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**
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.
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.
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.
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).
When I feel overwhelmed, I just want to shut down. Can’t keep my eyes open. Its hard to breathe deep and I want to hide in my bed. This feeling scares me, because my usual response to stress is to jump into action. But not with overwhelm. We are only 10 days into this crazy month. The end of May means the end of school, end of Campbell’s hockey, many less commitments, projects, appointments and activities. Perhaps being overwhelmed this early is going to give me perspective for the rest of the month.
I’m fine. Everything is fine. Just sharing with y’all, because I know some of us are in the same boat. I’m here with a life vest, and an afternoon caffeinated beverage.
We’ve had a whirlwind of fun in our family this week.
First, an exciting (albeit frigid) trip to Toronto to cheer on 13-year-old Campbell and her hockey team as they competed in the International Silver Stick Tournament. We enjoyed the hockey hall of fame, ate poutine, fell in love with Tim Horton’s, visited Niagara Falls, and did each step in the warm embrace of our hockey family. Oh, and we watched hockey. We cheered with every ounce of our soul. As parents, I argue that we experience more stress watching than the girls do playing hockey – although I’m sure they burn more calories. We want so badly for each of them to succeed, to be proud, to win. I swear I have a new heart condition from being a competitive hockey parent. Which is competitive, the hockey or the parent? I’ll let you decide.
The day after our return (Tuesday), Cooper, Velocity and I made the trek to Fort Collins, visiting Colorado State University’s chapter of Canine of Companions, Collar Scholars. Collar Scholars are CSU students who raise and train puppies for Canine Companions. It was Cooper and I’s first time visiting a Collar Scholars meeting, but guess what? Velocity was raised at CSU, so this was a return to her alma mater. She was a rock star, on her best behavior. I shared our journey – Cooper’s rare disease, his surgeries, appointments, infusions, struggles, and why he qualifies for a service dog. Cooper spoke to a room full of college students as if he had been practicing for it for years. We thoroughly enjoyed our visit with both the people and the puppies.
I guess we could say it’s Cooper’s first college visit? Check it out:
Wednesday afternoon, Cooper and I visited DJs Slacker and Steve at Alice 105.9, to participate in the Alice Cares for Kids Radiothon benefiting Children’s Hospital Colorado.
Coop and I had met with them previously via Zoom, sharing our entire story. An audio montage was created from the Zoom call. I had the opportunity to listen to the montage prior to Wednesday’s visit, and I’m glad I did. I cried big, gut-wrenching sobs. Every time I share our story, it’s like picking at a scab. Remembering all of the appointments, the heartbreak, the fear and the diagnosis digs deep into the past, into my heart, into my head. Hearing our montage, the scab came off – way before it was healed. (It’ll never heal.) So Wednesday night we visited for the on-air interview. Prior to the interview, they played the montage. I’ll let you listen. It was a really fun and special event.
Montage of our journey:
Live interview:
ps. I’m sorry Cooper said he doesn’t think the Avalanche will win the Cup this year. I just hope we aren’t run out of town for his comments. LOL
So, as you can imagine, I’m a bit drained. The week has had intense emotional swings that have taken a t toll. I occasionally nap during the day. I’m exercising, drinking water and making sure I fuel my body appropriately. I am held tight by those who lift me up, but my soul is tired.
My task is not complete. My task will never be complete. Our journey won’t be hidden, forgotten or swept under the rug as “a bummer”. I share our journey to educate, to teach empathy, to embrace others with a similar path.
The last day of February is Rare Disease Day. I’ll participate in Zoom calls with our legislators and share our story again. I’ll ask for legislation that will help people with rare diseases. We’ll “celebrate” it at Cooper’s school and raise awareness there. I’ll draw energy from the excitement and then crash. And then do it all again (while cheering on Campbell, because I’m her mama too.)
This morning Campbell and I took the dogs on a walk. Our sweet old mutt, Roscoe, is almost 14 years old. His hearing is going and his back legs don’t work as well as they used to. But he loves going on walks and barking at anyone who walks by our house. I feel like he’s living on borrowed time.
Our dog walk route is down the street, turn left, down Dutch Creek to the park at the end of the street. At the end of the street today Roscoe‘s back legs gave out. Repeatedly. He wasn’t in pain, but it was heartbreaking to watch him try to get up again and again. He managed to remind those back legs how to walk again and we made it home (very slowly), but at the bottom of the hill, the floodgates opened.
I wept. Watching Roscoe was the pin that poked the balloon. I cried about him, but then everything came to the surface. I sobbed about Cooper’s surgery (I don’t want him to need it. I don’t want him to go through it. I don’t want him to have the anxiety and the recovery.) I sobbed about how I don’t want to go camping, and that ruins my family’s plans. (I don’t want to tweak my back. I’m scared of the uneven surfaces and my partially broken ankle. I am crushed that this makes me sound old and broken.) I sobbed about Johanna’s red Subaru and how it’s totaled. (Here’s the lunatic part – just this morning I saw Johanna’s post about the Subaru. Am I attached to the Subaru? No. Last time I was in the Subaru? 7 years ago. But I am channeling all of the emotions today and I feel you Johanna.) I cried about it all. And more.
How ironic is that? At the bottom of the hill, needing to climb all the way up. One foot in front of the other, I cried all the way home.
I try to be a robot – strong, doing all the things correctly. But today I am human.
I have so many emotions after my last blog post. It’s hard to put myself out there. Sharing our experience is the easy part – it’s processing the events – after they happen, again when writing, then again in conversations that takes a lot of energy. I bottle up the feelings that comes with processing. But the emotion is real and needs to happen to get me to the next step.
I am grateful for my community. Everyone who reads my ramblings, reaches out, makes me smile, hugs me, assists in our journey. Thank you.
Although we have this hill to climb, I know we have a support team. In my mind, our team looks like the support car that follows a Tour De France rider. But ours is a like a clown car, because there are so many people crammed in there. ♥️
Cover photo (Dutch Creek with rocks and blue sky) courtesy of Campbell.
On this roller coaster of rare disease life, I’m embarking on a long dark tunnel. We just came up a huge hill and had fun spins and splashes, but it’s getting dark and scary again.
Monday Cooper will be re-doing his MRI – this time with anti-anxiety meds, and a time slot meant for sedation, so we won’t be rushed. Later this week he’ll have a dentist appointment (hello anxiety) where he’ll hopefully be cooperative enough to let them clean his teeth and peek at the baby tooth that has a cavity/infection that’s been painful. Last but not least, he’ll have infusion on Thursday. The “exciting” part about infusion this week is that afterwards (while his port is still accessed), he’ll have a dye study. The dye study should show us what’s going on with his port and why it’s so hard to give him his medicine during infusion, usually requiring TPA (what I refer to as “medical Draino”).
How’s Cooper handling it all? Eh, not great. I know he’s nervous about the MRI (they are uncomfortable and last time he was so upset he had body shaking sobs during it, making the MRI unreadable). I can be happy and supportive and the most optimistic crazy person you’ve ever seen for the appointment, but it’s the results of the MRI that have me on the edge of my seat. I’m fulling expecting to spend this summer in some sort of “surgery mode” for him, so any results requiring less than major surgery will be a pleasant surprise. The dentist appointment could go either way. I’ve seen him get his teeth cleaned like a champ, and I’ve seen him loose his cool – so it’s a toss up. Infusion will be fine, but new things are always scary, so the dye study afterwards will have him anxious.
In the meantime, we’ve chosen to live life to the fullest. Spring Break = beach, hockey games and skiing.
Spring break fun at Newport Beach
For the last 10 days I’ve been putting off the reality of the upcoming appointments, but on the last night of spring break, they are weighing on my heart. I’m restless and depressed. I don’t want to do this anymore. I don’t want more appointments pointing to more problems. I don’t want more unknowns. I don’t want Cooper to miss school. I don’t want him to be sad and anxious.
I’m trying to make up for next week in advance – let Coop stay up late watching TV with me, and crawl into my bed in the middle of the night. Then I watch him sleep and I pray that we are making the best decisions for him, and that he is as happy as he can be. And in trying to make him happy, is there a cost to the rest of the family? Campbell feeling left out or that she has more rules than Cooper does? Brian doesn’t sleep well when Cooper crawls in our bed. I know I certainly don’t. I guess this is how a special needs family works around the special kiddo – it’s a balancing act. This evening’s balancing act is me identifying and expressing my emotions in writing while watching Cooper sleep – sideways in the middle of the king bed (a very fitting analogy for this moment).
I believe Cooper doesn’t intend to have our life revolve around his needs, but it does…
For this part of our balancing act, I pray for patience, grace, bravery and strength for both Cooper and I.
Rare Mom Life 