sugar
  • ½ cup cold water (plus one ice cube)
  • 2 teaspoons vinegar

INSTRUCTIONS

  • Prepare the water/vinegar mixture. Drop an ice-cube into a measuring cup and fill the measuring cup up with water to the ½ cup mark. Add 2 teaspoons of white vinegar and set aside.
  • Mix Flour and Butter. Combine the dry ingredients together in a medium sized bowl and toss with a fork to mix evenly. Use a pastry cutter to cut the butter into the flour until the mixture forms large, coarse crumbs.
  • Add Water. Pour the water mixture, a few tablespoons at a time, into the flour/butter mixture and toss with a fork until the dough is evenly moist. Add water slowly to get the right texture.
  • Gather the dough. Use your hands to quickly bring the dough together in the bowl. Do not over work the dough.
  • Divide and Chill. Divide the dough in half and flatten into disks. Wrap the disks separately in plastic wrap and chill in the refrigerator for at least 1 hour.
  • Bake according to what your pie recipe calls for.
Life Today

Happy Veterans Day

I spent three years in Germany during my twenties.

It was one of the most memorable times of my life. I was a civilian working for the military at an Armed Forces Recreational Center.

I served those who served.

Really I taught the Littles of those who served how to ski, which wasn’t a bad gig in the German Alps.

In the summer I found random jobs; lifeguard, pizza delivery and one summer at the German-American Golf Course.

I worked in one of the most beautiful places on earth

Image result for garmisch germany
It was also 1994, 50 years since World War II  and the impact of what happened here two generations ago was palpable.

The golf course sold American candy which was crazy because we lived in the land of the very best chocolate and we were trying to pawn off Twix Bars and Reese’s Pieces. A German man would come in often and buy ten Hershey bars at a time.

I asked why the Hershey Bars.

“You have the very best chocolate! Right here! What’s so special about a Hershey Bar?”

He told me that the Americans came through Garmisch on April 29, 1945.

He was six.

“I was so hungry. We didn’t have anything left to eat. The soldiers arrived and they gave the children Hershey bars. They were the very best thing I ever ate. Nothing in the world tastes as good as a Hershey Bar.”

He carefully unwrapped the chocolate and gave me a piece. I closed my eyes and tried to taste what he tasted.

I could not

I have never been that hungry. I have never been that scared. I have not had my world turned upside down at age six. 

As he ate I piece, he smiled and nodded his head; perhaps thoughts of hope, gratitude, memories of a six year old belly that felt a little less empty.

I felt so honored. Honored that this man shared this sacred memory and his sacred chocolate. Honored that he remembered the day 49 years ago not with tanks and strange men but with soldiers who share chocolate. And I felt honored that these brave men, my fellow Americans made this small boy feel so much better.

Happy Veterans Day.  

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And I…..Wanna Thank You.

July 25, 2010, I sat on a gurney in the middle of Littleton Hospital. I had wiped a series of endless tears, knees curled up, police milling around, nurses giving me sad, uncomfortable looks……I was desperately searching for meaning in my life.

We had just lost our girl.

I took a wadded, snotty Kleenex in one hand and held my Aunt Tracy’s palm in the other, “I don’t know what to do with the rest of my life.”

She squeezed my snotty hand back, “You will find it.”

I wasn’t so sure. I wasn’t so sure at all.

Somewhere along the twisted, half-blind trail of grief, we started a memorial fund for Samantha. I stared at the $8,000 we had raised and wondered the next step. What to do with this money? Donate to Children’s Hospital? Give to the United Mitochondrial Disease Foundation? Take the money and run? Mexico is nice this time of year……

Instead, my dad and I filled out an application with the Colorado Non-Profit Development Center (CNDC), with the goal to become a nonprofit supporting families impacted by mitochondrial disease in Colorado.

We thought about a name……I wanted a name that was agnostic to my grief, a name that was not about me or my family, I wanted a name that everyone could relate to…..and Miracles for Mito was born.

In the spirit of strength- because no one should walk this journey alone.

The CNDC accepted our application and we started with the $8,000 from Samantha’s Memorial Fund. My friend Laura helped to create our beautiful logo. I cried in a Walmart parking lot as I reviewed the butterfly composed of two hearts with the intricate mitochondria connecting the wings. It was perfect.

It was love. It was my heart. It was my grief, my soul.

Eleven years later, it is with bittersweet feelings that I write this post. Eleven years later, I announce to this sacred tribe that we are dissolving Miracles for Mito as a nonprofit.

I want you to know that eleven years later, my heart and mind have settled into this decision. I will always walk away with apprehension, wondering what more we could have done, the difference that could have been made.

I also want you to know that eleven years later, I am okay to move on from this space. I need to move on from this space. That eleven years later, the half blind, grievous person has given herself permission to do something else with her life.

Sometimes movement is a gift.

What will we do next? Stay tuned. I will not sway far. I will continue to climb mountains and ask you for money in the sake of mitochondrial research and my dear family……it will just look a little different.

Elven years ago I was shattered. Eleven years ago you supported my cause…lets move forward in the spirit of strength…..and I thank you for never letting me walk this journey alone.

Let’s find out what’s next.

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Unravel

Sigh.

That is my post-two-girls-weekends’ sigh. My post belly laugh, very dehydrated, kinda tired, so grateful sigh.

The past 20 months took so much: over 5 Million souls worldwide, 775,000 in the US.

The past 20 months reset everything; our work, our relationships, our health, our trust.

Personally, I have navigated these times somewhat unscathed, so unscathed and so distracted by everything else going on the in world, that I didn’t realize I was kind of scathed.

We need each other- not just in a zoomie call sense or a text-you sense but a I need my people in a deep hug, embrace you, committed time sense. In the last 20 months of convincing myself I was okay, I forgot how much I miss you and that I’m really not so okay if I can’t be right there with you.

Driving up to Vail on Girl’s Weekend part 2, I was talking to a friend on how best to connect when things are chaotic. “When things are nuts,” she said, “I can’t dive into the nuttiness over a quick conversation. I need time; time to unravel my feelings, time to separate myself from the chaos.”

I laughed at the irony, “So when I call on my way to swim and I say I have ten minutes and cell phone service is bad but I really want to know how are you doing……that’s not helpful?”

I love this word….unravel.

To unravel: to resolve the intricacy, complexity, obscurity of……..

Unravel takes time; coffee by the pool, hikes in Vail Valley. Unravel takes hugs so deep you feel the others’ shoulders relax and you breathe the same breath. Unravel takes trust, heads on shoulders, someone grabbing your hand and saying, “I’m so sorry about your Grandma,” and you holding back and saying, “I’m so sorry about your Mama.”

Unravel is a box of See’s Candy purchased last minute in the airport to honor a dear Love, Melissa Etheridge, Crowded House and an impromptu dance party. It’s only once the tension is released and the knots loosen that what once seemed like an insufferable, unworkable mess becomes the material for the next great project.

I forgot how lovely it was to unravel with my friends. The importance of unraveling. The need to unravel.

After two glorious weekends, I came home and kissed my husband; my partner in these last twenty months, the one who consoled me when I told him through big tears during our stay at home orders that I needed him to be a better girlfriend. My person during this time.

“How was the weekend?” he asked.

“So lovely. I love this time with my beautiful, strong, complex friends. We unraveled.”

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One Million for Mitochondria- Blazing the Next Trail

This year collaborative efforts from Summits for Samantha, Miracles for Mito and generous personal donations marks $1 Million donated to the Mitochondrial Clinic at CU Anschutz…..ridiculously proud does not do justice to how I feel about this number.

It’s pretty fun to make this announcement during Mitochondrial Awareness week- a week committed to education and awareness about this incredibly sucky disease. If you know me and have traveled on this journey, you know ALL ABOUT your mitochondria and the need to love them unconditionally. LOVE YOUR MITOCHONDRIA!!!!!

But I have a confession……

16 years ago I really knew nothing about my mitochondria. I knew them from biology class as the Mighty Mitochondria, the powerhouse of our cells but I really had no idea how freakin’ awesome and instrumental they are to life.

I miss those days.

A mitochondrial diagnosis is so hard. Half the journey of getting to a mitochondrial diagnosis is getting the disease diagnosed. And after many tears have been shed, many of us sit across from a specialist to only hear fated words…..

There is no cure……

Progressive……

We just don’t know……

And we walk away wondering…..how can you not know? How can you not tell me what to expect? How can you shrug your shoulders? How can there not be something, something hopeful or at least definitive that you can tell me?

It sucks being a medical pioneer. Or having your child be a medical pioneer or in many cases, many Loves in your family, being a medical pioneers; to be the first to adapt to new technologies, medicines and therapies…..

And in many cases we are the first……The first family to have a certain mutation. The first to be part of a clinical trial. The first to rally around new FDA guidelines. The first to try an off-label med.

Why is Mito so hard?

In many ways Mito is new territory. The first molecular diagnosis of a mitochondrial disorder was in 1988- 33 years ago.

33 year ago I was a junior in high school. Now, I KNOW I’m an old lady but when the Greek physician Hippocrates (460-370 BC) used the word carcinoma to describe cancer forming tumors, you know we are a bit behind in Mitochondrial research.

Ironically, both cancer and mitochondrial research have advanced significantly since I was a junior in high school- much of this has come from the world’s largest collaborative biological project- we mapped the human genome. It took us 13 years to map the base pairs that make up the human DNA. This mapping has been a springboard to faster genetic diagnosis’, identifying causes of rare diseases and ultimately therapies and cures to these diseases.

In 1988 we identified ONE molecular diagnosis of a mitochondrial disorder. In 2021, we have identified over 260 genetic mutations that contribute to mitochondrial myopathy.

Is 33 years the speed of light?

In the realm of science, 33 years is pretty fast.

But when your Love is suffering, progress seems horribly, frustratingly slow and we will never get there in time. For those watching skills slip away, for those who live everyday in the face of a progressive disease, nothing is fast enough.

And for that, there is nothing I can say except for I get it. And believe it or not, science gets it too and our amazing doctors at Anschutz…..yeah they get it.

May the next 33 years be absolutely unbelievable.

Life Today

Happy Veterans Day

I spent three years in Germany during my twenties.

It was one of the most memorable times of my life. I was a civilian working for the military at an Armed Forces Recreational Center.

I served those who served.

Really I taught the Littles of those who served how to ski, which wasn’t a bad gig in the German Alps.

In the summer I found random jobs; lifeguard, pizza delivery and one summer at the German-American Golf Course.

I worked in one of the most beautiful places on earth

Image result for garmisch germany
It was also 1994, 50 years since World War II  and the impact of what happened here two generations ago was palpable.

The golf course sold American candy which was crazy because we lived in the land of the very best chocolate and we were trying to pawn off Twix Bars and Reese’s Pieces. A German man would come in often and buy ten Hersey bars at a time.

I asked why the Hersey Bars.

“You have the very best chocolate! Right here! What’s so special about a Hersey Bar?”

He told me that the Americans came through Garmisch on April 29, 1945.

He was six.

“I was so hungry. We didn’t have anything left to eat. The soldiers arrived and they gave the children Hersey bars. They were the very best thing I ever ate. Nothing in the world tastes as good as a Hersey Bar.”

He carefully unwrapped the chocolate and gave me a piece. I closed my eyes and tried to taste what he tasted.

I could not

I have never been that hungry. I have never been that scared. I have not had my world turned upside down at age six. 

As he ate I piece, he smiled and nodded his head; perhaps thoughts of hope, gratitude, memories of a six year old belly that felt a little less empty.

I felt so honored. Honored that this man shared this sacred memory and his sacred chocolate. Honored that he remembered the day 49 years ago not with tanks and strange men but with soldiers who share chocolate. And I felt honored that these brave men, my fellow Americans made this small boy feel so much better.

Happy Veterans Day.  

Life Today

When a Pregnancy doesn’t turn out- please note- tough read

The history of my last ten years have placed me on the fringes of normal society.

Sometimes I embrace living on the peripheral.

Other times I hate it.

Most often I try to blend; which means biting my tongue, smiling politely and trying to think of a vague response when asked at a cocktail party how many children I have.

Sometimes I reach my point and have to use my voice.

Today is one of those days.

I can’t get words from Wednesday’s debate out of my head.

The descriptive ‘rip the baby out of the womb at nine months’ out of my head. And sadly, the repeated posts on facebook continue to haunt me.

I should unfriend, I should hide,  but thoughts about our own experience are eating my brain so, I will write.

Our son died in utero at 9 months. I remember the doctor searching for a heartbeat and clearing out the ultrasound room to confirm our worst thoughts.

I was given the choice of having a C-section or birthing a baby I would never hear cry.

I opt’d for the C-section. “Please just knock my out,” I said

The doctor looked at me sadly, “We can do that but it’s major surgery. You will have to stay in the hospital for at least 3 days to recover and it would be six months before we would recommend getting pregnant again. Your body will heal faster with a natural birth”

So, I was induced and waited through the night to have my son.

There was no ripping. Ripping would have been an easier choice.

All babies are born in the maternity ward- no matter the outcome. We heard lullabies played over the speakers when another child was born. My husband had to walk by congratulatory families in the hallway as he went to get a cup of coffee.

We left 24 hours later; greeted by a nursery that would not see a baby and a recommendation for a funeral home. My milk came in the next day and I sat in the shower and cried.

The only thing that was violently ripped out that day was my heart.

“But Heather,” you say, “You did not abort your baby. Your situation was different.”

And if you still hold onto that argument, you missed the point. This is how babies come into the world no matter the outcome, at nine months.

No one would choose to go through this because they want to…..because they ‘changed their mind’ about having a baby. When something goes wrong this late in a pregnancy, it goes very, very wrong.

So Stop- please stop using verbiage that sounds easy, dramatic, evil. The ones you are hurting are the ones who are already hurting.