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”.
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:
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.)
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.
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.
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 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.
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…..
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!