Category: blog

Yesterday was Mother’s Day.

Mother’s Day and I have complicated relationship.

I love Moms. I love my Mom, I love my friends who are Moms, I love the people who have Mothered me along this road of life. This tribe of women has influenced me, held me on high, approached me with truths at times hard to swallow. We are all in one way or another, continually raising each other.

It is a sacred, magical, heartbreaking place.

It is May and in the next couple weeks many of my dear friends Littles will graduate from high school. I love these kids. I love seeing the young adults they have become, the promise, the glow, the future that lies ahead for them…..

Jack would have graduated this year. I vacillate between dreaming of life that was not ours to live and how the hell could it have been 18 years since so many of my friends and I took that ClearBlue Pregnancy test and realized that our lives were going to change forever.

But we really didn’t realize how our lives would change…..did we? We dreamt of cute snuggly onesis, the best breast pumps, the perfect color to paint the nursery, we lived in dreams fueled by expectations, promises held by a plus sign from a $12 pregnancy test.

Along the way, in these 18 years of life, motherhood held us to the very highest test. We would lose Littles, we would lose Mamas, we would make heartbreaking phone calls. We would huddle and hold each other closer.

And as Littles now go off to find their own world, their own space; what is left is you and I, cheering them on from afar, watching the sky to see what direction they take. Watching in joy, at times in fear, and anticipation as they make their way.

We are all in one way or another, continually raising each other.

All this from a $12 pregnancy test.

I’m a tad late to the party but I could not let today pass without wishing you all a Happy Rare Disease Day!

A rare disease is a condition that impacts less than 1 and 2,000 of us.

Did you know that between 3.5-5.9% of us have a confirmed, diagnosed, rare disease? We are 1 in 2,000. Some of us are 1 in 200,000, some of us are 1 in 2 million, or 1 in 200,000 million.

There are 6,000 known rare diseases and 72% of those are caused by a genetic mutation.

Our mutation comes from the POLG1 gene. It is more common among mitochondrial deviations- it is suspected that 2% of us are running around with a POLG1 mutation and many of us don’t even know it.

Being mutated is no cause for alarm! Like all evolving beings, we all carry genetic mutations. W

e are all our own genetic X-Men. It’s when those mutations become disease-causing that things go awry. And because families share the same genetic soup, disease causing mutations can be far reaching, impacting multiple generations with devastating results.

My beautiful, rare Loves:

The crazy thing within our family is that Rare is that it has made us…….Rare.

This blended family huddles when needed. Holds each other close, rally’s, never leaves an event without saying ‘I Love You’, cries openly, and hugs a little longer.

But we will all say, resoundingly, that being rare sucks. We have endured life-changing losses, ugly cried and cursed the heavens for this sucky genetic lottery. If we are the X-Men, I’m waiting for my proverbial Wolverine.

Rare Disease Day is about families like us. Families searching a cure; collaborating, advocating, fighting for a cure. There are 300 Million of us……suddenly rare is not so rare.

To a cure.

I’ve been writing for a local publication- this young family was fantastic, so fantastic I thought I would share 🙂

“It is not the mountain we conquer, but ourselves,” Sir Edmund Hilary.

It’s not easy to keep up with the Jones’s. In August, Tanner and Tyler Jane Jones will have been married for seven years. “It’s been a busy seven years,” says Tyler Jane. “We are just enjoying where we are right now.”

Tanner and Tyler Jane were high school sweethearts. It was their love of nature and the outdoors that brought them together. They met shooting archery in the Jefferson County 4-H club and have been by each other’s side ever since. Tanner joined the Marine Corps and served our country for four years before being honorably discharged in 2016. Ten days after Tanner left the Marines, he and Tyler Jane were married in Grand Lake.

“My favorite memories always surround us being outside,” says Tanner.

Tanner is a professional rock climber. The love of this sport changed the trajectory of his life and sometimes presented challenges that may have seemed insurmountable. On June 12, 2008, 14-year-old Tanner was climbing in Morrison. It was a hot day, and he was finishing up his last climb when he fell. Tanner suffered a severe fracture to his right leg and was piggybacked down the road. He went on to graduate from Chatfield High School, met Tyler Jane in 4H club and went on to enlist in the United State Marine Corps.

Tanner’s leg never healed properly but he learned to run through the pain when he passed the Marine Corp Physical Fitness test. Some might say the Marines instilled Tanner’s grit and resiliency, I believe it was there all along.

Ongoing surgeries, infections and an intense lack of mobility compelled 27-year-old Tanner to make a life-changing decision. On January 11, 2021, doctors amputated his right leg.

Since that time, Tanner has climbed Cotopaxi, a 19,400-foot volcano in Ecuador with other amputee athletes, and in 2022 he competed in the Para Climbing Nationals and the World Cup for Team USA. Tanner placed 7th in his division, less than a year after he decided to part with his right leg.

It’s a lot of life for a 29-year-old, a life best lead with an amazing partner, Tyler Jane. “In seven years, Tanner was honorably discharged from the Marines, we got married, had two babies, we both lost our moms to cancer, and Tanner went through a life-changing surgery. We’re just enjoying our life as a family right now.”

Life as a family includes two busy young kiddos; Bode (3) and Hadley (8 months). Bode is a busy toddler who climbs on everything, loves playing with his chickens, tractors monster trucks, and trash trucks. Bode has started climbing with his dad. Tanner strategically places gummy bears on handholds to keep Bode motivated. Hadley is a smiley baby who loves her dad and playing in water. We’re pretty sure she’ll join her brother climbing in the next year or two.

The Joneses’ are also raising fur babies. “Cora is our 7-year-old silver lab. She is our first child. We got her one month after we were married. She loves playing fetch, swimming, and eating everything and anything. The kiddos are her walking snack machines. She also enjoys catching a quick snooze in the sun,” says Tanner.

Pancake is the family cat. She is happiest outside chasing squirrels with Bode. The family chickens, Buttercup, Blossom, and Bubbles, complete this family. Buttercup is pretty attached to Bode. In fact, he’s the only one who can hold her. “The rest of us appreciate their eggs.”

Having grown up in Colorado, Tanner and Tyler Jane have many fond memories of this area. In March of 2020, they brought the house that Tyler Jane lived in the first two years of her life. “It’s been fun to bring our babies home to the same nursery that Tyler was brought home to and to make her childhood home our own,” says Tanner.

In December 2021, Tanner graduated with a degree in Recreation Therapy. He now works with the National Sports Center for the Disabled, guiding rock climbing, rafting, and ski programs. He recently started a competition team for individuals with intellectual disabilities in the Front Range.

Tyler Jane works in the health insurance vertical. She recently piloted a project focused on new moms, providing support during their fourth trimester and as they make the transition back to work with a new baby. She is passionate about women’s health and advancing how we as a society support new moms. Before she became a mom herself, Tyler Jane was the 2013-2014 Miss Rodeo Jefferson County. Perhaps that’s why she moves through these changes with ease, this isn’t her first rodeo.

Resiliency, determination, and a deep commitment to each other has grounded Tanner and Tyler Jane through challenging times. Tanner’s surgery has been life-changing. He no longer lives in pain and is able to embrace once again the physical activities that bring him joy. As a gifted rock climber, he is a leader in the para community, helping others find their own passions and push themselves beyond their limits.

“My favorite memories always surround us being outside. One of our most recent memories was rafting with Ty, Bode, and my dad for Father’s Day.”

When not summiting Cotopaxi, competing in the World Cup, or providing support to new moms, the Jones’ can be found throwing the ball for the pup at the park, enjoying the trails at Stanley Lake or catching bugs with Bode; outside, together as a family.

Neighbors of Northwest Arvada extends a sincere thanks to Tanner and Tyler Jane for sharing their story. You are an inspiration to us all; a story of love, hope and a reminder to us all that the climb is part of life; grit, determination and gummy bears lovingly placed on the handhold can make all of the difference.

I once told a coworker I needed to marry a skier.

She told me I was being superficial.

“Marriages are based on more than that.”

We no longer stay in touch. But I did, indeed, marry a skier.

My favorite days with Hubs are on the mountains- it is my happy place, it’s his happy place, and I am so grateful we share this. Mountain vistas and powder are a love language.

We had dreams of bringing little skiers into this world.

We did not bring little skiers into this world.

But we did get nephews……poor little nephews who had absolutely no idea the skier expectations from their aunt and uncle.

And then I realized that teaching kiddos to love skiing is hard. Really hard. It’s filled with early mornings, cold hands, sore feet, hauling gear and thoughts of ‘why are we doing this?’ from both adults and kiddos.

And then they get it, just when everyone is about to give up; the feeling of flying, the magical ‘shoosh’ down the mountain, the cries of ‘whhhhooooopppppeeeee’……and your Auntie heart grows ten times; ten times by ten.

My auntie heart grew ten times this weekend. Our youngest nephew, the one we weren’t quite sure if he would love skiing, fell in love with skiing. Like any love affair, this process was fraught with uncertainty, a little fear and finally, joy.

Some of this may have been my fault.

Youngest Nephew (YN) and I were skiing on Saturday- it was time for lunch and we started making our way back to the house for a sammie. The road back was a blue run aptly named ‘Home Again.’ Another skier told me it was a mellow blue, something we could easily manage.

Pshaw.

The first couple of turns were just fine and we slowly made our way Home….Again. We stopped as the road curved and the slope seemed to disappear, meaning it’s a bit steep. Holy Schmoly, not only was it steep but it twisted sharply to the left; over the curve was the ski area boundary and a significant drop-off.

I may have whispered an F-bomb or two.

The nephews call me Hehe, a nickname I love but when YN whispered, “Hehe, I’m kinda scared.”

I may have whispered another F-bomb.

“Buddy, I get it. But I am not going to let anything happen to you and we are going to get down this.” I told myself to pull it together and placed YN between my skis. I made a giant wedge from hell and we slipped down what was supposed to be ‘a road’.

We got down the first pitch.

“I think I need a rest,” said YN. And so we rested for a bit.

Home Again continued, slip, ski, rest, thank my doctor for a great new knee, kiss my gigantor quads. At one point we sang “You are my Sunshine” which was Samantha’s song, which made me cry, so we rested a little more.

It took us an hour to get Home Again. At the end, the road finally mellowed a bit and YN found this tremendous confidence. He was skiing, stopping, singing, and giggling.
We got to a fork in the road and took a rest. “Buddy, I am so stinkin’ proud of you. That was hard and scary, and you did great, bring it in.”

We exchanged a big bear hug. “Yeah, that was hard but kinda fun. I knew I could do it.”

He skied to the house just in time for Hubs, Popsie and his big brother to see his amazing finish. They cheered as he came to a perfect pizza stop. He casually took his skis off and went inside for a turkey sandwich.

I took my skis off and collapsed in a ski bank. Popsie found me later, “You okay, Hehe?”

We did not do Home Again, again, instead we did laps on a wide, very open blue run until the lift closed. When the slope mellowed, YN would tuck and put his arms behind him. “Whatcha doing, buddy?”

“This is how all the fast skiers ski……..Whoooopppppeeeeee.”

There are moments in life you will remember forever. This was a moment; when YN and I made our way down Home Again.

Ahhhhhhh. Happiest of Valentine’s Day dear tribe!

On this day, I want you to know that I love you.

Truly.

In the words of great 80’s icon Howard Jones, ‘What is love anyway? Does anybody love anybody anyway?”

I say yes, HoJo. Yes.

Inspired by this song, I looked up love in the dictionary.

LOVE:

• A strong affection for another arising out of kinship or personal ties
• Attraction based on sexual desire (easy there Webster)
• Affection based on admiration, benevolence, or common interests
• Warm attachment, enthusiasm or devotion
• To Cherish
• To Thrive

My favorite is to thrive……love….love makes us thrive.

I LOVE spending time with you. I LOVE my community….,,you…..you help me to thrive, to grow, to reach beyond who I am.

Love is a connection.

And what are we without that?

Valentine’s Day promises us chocolates, flowers and fancy bling.

I hope you find more……a hand to hold, a friend to call, a sacred moment to yourself…..a hand written note…..connection.

Happy Valentines Day dear tribe. Much love.