Enough. Hold Please.

I don’t have words to convey the overwhelmingly weary feeling I’m carrying around. My arms, legs, eyelids, and heart are heavy. My brain is foggy. I want to sit in quiet for hours. No TV, no music, no scrolling, no talking.

The summer has wrapped up, and I’ve had enough. Enough travel, adventure, hockey, road trips, friends and family. Enough bucket fillers to overflow my orange 5-gallon Home Depot bucket of emotions. I feel like a puddle of mercury. I couldn’t possibly feel another emotion. I am exhausted, but content.

Coop had an “easy” surgery, followed by his first day back at school, then wrapped himself in the camaraderie and excitement of being surrounded by the Morquio community at the Rooting for Robert gala last month. Campbell is launching into her sophomore year in high school, holding herself to the highest academic standards while endlessly training at the rink and at home for her hockey season. The kids are thriving – what every mom hopes for.

The combination of finding deep belonging in the Rooting for Robert community while watching my firstborn take bigger steps to leave the nest has my heart in a tangled mess.

I am disappointed that I don’t have the energy or the words to describe our time with new and old friends in Louisville, brought together by the Rooting for Robert gala. All I can do is share a few photos, the joy in them speak for themselves.

Then another piece of my heart is doing her own thing on the ice, and with every college visit, hockey game and homework assignment, she spreads her wings a little more.

So don’t mind me, I’m soaking in all the moments while I can, and it’s a lot to hold.

**Cover photo with tulips by Rick Moore at Heavenly photos**

Summer isn’t all fun and games

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)**

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.

I hate today

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:

Stepstools for CHCO

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.

deja vu

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.

Beach Birds

I got away this week. 2 nights, beachfront condo – just me and my thoughts. Solo walks on the beach. Sleeping in (WHY AM I AWAKE AT 6 AM??) I am blessed to have this opportunity.

Northern California beach – unforgiving onshore breeze, not much sun, not hot, adjacent to the Monterey protected area so there are dark sky requirements and it’s QUIET. Perfect.

I am not a fan of being IN the ocean. I really to like to by near it, hear it and watch it. This week I was enthralled by the birds. I LOVE THE SANDERLINGS!! They run back and forth and back and forth chasing the waves out to peck in the sand after the water is gone only to run away when the wave comes back. They are always in a flock of many birds, are always moving. They are cute. Their legs move so fast, it’s comical.

Sanderlings

There are bigger birds, with long beaks. I think they are sandpipers. They don’t run around like the sanderlings. They have long legs and don’t mind the ocean washing over their feet. I saw a sandpiper with only one leg. He hopped around when he didn’t fly. I admire him – one of the guys, doing the same thing, just looking and operating a little different.

There are a few gulls, and then the big, majestic yet awkward pelicans. When I see them flying up the coast in formation, I hear low flying war airplane sounds in my head.

Pelicans

They are on a mission. They have very little wasted movement. And they are so far up in the sky, they see everything – almost all-knowing.

As I watched the Sanderlings, I couldn’t help but compare myself to them. Driving back and forth, multitasking, doing all the parts of life, back and forth. Sticking my nose in everywhere. Flying to a new location (new stage of life) and doing the same thing all over again – back and forth, back and forth, sticking my nose in new sand. Always moving.

Do I have a choice of which type of bird I am? Which one would I like to be? A pelican seems much more peaceful. On my last walk this morning, I saw a dead pelican on the beach. It really shook me. This large bird, all distorted and out of place. Brought me back to the reality that everyone/ everything/ every bird has their own troubles. I’m a Sanderling, constantly in motion. It’s who I am and that’s fine. I can’t change it. I have my troubles, and I’ll keep running back and forth attending to all the things.

On my first walk on the beach this week I noticed a teenager chasing away a gull, a boy playing baseball with his dad and a couple enjoying a walk, hand in hand. It made me miss my family, but I’m happy to spend a few quiet moments to myself to slow down, process and feel gratitude for what waits for me at home.

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.

View this post on Instagram

A post shared by Cooper Tippett (@me_and_velocity)

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:

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

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.

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.

All the feels for Valentine’s Day

February 14th means a lot to me.

4 years ago today, we were blessed to graduate from Team Training with Velocity, Cooper’s Service dog from Canine Companions.

Service Dog Velocity and Cooper on their match day, Feb 2020

10 years ago today, VIMIZIM was approved by the FDA for the treatment of MPS IVA. Cooper was diagnosed with MPS IVA in January of 2014, so we’ve been strapped into this rare disease roller coaster for a decade now.

Velocity is the first household member to wake every morning. This morning she waited until she heard my alarm to greet me at my bedroom door. I was so excited to rub that wiggly, tail-wagging butt this morning. It’s the anniversary of our “gotcha day”, and every day I am more thankful for her sweet soul, what she’s done (and continues to do) for Cooper and the joy she brings to the whole family.

Remembering our first plane ride home with Velocity, I started thinking about all the other plane rides she’s had – to all the surgeries, as well as a couple vacations and hockey tournaments. I remember being so concerned for her first few plane rides – did she need to pee? Is she comfortable? Is she disturbing anyone? Now she’s the least of my worries and by far the easiest member of our family to travel with.

Velocity’s first plane ride with us, Feb 2020

Thinking about all that Velocity has seen Cooper go through – four surgeries, hundreds of infusions, dozens of appointments. Makes me wonder what else she’ll see – what else we’ll see – what else Cooper will endure. We don’t know. We have ideas, but we don’t know. That’s the nature of this roller coaster.

Cooper and Velocity after Cooper’s surgery, July 2022

I’d like to say I’m a pro at this roller coaster by now. But I’m not. My stomach rolls when there is talk of possible medical interventions. I cry watching friends navigate their rare disease journies. I’ve learned that sharing our journey is therapeutic for me and connects us in ways I didn’t know we needed.

Today I am grateful for where we’re at. It’s been hard. I pray we can continue this roller coaster with the smiles, prayer and good fortune we’ve had thus far.

July 2022, enjoying a Wilmington Blue Rocks game before Cooper’s surgery

I can’t even sum up my feelings in a title

Today I left Cooper’s doctor appointment feeling devastated. I choked back tears as I dropped Coop at school, four and a half hours late. Why? WTH? Can we please get a frickin’ break?

In my head, today’s regular 6 month check in was going to be easy – check the boxes. Hug the specialists who have been taking care of us for nine years. Surgery recovery is complete and Cooper is feeling good! We’ve been seeing specialists this summer and have more visits upcoming. I think we are on top of it!

But this disease doesn’t stop. There is no respite.

Time to beef up Occupational Therapy and Physical Therapy. Have the Physical Therapist fit Coop for devices.
Too long since we’ve seen ENT – especially with Cooper’s new “loud breathing” I’ve been hearing.
Then there was discussion regarding a surgery that MAY be far in the future to help the breathing. Not going there yet, but we’ve scratched the surface, on the same day Coop complained the edges of his scars from July’s surgery are itchy with scab and stitches still there.
Hard discussions about mental health.
Notes to watch for symptoms of spinal compression. Imagine hearing this after you’ve been through two spinal decompression surgeries already.
Sleep study needs to be scheduled.
Do it all sooner rather than later.
Reminders to a picky eater and his mother to eat fruits and veggies. How did I not notice he’s dropped weight?

It is hard to process. It’s just so much. Relentless. As always, I will make lists and phone calls and we will drive all over to get the things done – to get us closer to the next step. I always thought the end of the list got us to a break, but it only brings up the next thing. It just sucks. And this is how I process it.

Thanks for hearing me out.

So what do we do next? Our friend Marty always says “There are no coincidences”, and I believe him. We happen to be going to Louisville, KY this weekend for the Rooting for Robert gala. But even bigger, Cooper gets to meet Robert, a little boy on the same Morquio journey we’re on. And our friend Colin will be there too – he’s fighting the same battles Coop and Robert do. Three rare little boys, one gala, hundreds of people lifting them up – raising money for Morquio research. Building community. So it’s no coincidence that after a hard appointment we get to gather with our community on Friday. And on Saturday, we’ll let the boys be “normal” kids again when we visit the Louisville Slugger museum. And they can be boys. No infusion, no surgery, no appointments, just normal boys checking out baseball bats. Sunday will be yet more fun – home again for Cooper’s birthday party, with a Savannah Banana’s theme.

I pray that one day Cooper and all those affected by Morquio will feel “normal”. I know Cooper wishes for it daily.

If you are interested in a great cause, check out Rooting for Robert.

You’ll find a familiar face in their video…

Hiding

Today, May 15th, is MPS Awareness Day.

Ever since Cooper was diagnosed with MPS IVA , this is a day I’d advertise on social media, at school, at the hospital. I’d ask friends and family to wear purple and post photos of all the purple. We did “Planks for MPS”, an ice bucket challenge, I jumped in a pool while wearing a dress. We’ve made boats and paper airplanes. Mom has made cookies for Cooper to share at school. Teachers have gone out of their way to recognize the day and wrap Cooper in support.

The day is a repeating appointment in my calendar. It’s there every year. I knew it was coming. Did I do anything? Plan anything? No. I’m wearing a purple shirt only because it’s one of my favorite workout shirts.

I don’t know if I’m hiding or fighting back. I don’t want Cooper and I to be defined by MPS anymore. It defines us enough. It has a grip on us – weekly infusions, yearly surgeries, what seems like a million extra appointments. Constant heartache as we navigate our son’s life with never ending challenges.

Every fifth grader at Cooper’s school gets to do a Ted Talk. the first line of Coopers talk is “ It’s hard being a 3 foot tall 5th grader” watch the rest of it here:

It’s hard being a 3 foot tall 5th grader

So it appears this is my MPS Awareness Day campaign. MPS sucks. Lift those affected by MPS and all rare diseases with your support. Your humor, shoulders to cry on, special moments of joy. Donate to research and support causes (Rooting for Robert or MPS Society) if you want and can. Pray for grace, peace and patience for the families.

I’m not donning the purple this year. I need to change out of this purple workout shirt and get to Cooper’s school. He has rehearsal for the talent show in 35 minutes, and I’m going to put my energy into that (and moving his 8 piece drum set upstairs, to the car and into school).