Running on Empty

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.)

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.

The bottom of the hill

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.

The Truth Hurts

You know the saying, “if you don’t have something nice to say, don’t say anything at all?” Today I’m wishing the parents at the pool would have taught that gem to their children.

I’m nervous in new places with Cooper – the stares, questions, comments. Due to his rare disease, my sweet, funny, sporty 9-year-old has many skeletal deformities and is only 38” tall (among other issues). Today I figured I’d get in trouble with the lifeguards for letting what looks like my toddler play in the deep in the end of the pool without a parent in arm’s reach. But instead it was a comment Cooper overheard from a child that ended the pool day.

Cooper came hobbling from the pool with his imperfect gait, grabbed his towel and curled up on a lounge chair to cry. He didn’t want to tell me what happened. I assumed it had to do with a pool noodle and his big sister. Cooper mentioned something about “everyone was bullying him”. I initially dismissed it. “Oh, buddy, I’m sure no one meant to hurt your feelings”. He said that what he had heard was so terrible, he didn’t want to repeat it to me. Somehow I got it out of him. He had heard, “He’d be a better swimmer if his chest wasn’t that way”.

I don’t disagree – he’d be a better swimmer if his chest, ribs and spine weren’t deformed. He’d be a better swimmer if his arms didn’t have a limited range of motion. He’d be a better swimmer if he were the size and shape of a typical 9 year old.

But those words hurt. They hurt so bad Cooper declared he didn’t want to be in public anymore.

He recovered. He chatted and snacked and laughed with our friends who were at the pool with us. As we left I noticed two boys staring at Cooper as we walked out. I perked up and said “Hi guys! Have a great day!” I was hoping it would be enough of a distraction, but also an example – let’s use words to be kind.

Are you ready for more truth that hurts? Cooper needs surgery again this summer. Spinal decompression and fusion, this time in the thoracic spine. (For those counting, that’s surgery #6). The good news is that recovery for this is one of the “easiest” ones yet! 5 days in the hospital (AI Dupont in Wilmington, Delaware), no brace, no cast, probably no physical therapy. He’ll be up and running again in a month. But this truth is so hurtful that we aren’t telling Cooper until mid-July. Please be mindful of this in your interactions with us! We want him to be happy, carefree and have fun this first part of summer break – not to be anxious and sad.

3 summers ago, Cooper had spinal decompression and fusion on his cervical spine – had the neck brace until February!

So today’s story gets better. We went to watch Cooper’s friend play baseball, and ran into more of Cooper’s friends and stayed to watch them play too! Watching Cooper be surrounded by the kids he knows and loves – that’s what we needed to end the day. One of Cooper’s friend’s grandfathers approached and wanted to tell me how he loves how Cooper gives his ALL in everything he does. True, this man had seen Cooper play basketball and not clean his room…. But yes, this kid has a heart a million times the size of a typical 9 year old.

So we need to protect his heart. We’ll tell him about surgery when the time is right. Until then, we make plans in stealth mode. Flight to Philly, 2 weeks in a hotel, rental car, hopefully time with friends and family the weekend before surgery. I pray for peace for his heart (and ours) as we navigate these decisions. I pray for smooth surgery and recovery. I pray for smooth travel. We’ve “been there, done that” with this trip, so we know the hotel, the road to and from Wilmington and the shady spots at the Wilmington Blue Rocks baseball games. If you are motivated to help our travel, we could use Hilton points or Southwest miles. But really all we need is support. Lift up our little guy. In prayer. In spirit. Good vibes. Be an example of kindness to and for people who are different.

I suppose Cooper may find this blog some day. Cooper, everything we do for you is out of love. I think you see it that way anyway.

On a happy note, our hockey obsession started about 6 years ago, with a Little Tykes golf club as Cooper’s goalie stick.

Tunnel Vision

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 Disease Day, for the 8th time

Tomorrow is Rare Disease Day. A day we advocate and bring awareness to the over 7,000 documented rare diseases that plague us. Less than 5% of rare diseases have a treatment – not a CURE, an FDA approved treatment. 50% of rare disease patients are children. Think about that one. Why 50%? Because a lot don’t make it to adulthood. I’ve been spouting these facts the last day of February for eight years.

For past Rare Disease Days, mom has made cookies for the kids’ classes, we’ve organized people to wear purple. I’ve visited DC and ran back and forth on the Hill to congresspeople’s offices sharing our story and asking for legislation to help the rare disease population.

This year I will share our story virtually to our legislators. Cooper and I will participate in a special ceremony with BioMarin (the company that makes Cooper’s infusion drug, Vimizim). I will speak on behalf of rare disease caregivers with Claritas.

But I feel like I have failed a bit. I am tired. I have organized nothing for Cooper’s school. The adults who “need to know”, know all the things. They are the caretakers and advocates in that setting. They are my superheroes. I feel like the rest of the kids – the “newbies” – the younger kids – need some rare disease education. At least a “please don’t stare, just say hi” lecture. I will get there, and it won’t be under the guise of Rare Disease Day.

It will be a busy, exciting couple of days. But I’m tired of the excitement. My excitement this year entails the real rare disease experience. Waiting for doctors to review Cooper’s MRI results. Need a new MRI? Probably. Will it entail stress and anxiety? Yes. Will the results of this or the next MRI say he needs surgery? Maybe. In the meantime, we’ll be going to weekly infusion, crossing our fingers that his port works. Crossing our fingers that his hernia doesn’t hurt too bad. Because we can’t fix the port or the hernia until we figure out what the MRI says, and what needs to happen after that. It’s spaghetti of a flow chart – If… Then…. Yes…. No….. We just don’t know.

And that’s the big picture for our rare disease journey, now isn’t it? WE JUST DON’T KNOW. How severely will be be affected? (I’m guessing very) Will he grow anymore more? (I’m guessing no). What will his next surgery need to be? How will he be treated in Middle School? Is his medical anxiety going to spill over into other parts of his life? It’s spilling into other parts of mine.

So on this Rare Disease Day, I ask that you pray for the grace, patience and peace of mind that Rare Disease patients and families need to navigate their journeys. The journey is exhausting. The Tippetts are blessed to have extraordinary support from our community, every time we turn around. But some more patience and peace of mind on my end would go a long ways…..

WTH

What the Hell? I know life in general, let alone life with a child with a rare disease isn’t easy, but lately the shrug emoji is what I use most often to describe WTH is going on.

Two weeks ago Cooper’s surgery didn’t go as planned. As a matter of fact, it didn’t go. You can get details on CaringBridge, but after anesthesia, the surgical team stopped because the Neuromonitoring system lost signal on the right side of his body – possibly indicating spinal cord damage. It wasn’t bad, but it wasn’t good. We just opened a can of worms. And we have to muddle through all these slimy, entwined worms before we can move on. Cooper’s hernia bothers him daily – to the point of tears sometimes. His port is becoming harder to work with during infusion. The situation is becoming urgent.

The next step is to get an MRI on Cooper’s C-spine. Orders have been faxed in. I called and the radiology scheduler told me I had to go through a screening process to see if Cooper should go under anesthesia for the procedure. (Insert WTH and shrug emoji here.) I mentioned that Cooper did not need anesthesia for his MRI 3 weeks ago. I did NOT however tell him that the last time Cooper was under anesthesia he narrowly escaped paralyzation. Scheduler said, NO, the screening still needs to happen. I’m a rule follower. I know he needs to check the damn box before we get scheduled. So I was transferred to the “screening” number and left a message. 19 hours later and still no call back. The irony is that he shouldn’t go under anesthesia until we figure out what’s going on with his C-spine, hence the MRI! A growing circle of frustration right now. I’ll call again today.

In the mean time, let’s not forget about my oldest, the “unaffected sibling”. She’s growing up, she doesn’t want to talk with me about “stuff” unless it requires turning on the internet or ordering something on Amazon. I’m so stinking proud of her. Straight A’s, she gives her whole heart to hockey. She’s funny, and sweet (although I don’t get to witness that side much).

Campbell, #43. Watching her thrive here fills my soul.

My self care is struggling. STRESS EATING. There, now that it’s published, I’m accountable for it. Valentine’s Day treats didn’t help. But that’s over, they were delicious and I’m gracing myself. I’d like to work out again. I’ll get there – I threw out my back last week and with chiropractic help I’m getting back to normal. I want to plan a girls’ trip, I’d like to figure out family summer vacation plans, but my planning is paralyzed with fear until we get Cooper figured out. The next MRI is just a piece of the puzzle. It may lead to bigger things – bigger than the port and the hernia. It may lead to spine surgery. Which would mean another summer “vacation” in Delaware, and recovery at home, on the love sac, next to Velocity. Which is fine. We are blessed to have the right teams in place to help make decisions. I’m just a planner and this in between, waiting on checking the next box is torture for me.

I’m reading at night instead of scrolling on my phone. Check out “Present over Perfect”. It helps me slow down and connect with what is really important TO ME, not what is important to others. Which I desperately need. So in the vein of self-help, I’ll list what I’m grateful for: Velocity, home, my health, supportive family, community, out of this world friends, hockey, fun times, my job, modern medicine, garage door repair guys. You may ask, “Garage door repair guys?” Ask Brian about how I backed into the garage door. And now I’m slowing down? Perhaps I should have slowed down a while ago. But this is where I’m at, where we’re at. All I can do is make adjustments (chiropractor joke, hahaha), embrace the now and move forward.

Cooper and Velocity, at work, and at play

Update: after speaking with radiology (thank you Caylee at CHCO radiology who heard my cry for help), we are scheduled for an MRI on this Friday!

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.

Today Was Rough

And I can’t sleep.

While at infusion today I envisioned a blog post about how things are great, and I’d casually mention I broke my ankle three weeks ago playing floor hockey with Cooper. And he’s doing great, so excited to be on a baseball team this summer. And Campbell is happy, completely enveloped in ice hockey and loving it. And my ankle is healing. The walking boot has slowed me down, but with all the playoff hockey on, it’s OK to put my foot up for a while.

But I didn’t blog because I was too busy playing NHL ‘18 on the hospital’s Xbox with Cooper. Or watching him play. It’s his new favorite thing to do while at infusion all day, since he doesn’t have school work (or arguing about doing school work) to take up the time.

Check out the bottom left – Cooper created player #18, Cooper Tippett

It’s been a long time since we’ve had a rough day at infusion. But due to the butterfly needle sitting a bit weird in his medi-port today, we had a couple awful moments. Pressure on his port from trying to hep-lock him made him go through the roof. The pressure of the infusion all day was just fine – but the pump wouldn’t work with the syringe of heparin, which meant we had to hold him down, peel off the dressing (sticker covering the needle – always the worst part of infusion day), reposition the needle, push the heparin into his IV and then remove the needle and be done. As it’s always been, he’s so anxious about the process that the mere act of touching the needle and discussing what we needed to do made him so upset and frantic, he was literally sick to his stomach. So when we tried to comfort and distract him as our skilled, gracious and caring nurses maneuvered the needle, I had flashbacks of last summer when Cooper had his first cast removed, before his second hip, knee and ankle surgery. Last summer Coop screamed at the top of his lungs as the doctor started the saw – he thought they were starting surgery and didn’t realize/listen to the fact that they were only removing the cast. Screaming. Tears. “I can’t do this anymore!” “I don’t want to do this!” All again today.

Coop recovered very well. He held gauze over his blood spot as it dried up. His tears disappeared as he said goodbye and that he’d see everyone next week and play more NHL ‘18. We gathered our things and walked out of the hospital into the fresh air. That’s where Coop lost it. Just big tears as we stood on the sidewalk, waiting for Velocity to pee.

At home, Coop continued to feel better. He said he’s sad. I hear you buddy. I’m glad you’re not mad, or scared. I’m sad too.

So I’m heartbroken and I can’t sleep. Everyday I’m thankful there is a treatment for Cooper’s rare disease. I’m sad that Cooper has to live with it. I’m sad that Campbell has to live in his shadow. Campbell’s hockey gives her a place out of that shadow. Cooper’s upcoming YMCA baseball season will give him a place further from the medical rare disease space. But it will always loom near him. Like the fact that he’ll be playing baseball with 1st and 2nd graders, because they are the size of my 4th grader. He’ll make new friends with the kids, and he’ll be excited. But that takes care of this year. Next year he’ll be the same size, and the next year, and the next year. His problems and his differences won’t get easier or less noticeable. Just like today – we think we’ve got this infusion thing under control and we get a curve ball. Another reminder that I’m not really in charge, I really have no control over anything. It’s time to remind myself to put this in God’s hands and move on. Do what I can, and move on. Perhaps sleep.

Play Hard, Play Fair, Give Back

On the heels of MPS Awareness Day I am overwhelmed by the outpouring of support for Cooper, his situation and our journey. MPS Awareness day always sends me reeling. Usually I have a “wear purple!!” campaign and everyone posts photos of themselves wearing purple and wishing Cooper well. Instead of a purple campaign this year I was busy trying to generate interest in the MPS Society virtual gala and bidding on the auction items I had procured. Alas, the Gala and auction were a success and we toasted in celebration with a tiny group of vaxxed friends and family. But the excitement of the gala and MPS Awareness day is just one part of the past week.

This past Monday, the MPS Society organized virtual Hill visits to advocate on behalf of our MPS and ML affected individuals and families. We asked that our representatives and senators support newborn screening legislation and the STAT Act. We also asked our Senators to create a resolution to make May 15 National MPS Awareness Day. Senator Bennet’s office agreed to do the resolution!!! From what I understand, it’ll be presented to the Senate and a press release will be coming this week. HUGE WIN! So excited for a Colorado Senator to step up for us!

My mom, myself, Jamie, Jack and Mary (from Senator Bennet’s office) for the MPS Society Advocacy Day

Last weekend we were blessed to become a part of the Dawg Nation family. We all had the most wonderful night, being OUT, watching hockey, talking hockey, making new friends and finding old friends. We were surrounded by people lifting us up, celebrating and supporting Cooper. I felt like I was in a dream! We are excited to be involved and pay it forward with Dawg Nation.

Cooper with fellow Dawgs and Colorado Avalanche greats, Jan Hejda and Milan Hejduk

Of course these wonderful things happen and all the while sweet Velocity is by Cooper’s side. Everyday since February 14, 2020 she’s here. This expertly trained ball of white floof is part of our family, free of charge, as Cooper’s Service dog. Every week at infusion, she’s there. Every doctor appointment. Everyday I am reminded of the generosity and compassion of the staff, donors and volunteers behind Canine Companions.

Cooper and Velocity waiting to check in at the hospital for infusion.

I’ve mentioned it before, but I need to mention it again. The hospital staff is our adopted family. They see to it that Cooper has a great day, every infusion day. They’re his hockey team, his biggest supporters, and Velocity’s biggest fans. They are there with an ear to listen and empathic smile as I share our ups and downs. They’re along for this journey with us and they take care of the Tippetts. We leave every week after infusion and although we are relieved to go home after the long day, we look forward to being back with friends again next week. We are forever grateful for the compassionate care and buddies we have at Children’s Hospital Colorado.

School (noun): an institution for educating children. I am overjoyed that school for my kids means so much more. A safe place to be heard and seen. A place with friends, staff and curriculum they enjoy. An extension of home where the adults there are looking out for their wellbeing just as much as we do. Campbell is thriving at her “hockey school”. She’s made great friends, developed leaps and bounds as a hockey player, and is challenged academically. Of course the engineer in me is proud that math is her favorite subject! Cooper’s school continues to lift him up every day. His team is the best. I can’t put it any other way. Modify the bathroom for him? OK. Lower a swing? done. Need a HC accessible switch on the door? done. iPad robot in the classroom so that Cooper can attend school virtually while at infusion and recovering from surgery? sure! (We knew all about online school before COVID.) Special seating for each classroom/lunch situation? done. Speakers in the classroom or a speaker for the teacher so he can hear better? check. Customize the special class outings so he feels a part of the fun? yep. And then we’ll touch base and they’ll suggest ways it needs to be changed so it can better. Of course the IEP and Special Ed department are to thank, but this group goes above and beyond to make sure school is everything it can be for Cooper. I’m constantly full of joy and appreciation for Cooper’s experience as an elementary school kid.

Campbell and her classmates celebrating after her goal

So what am I getting at? My heart is so full. Our bucket is so full. We are living life to the fullest, and we need to give back. I know I do things to give back. But I feel I need to do more. Visit my new page, Extraordinary Organizations. Donate your time, talent or cold hard cash to these organizations that have lifted us up, and do so for countless other families as well. Share their missions. In the meantime, I’m going to carve more time out of my day to be of help where I can.

Thank you for lifting us up. For reading my rants. For sharing our story. My new mission is Dawg Nation’s motto – Play Hard, Play Fair, Give Back.