Blown Away

Cooper is the subject of the new children’s book, Super Cooper Wins the Stanley Cup, written by Jack Gates. Proceeds from the book support Triumph Together, a non-profit program that works to connect collegiate and professional athletes with kids at Children’s Hospitals by getting them tickets to games, meet and greets with players, signed gear, videos of encouragement before surgeries, etc. Jack and his work have already created a lifetime of unforgettable memories for Cooper.

Jack, a San Diego resident, joined Cooper in Colorado to promote the book. But first, they spent time at Children’s Hospital South Campus, handing out the book and the Coloring and Activity Book to kids who share the same hallways Cooper so often visits.

Cooper’s post about handing out books at Children’s Hospital Colorado

Seeing our hospital family was a heartfelt homecoming. We were at the hospital for Cooper’s infusion 6 – 8 hours one day a week for 7 years. We did COVID with these ladies, they hugged me as I cried and prepared for Cooper’s surgeries. They welcomed us with open arms and every comfort possible when we came back after surgery. We celebrated and decorated for holidays and birthdays together in those sterile rooms. They found the best toys and activities for Cooper to pass the time. They helped Cooper with homework. We shared parenting trials and tribulations with them. They brought extra pillows and blankets for Velocity. They celebrated 5 years of treatment with Cooper in a day he called “The best day ever”. They fix his hearing. They cooked him his favorite chocolate chip pancakes. They welcome him at the front door.

It was in one of those sterile infusion rooms during COVID that Cooper first met Jack and some of the Colorado College hockey team on a ZOOM, playing a simple game. From that ZOOM, Jack easily recognized Cooper was a big hockey fan. Next came an autographed goalie stick from the Colorado College team. Then tickets to Colorado College hockey games, a VIP tour with the players, speaking to the team in the locker room after a win. Then Jack wowed Cooper with a pre-game ride on the Zamboni, and an autographed stick from Trevor Zegras when we were in Anaheim to watch the Colorado Avalanche play the Anaheim Ducks. Now Jack makes it a point to hang with Cooper when he’s in town – Dave and Busters, ice skating or Top Golf – any 11 year old’s dream.

On the way to Cooper’s book singing on Wednesday, I told him, “Cooper, this may be a weird comparison, but this is like a wedding. People from every part of your life are coming to support you. It is rare that this happens – that people from all parts your life – teachers from 6 years ago, family, friends, your dentist, neighbors, past nurses, all physically show up to celebrate you at a certain time and date.” It was definitely like my wedding – I stood and talked and hugged everyone for hours. We sold out of books (54)! Many people brought the books they bought on Amazon for Coop and Jack to sign. Velocity even had a paw print stamp for her own signature. Cooper and his quick wit had a good line for everyone. “To the mustard family” “Keep my mom busy” and even “I need food”.

A MASSIVE thank you for coming out to be with us at the book signing. Thank you for purchasing the book on Amazon, and leaving reviews. I’ve always believed that there is power and purpose in sharing Cooper’s journey and this book is the next step – funding Triumph Together to help other kids.

This summer is a blessing. No surgeries! Beach vacation! Cooper’s first time participating in the Dwarf Athletic Games where he got to play basketball, soccer, football and swim with kids his age and SIZE. He made new friends, and played his heart out for a week.

I finally have time to reflect, process and write this weekend while I’m in Massachusetts with Campbell for her hockey tournament. So now I need to go watch the other half of my heart live her best life.

Having all cylinders firing on good summer vibes has me Blown Away.

Rare Disease Day 2024

You know what today is? Leap Day, February 29th, the rarest day of the year, recognized as Rare Disease Day.

In years past I have been on the local news, sharing Cooper’s journey with the community:

February 28, 2015

In years past, we visited the Colorado State Capitol to advocate for those with Rare Diseases:

February 29, 2016

In years past I have been in DC, speaking with congresspeople about how to better serve those with rare diseases:

February 27, 2017
February 24, 2020

In years past, I’ve attended conferences to learn how to advocate for rare diseases. Later I helped lead advocates to Capitol Hill to do the same.

Rare Disease Week Conference – February 26, 2019

In years past I have been at Cooper’s school, doing activities and handing out cookies, raising awareness for Rare Disease Day.

February 28, 2018

Today I don’t have the energy to beat that drum. I hear the drumbeat – people around me on social media, my mom handing out cookies and raising awareness at church this morning, my memories popping up in what seems to be a million meaningful photos.

I feel guilty that I haven’t done a darn thing for it this year, so I guess here it is:

I’ve been at this for 10 years now. I’m done praying for a cure. Instead I pray for mercy. I pray for empathy. I pray for compassion and understanding. I pray that I can wholeheartedly embrace the present and lift Cooper up the way God intends me as Cooper’s mom. I pray that I am a good example of how to treat others.

I imagine I have a different filter on life than most people. I want to spread that filter to better help humanity, not just Cooper and those with rare diseases.

So yea, it started with Rare Disease Day and a bunch a statistics:

  • 70% of genetic rare diseases start in childhood
  • 5% of the population are currently affected by rare diseases (that’s 300 MILLION people worldwide living with a rare disease)
  • 1 in 10 Americans have a rare disease
  • There are over 6000 identified rare diseases
  • 72% of all rare diseases are genetic

Cooper is the face of those statistics. I’m making a difference NOW, with an impact bigger than our rare disease community. How about you?

Let’s start this way:

  • Embrace and include those with differences
  • Don’t stare, say hi instead
  • Don’t look away, say hi instead
  • Listen
  • Refrain from being judgmental
  • Smile

We are still funding Morquio research – answers and better treatments are out there and I hope that they are in time to help Cooper. But my time and energy is here with these awesome kids today.

Happy Birthday Cooper!

Reflecting on our journey and what you’ve taught us

I feel selfish sharing joy on social media about Cooper’s birthday the day after his birthday…. 9/11. Especially this year, it being the 20th anniversary. But in my world it’s the 9th anniversary of Cooper’s arrival. It’s 9 years since we were blessed with this baby boy. I’ve finally wrapped my head around his birthday and recent events.

Cooper had a wonderful birthday – friends, flag football, Chick-fil-a, cake, presents – everything a 9 year old would want. He was so happy, and my heart burst watching him buzz around giggling. Last year at this time, not only were visitors something we weren’t doing, but he was still recovering from hip, knee and ankle surgeries. He RAN and RAN and played on Friday without complaining of hip pain. This is exactly what the surgery addressed, and we are grateful he had the opportunity to do it. Looking back, this is probably his greatest birthday yet. He’s mobile and relatively pain free, he has kind and fun friends and I’m not hovering over him like a helicopter batting away hazardous activities for a kid with cervical compression. Now that the neck and hips are fixed, he’s clear to live his best life (within reason!).

Of course I can’t think of Cooper’s birthday and NOT think of what we didn’t know on that day in 2012 – the freight train of a diagnosis and journey that was coming at us.

Earlier this month I was asked to write a letter to my younger self, the day I got news about this boy:

Cooper and I in January 2014

2014 Chris,

You just received Cooper’s diagnosis. There is no cure. Describing this disease, the internet uses terrifying terms like “shortened lifespan”, “skeletal abnormalities” and “malformations”.

Your world is falling apart. And it will feel like that for a LONG time. It’s OK to be sad and mad. Confused. Scared. In this journey you’ll feel more and deeper than you ever thought possible. Talk to friends that want to listen, who are good listeners. Smile and nod to all the folks giving unsolicited advice, then steer clear of them. Your gut will tell you when you hear something that may help. Talk to a therapist. Keep talking to Brian. He’s your rock.

Please know it’s going to be OK. It doesn’t look like it now, because you are a linear thinker and you need to see how two get from point A to point B in everything you do, before you do it. You’re embarking on new way of life. Put your trust in God. You don’t know the overall plan – you never did, and you never will. The quicker you come to the that realization, the better your heart. Let go a bit. You will still be in charge of a shit ton of life and decisions, but let go of the overall plan. Let the plan be flexible. See where life takes Cooper and the family, embrace and adjust to every situation.

You will never again feel the way you did yesterday. You will be on a roller coaster of highs and lows forever. You’ll have a paradigm shift and find a new normal.

The news of Cooper’s diagnosis is going to change every part of your life. Some friends and family are not going to know how to respond. They don’t get it, they never will, and it’s OK. Don’t take it personally. (You’ll learn all about empathy and how that looks different to different people.) But please know that there are new, wonderful, life-changing friends to be made and compassionate people leading organizations that will lift Cooper and the family. Other friends and family will step up in ways you didn’t know you needed.

No one has your exact situation and there are few people in this world who will go through what you are going through. You’ll find those people and they will be part of your new tribe.

You have all the skills to take this head on. Organization, clear communication, and mama-bear compassion. Please take care of yourself. Fill your bucket – exercise regularly, get your nails done, spend time with your tribe and get away occasionally.

Welcome to your journey to a new, stronger you. God chose you for Cooper. Go live your truth.

Love,

2021 Chris

I wonder what I’ll be writing to the 2021 Chris in 2030?

But let’s deal with 2021. Yesterday Cooper asked me how to spell “disease”. I spelled it out for him and watched what he was Googling. “Rare Disease Flag Football”. He wants to play in a flag football league with kids like him – his size, his speed, his age, his agility. My heart sank. You don’t fit Cooper. Your friends, friend’s parents and family make you fit in – but out there – you don’t fit. At least for playing some sports. I’ll tell you where you do fit – your heart, your humor, your passion. There are places you fit naturally. For example we are excited to announce that Cooper will be a Patient Ambassador for Children’s Hospital Colorado in 2022-23! Did you hear him on the Dawgpod? He was natural there too.

Cooper, Smalls and Cappy recording episode 8 of the Dawgpod.

This weekend, Cooper, Velocity and I attended a fundraising event for Canine Companions. I loved watching Coop chat with volunteers and donors about his Service Dog Velocity. People seemed surprised when Cooper shared that he was 9 years old. But his conversation and sense of humor showed he was wise beyond his years. I made sure he knew how proud of him I am that he is such a fabulous ambassador for Canine Companions.

Cooper and Velocity hiding from raindrops under the picnic table

We’ll play your strengths and continue “Cooper-sizing” the things you want to do, Cooper. We love you. Happy birthday. Keep showing us the way.