Tag: fundraising

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.

Life Has Impeccable Timing

Today I held back tears as I watched Cooper walk into school. My 10 year old’s awkward gait and short stature really struck me as the sun accentuated his silhouette on the way to the door.

He’s now recovering from two surgeries – the spinal decompression and fusion in July as well as the hernia repair last week. As far as the hernia repair goes, Cooper can do whatever he feels up for, but the spinal fusion is still holding him back – no twisting of the spine/back allowed. Which means he still can’t play hockey, swing a baseball bat, or get into a basketball game with his buddies. He’s sad about missing his favorite sports. He tearfully wishes, “I just want to be like everyone else”. From my viewpoint, Cooper’s short stature is his biggest heartbreak. He wants to be on sports teams with his peers. No matter the size of his will and heart, he can’t keep up with competitive kids 18″ taller than him, and at this point, his spine isn’t ready for activity with other kids yet. Every day my heart breaks for him, but especially today.

An hour after drop off, this popped into my inbox from Children’s Hospital Colorado Foundation….

Yes, I have more than 400 unread personal emails. I just need a few moments to catch up on life…

But the article makes me cry. It’s beautiful, and it’s beautiful because it’s our story. (Click the title below to read it)

Child Life Specialists Help Cooper Feel at Home

And darn it – we won’t see those Child Life Specialists or any of our nurses this week. I don’t know when we’ll see them next. We’ve decided to move to home infusions. The Children’s Hospital Colorado system is so inundated with sick kids (lots of RSV), that Inpatient has taken over the Infusion Center space at the South campus hospital. So if we want to bring Velocity to a hospital’s Infusion Center, we need to go to North campus’s Infusion Center, an hour away.

Nope. I’m done.

We’re moving home. A nurse will come to our home and give Cooper his infusion there, hopefully after school. No more missing school. Definitely no more driving. Sweaty time won’t be confined to our room. These are all good things. But we’re going to miss the community at South campus. The community who wrapped their arms around us, stood us up and made us laugh for the last 5 years.

Moving to home infusions isn’t a simple task. From what I understand it’s an impressive amount of paperwork, approvals, insurance letters, and doctor’s responses. We hope to be set up for home infusion sometime in December.

So this is an ode to our medical community. We are eternally grateful. We love you and look forward to seeing you inside or outside the hospital very soon. And if we are outside the hospital, oh the fun you can have with Velocity!

Please consider donating to Children’s Hospital Colorado’s Child Life Services on behalf of Cooper and his friends at infusion. They’ve made a world of difference for Cooper and our family, and do so for every child they connect with.