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:
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.
I’ve been living by a new motto lately, “If it’s not a hell YES, it’s a hell NO.” It’s been liberating.
Then last month I was asked if I’d like to represent the MPS IVA community at the University of Minnesota Medical School’s Mucopolysaccharidosis Newborn Screening Meeting, providing perspective on what a newborn screen would have meant regarding an early diagnosis for Cooper.
Do I want to travel and spend a few days in Minneapolis?
Do I want to catch up on work at night while I listen to Newborn Screening topics during the day?
Do I want to watch my family coordinate what appears to be more complicated than the moon landing to cover for me while I’m gone?
Do I want to re-live Cooper’s diagnosis, feel all the things, share my feelings and experience with a room (and internet) full of people?
Not really. But is it important? Yes. I’m here.
Tomorrow is my 15 minutes of fame. So, what would having known Cooper has MPS IVA at a few days after he was born (instead of at 16 months of age) have meant?
connecting with the right folks (National MPS Society, Children’s Hospital Colorado) earlier
less symptoms for Cooper (medicine would have had 16 more months to work)
no diagnostic odyssey
Cooper had symptoms at birth, but we and his pediatrician didn’t know the symptoms to look for. Cooper was diagnosed relatively early. I know of other MPS IVA families that have had a horrific journey finding the correct diagnosis, and in the meantime, missing out on years of treatment. MPS does irreversible damage. Treatment slows/stops the damage – it can’t reverse it. So if there is treatment, and a way to diagnosis it, let’s know about it right away, OK?
While in Minneapolis, I figured I’d treat myself to the Minnesota Wild hockey game. I’ve been to NHL games by myself in new cities before – this would be fun and exciting! I love ice hockey! But after the last session today, I came back to the hotel. I took off my shoes and flopped on the bed. I took a nap. I watched reruns of The Office. I played a game on my phone. I lounged on the bed for four hours. I beat myself up for not checking in on work, not participating in the happy hour, and not going to the Wild game. But I was reminded I needed to relax. I deserve it. So my pampering today looks like a hotel room with the remote all to myself. Not the beach or spa I have in my mind when I think of “getting away”.
After my lavish downtime this evening, I put my shoes on, found dinner and drinks in the hotel bar, and watched the Colorado Avalanche game while I caught up on work.
Tomorrow I’ll share my experience alongside others in our situation – we have a treatment but had to find the diagnosis on our own. Then I’ll go home and participate in what I call “re-entry”. Just like a spacecraft coming back to Earth with astronauts, I’ll jump back in to family life.
Cooper called me while I was at dinner tonight. He needed to know where the note cards were. He is working on his Ted Talk that every 5th grader at his school does. Cooper’s first line is, “It’s hard being a 3-foot-tall fifth grader”. He goes on to talk about his disease, all his surgeries and how he feels when people gawk at him. Our short conversation made me realize this mission to Minneapolis was a “hell yes”.
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)
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 afterschool. 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!
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.
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).
For this part of our balancing act, I pray for patience, grace, bravery and strength for both Cooper and I.
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).
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.
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!
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:
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.
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.
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.
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.
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.
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.
On infusion days, Cooper can be found WIDE AWAKE long after his bed time. He’s happy and chatty. Tonight, he couldn’t fall asleep in his bed, so he grabbed his book and crawled into our bed to read until I could join him. He finally wound down and closed his eyes. As I watch him peacefully sleep after a long day at the hospital, with Rare Disease Day quickly approaching, my heart had some things to say…
Thank you Lord for this journey with Cooper.
For the empathy it continues to teach me.
For finding my voice as an advocate for Cooper, and figuring out how to advocate for myself at the same time.
For the compassion I have grown to have for people in all walks of life.
For the angels on earth we meet along the way – those who lift us up.
Please give me strength to fight the battles.
Please give me wisdom to know which battles to fight.
Please give me grace to be the mother I need to be for both Cooper and Campbell.
Please give me the energy, words and actions to pay it forward and adequately recognize and thank those angels among us.
Thank you for this journey. Please continue to show us the way.