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!

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?!