Celebrating Cooper’s Diagnosis Anniversary with Dawg Nation

Six years. SIX. It’s been six years since we were handed Cooper’s diagnosis. This morning I watched Cooper’s uneven, labored gait as he walked away from me and I had a sudden twinge of sadness. The scar from his spinal decompression surgery two summers ago glared at me from the back of his neck. I watched my sweet eight year old start toward the steps. Today it’s too much work to walk down them, so he sits down and bumps down each one on his butt. He’s wearing Christmas PJs that fit a normal four year old. He has become more mature with his questions and thoughts, and his face looks older. But he’ll always be this size. When I pick Cooper up from school and see his third grade classmates, the kids are giant! It’s now VERY apparent Cooper is different. I think the difference affects me more than him, and I hope it stays that way. He’s doing age appropriate things (and that’s what’s important), I just don’t want him to ever outgrow snuggles with mama.

We’ve been hunkering down and masking up during the pandemic. Theoretically, Cooper is at an elevated risk of serious complications, should he catch COVID. We’ve mindfully chosen how and where we interact and are walking the line of enough interaction to keep everyone sane, while staying safe. The one thing that hasn’t changed is infusions at Children’s Hospital Colorado (CHCO) – we still go once a week. We check in at 9 AM and leave by 4 PM. A couple weeks ago, we walked in and it was like the scene from the 80’s TV show, “Cheers” – NORM! Everyone at the screening desk, the volunteers at check in and admissions staff all lit up and greeted us when Coop walked in. Our weekly hospital visits haven’t changed, it’s been our one place of normalcy. Isn’t that crazy? Cooper’s rare disease treatment is the one shred of familiarity during the quarantine. I’ll take it. We cherish our CHCO family. Last week we were lucky to be at infusion the day that CHCO staff arranged a ZOOM call with Colorado College (CC) hockey players and CHCO patients. Coop and one other little boy got to play a word game with the CC players, then do some Q and A. Cooper was beaming, laughing, being a ham! He sat up straight and participated and was so stickin’ happy. The players were animated, kind and fun. I profusely thanked the CHCO staff and CC players for their time and involvement in such a fabulous activity. One of the CC players asked a friend on the Colorado Avalanche to record a video for Coop. The CHCO staff sent it to me, and I nearly died. The Av said that he and the Av’s are all behind Coop, praying for him and rooting for him. Queue the big mama tears. Coop was starstruck. We were exposed to a bit of what the hockey family was like two years ago when we got to spend time with the University of Denver hockey players, but we’re experiencing this hockey family more and more now, and they are lifting us up.

In October, Cooper tried sled hockey for the first time at an event put on by Aces Hockey Academy (where Campbell attends fifth grade) and Colorado Sled Hockey. Although his arms weren’t strong enough to pull him, Cooper quickly made friends and the hockey family stepped up to push him around, make sure he had a great time, and help him succeed at playing sled hockey.

And here our hockey family grows again. Dawg Nation (a non-profit providing hockey families assistance and opportunities during times of crisis) has reached out and wants to provide special fun and support for Cooper and our family. We are humbled and honored to the recipient of their time, talent and our community’s generosity. Visit Cooper’s Dawg Nation page to help. Feel free to share the Dawg Nation link or this blog link if you are so moved.

Flashback to six years ago – a devastating diagnosis for our 16 month old son. We’ve seen five surgeries and recoveries. We know how to handle weekly infusions. We move through the world and change it to accommodate Coop. Today we deal with the physical and emotional challenges as they come. I think this is the first year I can say that. Before now, I’ve been so concerned about what IS to come. Time for a new mindset. Now we aim to celebrate every day, and live in the now. We are grateful to Dawg Nation for our upcoming celebration! January 30 (diagnosis day) usually brings me such sadness, I am delighted to have fun news to share on this year’s diagnosis anniversary. Cheers to our hockey family!

Seeking Stillness

I find myself seeking stillness recently. A lack of things. A lack of motion. A lack of noise. A lack of doing. A lack of thinking? Or am I seeking the stillness to allow thought?

I am sooooooo tired. Like drop the kids off at school, jar myself awake as I drive home, crawl back into bed for a two hour nap – tired. (Mind you I’m in bed by 10pm on a nightly basis) I make sure I don’t have anything pressing for work, then I set my alarm for noon and doze off. It doesn’t take me 5 minutes. It’s not like I want to surf Facebook or play a video game. I need to shut my eyes. I have SO MANY things I need to tend to, all piled up in my inbox. It’s not even neatly sorted. The number of things I need to catch up on and the breadth of emails I need to address to get everything figured out is appalling. Apparently, I’m currently operating on the “whoever screams the loudest gets addressed” system.

The fact that I feel the need to sleep when I have so much piled up makes me realize something has shifted – perhaps I don’t care? I can’t care about it all. I cared about it ALL for so long. And I can’t anymore. Is my body shifting into self-preservation mode? Or am I truly just exhausted after the most difficult year of my life?

Being “mom” makes me (and so many others) the funnel for my family’s health, social, school, and church related things. Let’s try to cram Mom’s work, volunteer duties, exercise, typical chores and me-time in the funnel too. But WHAT?? There is a pandemic and now everything is done virtually? What’s the email address for all things virtual at my house? Mom@PerhapsThisIsTooMuch.com The funnel is overflowing.

Today is infusion day for Cooper which means we are at the hospital for 6 or 7 hours. We bring Coop’s school stuff, my computer and some gaming devices. School work is complete. But instead of digging into my personal inbox I find myself staring out the window, taking in the scenery. Making up a story about the Pest Control guy by the Central Utility Plant and what he orders at Chic-Fil-A. Watching the oversized ground hogs and wondering if they are the pests. Wondering where the hawks are, and when will it snow? Maybe I’ll ask for a warm blanket and nap next.

I don’t know where the “Go getter Chris” is, but if you see her, will you send her home? The dazed and confused mom there needs a boost.

Come cope with me – but bring a clean pair of underwear

I have started a blog entry about how frustrating all the different parts of pandemic life are – followed by the things I am thankful for. I may still publish that one, but I feel I’d be preaching to the choir. Instead, let me regale you with stories of this morning, and things that I feel only happen to me. Laughing at my misfortune (and possibly poor decisions) is how I cope. Come cope with me.

My usually sweet 10 year old Campbell is super sassy lately. Defiant. Not cooperating. She can be a jerk when she wants to, and it just makes it suckier for her and me and everyone living in our Quarantine quarters. This morning, instead of unleashing hell on her, I calmly asked her (for the third time) to pick up her room and make her bed, reminding her that this cleanup is to happen EVERY morning. Infuriated with the continued attitude and lack of positive response, I went to my room, shut the door and proceeded to scream at the top of my lungs. My personal trainers would have been proud! I used all the muscles in my body. Unfortunately the muscle that holds the pee in didn’t get the memo. (After two kids, that muscle has essentially given me the middle finger.) I was still mad, so I yelled again. I was amazed that there was more pee! Ug. My throat was sore from yelling, and I was hoping the neighbors weren’t going to call for help. So I changed my pants and moved on with the day, hoping that my little temper tantrum would clear my head and I could go be the loving, helpful mother my kids need.

The 10 year old sass continued – it may have even amplified! Now I am mad that she hadn’t changed her attitude and that somehow the husband is needed elsewhere, and I see work emails piling up that I cannot attend to until the school day is over and now the seven year old is bossing me around as if I am a terrible waitress, while he sits at MY desk, using MY computer, demanding an egg sandwich.

Again, I choose the high road. Make the snacks, deliver them lovingly and go to the basement for a quick walk on the treadmill while both kids are in their live meetings for school. The fast walking feels good. I wonder if I can get a full mile in before I am needed to redirect attention, help with technology, make a snack or break up a fight? Eric Church singing loud in my ears transports me to the time we saw his show at Red Rocks. “Let’s get this done!” I tell myself. Crank it up to 7 MPH, and start to run. FOR PETE’S SAKE!!! How after having zero breakfast and only one cup of coffee do I have all this urine? I would be a good dog. I could pee on everything all walk long! Change the pants again, and it’s not even 10 AM.

This isn’t the first time I’ve had to deal with this issue. It’s been getting worse ever since seven year old Cooper joined the Tippett crew. It became glaringly evident when I signed up to coach Campbell’s soccer team when she was 4 years old. Let’s clear something up first: I am sporty, but not “soccer sporty”. I don’t like the game. I don’t know the game. It bores me to watch it. I don’t get it. There is way too much running. But when the league called looking for coaches (because no one had volunteered), I said yes. Only because I didn’t want some jackass coaching my baby girl in her first soccer team. I quickly learned that no soccer knowledge or skill was necessary, although it would have been nice. I simply had to supervise a handful 4 and 5 year olds. They rarely did what we practiced anyway. Two of them would run around the field with the neck of their t shirts at the top of their heads, looking like “Cornholio” from Beavis and Butt-head. It was like wrangling rabid squirrels. ANYWAY, back to the matter at hand. This had been the first time I noticed a bit of leakage as I ran with the children around the field. I consulted with my doctor and was referred to a specialist. The specialist said I didn’t particularly need surgery to fix the issue, I could be fixed with what I’m going to call an “O-ring” that I insert into my lady parts, so it won’t leak anymore – kind of like a self-inflicted kink in a hose. HOORAY! I’m so excited to use this newfangled thing and run about the soccer field, coaching and cheering unabashedly. Fast forward to soccer practice, I’m in the middle of the field, surrounded by children. Their proud parents look on from the sidelines. I’m feeling confident, yet awkward, having placed the O-ring (my secret little helper) before leaving for practice. Jogging around the field, it comes time to yell directions, telling the kids where the ball is and which way to run. Oh GEEZ, NONONONONONONO. Something is slipping and moving as I clench my body to yell. The O-ring is trying to escape! There is no bathroom to escape to. My only way out is to limit movement, finish practice (perhaps a few minutes early) and escape to my car to retreat home and set the newfangled O-ring on a shelf in my medicine cabinet where it will forever stay. I can only hope the onlooking parents think I pulled a hamstring, because the truth is way too embarrassing.

Given my current predicament, maybe I should give the O-ring another shot for parenting during the pandemic?!