You know when you are usually the driver and then one day, someone else drives and you get to ride shotgun and watch out the window and see the world from a whole new perspective? That’s where I’m at right now. Riding shotgun, looking at the same landscape through a foreign filter.
I’m at Children’s Hospital Colorado, sitting in the sports medicine clinic, watching Campbell march through her physical therapy program. Jumping up, over, left, right – one leg and then both legs. All the people here know me as Campbell’s mom. Yet 100 feet to the east, I’m Cooper’s mom. Coop and I have been overnight guests down the hall for sleep studies. 200 feet to the south, I’m again Cooper’s mom. We are here twice a year visiting audiology to adjust his hearing aides. Down one level I’m an infusion mom. Cooper and I checked in at the Center for Cancer and Blood Disorders one day every week for six years. On the first floor, I am the breakfast burrito order in the kitchen and again Cooper’s mom in Radiology. I’ve watched storms roll in from this fabulous viewpoint and taken timelapse videos similar to what you see during the weather update on the local news. I have a favorite spot in this parking lot, but I am not parked there today, because the handicap permit stays in the car door pocket when I’m here with Campbell.
I’m beyond grateful for being BOTH moms. It struck me as crazy this morning when I looked around and thought, THIS is what the sports medicine folks know about me – they know Campbell, and her hockey. They don’t know the volumes of medical records, infusions, surgeries and recoveries my other mom role has seen. They don’t know Cooper, his dog Velocity and our rare disease journey. I’m OK with that. The rare disease journey often defines me (and us as a family), so as I looked in on my life from what seemed to be somewhere else, it was hard to believe it was MY life. Sometimes it’s good to be someone else for a while. But just a short while, because this evening it’s back to parenting both kids as it’s High School Freshman orientation night for Cooper!
Summer is a rollercoaster for us. Extreme highs and lows. This month we embarked on an exhilarating (albeit exhausting) three-week road trip, including Cooper playing six different sports (football, pickleball, soccer, badminton, volleyball, and swimming) at the Dwarf Athletic Games, followed by family time on Orcas Island. Yet tomorrow (Tuesday), Cooper has another surgery. I think it’s his 9th? He’s 12 years old, and I’ve lost count of the number of times we’ve done this.
Tomorrow they’ll remove the “eight plates” in Cooper’s right knee. Should be simple. But nothing is simple when you live life with a condition that puts you in the high-risk anesthesia category.
Looking through photos from this week in past years snaps me out of the fun summertime vibe and into living with a rare disease reality:
Cooper recovering in a neck brace from C-Spine Decompression (was in brace for 8 months) Removing the cast from his hip, knees, and ankles surgery (Cooper was immobilized and in the cast for 7 weeks)Major back surgery
All of the above photos reflect the sucky parts of our summers. But after tomorrow’s surgery, Cooper looks forward to seeing the Savanah Bananas play in Denver and the following weekend, attending the 5th annual Rooting for Robert fundraiser! Cooper is counting the days until he sees Robert and his other friends with Morquio. He gets to play with kids who endure the same surgeries, same infusions, and similar frustrations in life. These relationships give Cooper friends on his journey who know what it’s like to have a weekly infusion, to be the smallest kid in class, to have anxiety before surgeries and painful recoveries.
So tonight I pray that tomorrow’s procedure is simple, it goes well, and we can quickly move on to the fun parts waiting on the other side.
Today is MPS Awareness Day. The day annually reminds me of how my son is defined. How I’m defined. How my family is defined. We have the boy with the rare disease. Lots of medical appointments. Surgeries. A four-hour infusion once a week. My son looks different.
When Cooper was first diagnosed 10 years ago, I embraced MPS Awareness Day. I advocated! Did interviews! Organized activities at the school! I asked everyone to wear purple and created photo collages of all our support.
MPS Awareness Day Collage, friends wearing purple for Cooper – 2015
Ten years into this journey, and I want to hide. I don’t want to talk about what makes Cooper different. I want everyone to see the stuff that’s INSIDE my kid that is like everyone else. He loves sports and Fortnite. Farting is hilarious. School is hard. He’s funny. He’s sweet. He loves his new bike – it’s just smaller than all his friends’ bikes.
I am so freakin’ tired. But this is my journey. We decided to stick our necks out and show what our life is like. I don’t regret it. It’s just harder some days.
So this is my challenge. Let’s redefine it. Redefine US. Let’s not talk about MPS and the shit sandwich it has handed to us. Let’s talk about moving the needle. Let’s make things better for Cooper and others like him.
Please share my ask – I ask for funding to install stepstools in the bathrooms at Children’s Hospital Colorado. Why are there no stepstools in restrooms at a children’s hospital? As Nate Bargatze (as George Washington) says, “Nobody knows.”
Let’s fix it. Let’s fix it for the little kids – and the big kids with short stature, like Cooper. Let’s make THIS Cooper’s legacy – giving, caring for others, making change. Here is the link to make that change:
If you are new to this rare disease journey and just found my post, please don’t let my rant disturb you. It’s gonna be hard. This is what’s hard for me, 10 years in.
—— Author takes 1.5 hour nap, has a glass of water and an apple, returns to writing ——
I’m feeling refreshed, but still emotional. My heart feels tight, and my soul is sad. So everything I said up top? It’s legit, I still don’t like today. “Hate” is a strong word, but that’s how I feel. Now it’s time to do what I can.
Am I wearing purple today? Yes. It was the outfit of the day as I attended Mass with my parents and aunts. Father’s intention for Mass was Cooper. Aunt Mary Ann, my mom, my dad, and I all wore our Cooper’s Troopers T-shirts. I cried on the way to mass. I knew the significance of the day and was dreading it. Events like this are like picking at a scab; it brings a flood of memories from the hardest time of my life – diagnosis.
And did I advocate today? Yes, to a classroom of kindergarteners whose innocence, sense of wonder, and excitement renewed my spirit. One of their favorite books is Super Cooper Wins the Stanley Cup, and they know that Cooper is Mrs. Kruse’s nephew. I had the opportunity to answer questions about Cooper, mainly about Cooper’s height, and the fact that the Colorado Avalanche are no longer in the playoffs. (Both disappointing.) I promised I’d bring Cooper back to meet them in a couple weeks. They are reading other books about how everyone is different and being different is OK. I couldn’t love the message more.
Let’s wrap up this rant. Fundraise for stepstools. Accept people who are different. The end.
Today as we were driving to Children’s Hospital Colorado for Cooper’s appointment, I had a moment on the highway. I was just here. A week ago. Driving with Cooper in the backseat. Last week we did this trek for a Patient Ambassador opportunity. Cooper was the orthopedic patient chosen to share his story (OK, I was the one who shared his story), and he pumped up the Orthopedic Department and jump-started their Courage Classic team, Bony Express. In related Courage Classic news, check out my cousin Monica’s Courage Classic page. She’s dedicating her ride to Cooper. She’ll ride MILES through the Rocky Mountains to help kids like Cooper. Throw her some donations and/or well wishes!
Today we are at Children’s Colorado for Cooper’s Neuropsych appointment. This is the fourth time he’s been evaluated by the Neuropsych team. As I explained to Cooper on the way here (right after the deja vu moment), this examination tells us about how his brain works and will help us determine what we can do at school and at home to help him.
But the real deja vu moment is the fact that we used to make this trip to the hospital EVERY WEEK for infusion. For years. Me, Coop, Velocity, and my backpack stuffed with electronics and food. Today, my backpack was stuffed with my computer, and two creative writing books. This afternoon, a prompt in the book What’s Behind the Blue Door by WriteGirl really got me thinking outside the box.
“Our moods can be like weather patterns inside us. Write about what the weather is like inside you right now.” hmmmmm……… My response:
Current Weather:
Calm or Unslettled?
Calm before the storm? Or recovering from the storm while the flood water receeds?
If Aunt Meg’s windchimes in Wakita are an indicator, what are they doing? (Reference from the 1996 Twister movie.) Swaying and tingling in the breeze or the scene after the tornado ripped through her home?
I don’t have a seven day forecast, let alone a 10 day outlook! Is there even an answer when you Google “weather in May for the Tippetts”? Nope. It’s just the little blue circle, spinning, spinning. Previous Mays have seen celebrations, preparing for surgery, traveling for MPS awareness, school mayhem, enjoying hockey and graduations. Mourning. There is no normal weather pattern for May.
But I think my current weather is calm. And the funny part is – my calm may resemble an F5 tornado to some, but I know it looks like a sunny spring day to others.
I loved writing the response by hand in my handwriting. I also enjoyed comparing my life to the weather. I think it’s fitting we live in Colorado, and the weather here can be CRAZY. So are my moods.
So anyway……… Being at the hospital again inspires me to take action. MPS Awareness Day (May 15) inspires me to take action. After Cooper’s two-year term as a patient ambassador for Children’s Hospital Colorado, I realized there is more work to be done. Cooper is built differently, and to utilize restroom sinks, he needs a boost.
Just a regular kid, getting a boost to wash his hands
Although I’m really good at balancing on one foot while holding a 40-pound 12-year-old on my other knee, I want to foster his independence. One way to do this is to make restroom sinks more accessible for people with short stature. Stepstools! And we’re starting at Children’s Hospital Colorado. Help us provide stepstools for kids and people with short stature in restrooms at Children’s Colorado. $750 provides a stepstool for one restroom. Our goal is to provide 35 stools. Visit Cooper’s fundraising page to make a difference.
So deja vu hits again. Here I am AGAIN, taking action for MPS Awareness Day, asking for donations, trying to make the world fit my kid, and telling you all about my mood/weather. Reporting live from Littleton, Colorado, Chris Tippett (non-meteorologist) signing off.
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.
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, 2017February 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.
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.
Rare Mom Life 