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.
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.