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.
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.
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.
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.
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.
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.
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 thisis 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.
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.
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.
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.
Welcome to Samsmom. I'm Heather and this is my journey as we navigate love, loss, rare disease, hope and resilency. Our family carries a POLG-1 genetic mutation that took my two children, Jack and Samantha and most recently, my brother Ryan. It's not an easy place to be, but here we are- with humor, love and grace, here we are. 