Today Was Rough

And I can’t sleep.

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.

Check out the bottom left – Cooper created player #18, Cooper Tippett

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.

Play Hard, Play Fair, Give Back

On the heels of MPS Awareness Day I am overwhelmed by the outpouring of support for Cooper, his situation and our journey. MPS Awareness day always sends me reeling. Usually I have a “wear purple!!” campaign and everyone posts photos of themselves wearing purple and wishing Cooper well. Instead of a purple campaign this year I was busy trying to generate interest in the MPS Society virtual gala and bidding on the auction items I had procured. Alas, the Gala and auction were a success and we toasted in celebration with a tiny group of vaxxed friends and family. But the excitement of the gala and MPS Awareness day is just one part of the past week.

This past Monday, the MPS Society organized virtual Hill visits to advocate on behalf of our MPS and ML affected individuals and families. We asked that our representatives and senators support newborn screening legislation and the STAT Act. We also asked our Senators to create a resolution to make May 15 National MPS Awareness Day. Senator Bennet’s office agreed to do the resolution!!! From what I understand, it’ll be presented to the Senate and a press release will be coming this week. HUGE WIN! So excited for a Colorado Senator to step up for us!

My mom, myself, Jamie, Jack and Mary (from Senator Bennet’s office) for the MPS Society Advocacy Day

Last weekend we were blessed to become a part of the Dawg Nation family. We all had the most wonderful night, being OUT, watching hockey, talking hockey, making new friends and finding old friends. We were surrounded by people lifting us up, celebrating and supporting Cooper. I felt like I was in a dream! We are excited to be involved and pay it forward with Dawg Nation.

Cooper with fellow Dawgs and Colorado Avalanche greats, Jan Hejda and Milan Hejduk

Of course these wonderful things happen and all the while sweet Velocity is by Cooper’s side. Everyday since February 14, 2020 she’s here. This expertly trained ball of white floof is part of our family, free of charge, as Cooper’s Service dog. Every week at infusion, she’s there. Every doctor appointment. Everyday I am reminded of the generosity and compassion of the staff, donors and volunteers behind Canine Companions.

Cooper and Velocity waiting to check in at the hospital for infusion.

I’ve mentioned it before, but I need to mention it again. The hospital staff is our adopted family. They see to it that Cooper has a great day, every infusion day. They’re his hockey team, his biggest supporters, and Velocity’s biggest fans. They are there with an ear to listen and empathic smile as I share our ups and downs. They’re along for this journey with us and they take care of the Tippetts. We leave every week after infusion and although we are relieved to go home after the long day, we look forward to being back with friends again next week. We are forever grateful for the compassionate care and buddies we have at Children’s Hospital Colorado.

School (noun): an institution for educating children. I am overjoyed that school for my kids means so much more. A safe place to be heard and seen. A place with friends, staff and curriculum they enjoy. An extension of home where the adults there are looking out for their wellbeing just as much as we do. Campbell is thriving at her “hockey school”. She’s made great friends, developed leaps and bounds as a hockey player, and is challenged academically. Of course the engineer in me is proud that math is her favorite subject! Cooper’s school continues to lift him up every day. His team is the best. I can’t put it any other way. Modify the bathroom for him? OK. Lower a swing? done. Need a HC accessible switch on the door? done. iPad robot in the classroom so that Cooper can attend school virtually while at infusion and recovering from surgery? sure! (We knew all about online school before COVID.) Special seating for each classroom/lunch situation? done. Speakers in the classroom or a speaker for the teacher so he can hear better? check. Customize the special class outings so he feels a part of the fun? yep. And then we’ll touch base and they’ll suggest ways it needs to be changed so it can better. Of course the IEP and Special Ed department are to thank, but this group goes above and beyond to make sure school is everything it can be for Cooper. I’m constantly full of joy and appreciation for Cooper’s experience as an elementary school kid.

Campbell and her classmates celebrating after her goal

So what am I getting at? My heart is so full. Our bucket is so full. We are living life to the fullest, and we need to give back. I know I do things to give back. But I feel I need to do more. Visit my new page, Extraordinary Organizations. Donate your time, talent or cold hard cash to these organizations that have lifted us up, and do so for countless other families as well. Share their missions. In the meantime, I’m going to carve more time out of my day to be of help where I can.

Thank you for lifting us up. For reading my rants. For sharing our story. My new mission is Dawg Nation’s motto – Play Hard, Play Fair, Give Back.

Reflecting on our journey

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.

Amen

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.

T minus 3 days

I find myself not wanting to go to bed. I’m so tired my head hurts and my body is dragging, but I don’t want to give in. Going to sleep means I wake up the next day and we are one day closer to Cooper’s surgeries. I see Cooper pulling the same trick. He even verbalized it last night “I don’t want to go to bed, then I’m only three days away from surgery” – that’s when I realized I was doing the same thing.

Now I need to get him, and myself, on the next page. We need to get to surgery and beyond. After surgery is cast day #1, which brings us closer to cast day #48, when we get the cast off.

We’re taking one step at a time. And right now, we are enjoying the time Cooper is still literally taking steps.

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?! 

This was supposed to be our Christmas Letter

Blank space.  Lots of blank space. An empty glass of egg nog (the good kind) and an empty Word document…Where to start…..  It’s time to write this year’s Christmas letter.  It’s one of my favorite parts of the season! But I’m not feeling it yet.

I start by reviewing last year’s Christmas letter.  I feel like this year didn’t happen.  We are right back where we were last year – preparing for a major surgery for Cooper.  Is this it the rest of our lives? Will we be continually preparing for the next big surgery?  (Catch up on how this is Groundhog Day on Cooper’s Caring Bridge site, look for June 3rd’s post titled Curveball. But the Cliff’s Notes version is this – Cooper was supposed to have hips, legs and ankles surgeries last summer.  We got to the hospital and found he had the beginning of spinal cord damage, so the surgery plan switched to spinal decompression surgery.  Now this summer is approaching and we’re “back to the future” preparing for the surgery we were supposed to have last year.)

I tell ya what, I’m ready for it.  Well, I don’t think I’ll ever be READY for it, but I know it needs to happen. 

Cooper and Campbell are taking ice skating lessons.  If you hear Cooper talk about it, he calls it “training”.  Ya know, because this kid has NHL (National Hockey League) written in his heart.  Lessons are 30 minutes, once a week.  Campbell is doing really well, loving it and ready for more advanced lessons, hockey pads and a stick.  Sweet Cooper is having trouble.  His knock-kneed stance, incomplete hip structure, misshapen spine and large chest cavity prove to be hard to accommodate on ice skates.  Getting up from the ice by himself is near impossible.  He can do the move on the living room rug, but can’t get it to work on the ice.  Tonight was the first night he repeatedly fell to the ice on purpose, just to rest his legs. The instructors offered to help him up, but he chose to sit there for a long while.  My heart broke.  He’s been able to overcome, or we’ve been able to accommodate, everything so far, but not here.  Not yet. 

So my heart knows this next surgery, to correct Cooper’s hip shelves and align his knees and ankles, is a necessity to give him the mobility this active kid desires. 

I have so much anxiety about the whole damn thing.  And again, it’s right where I was last year.  At least I have one out of state surgery under my belt from our adventure this summer.  I know the hospital and when the cafeteria closes.  I know where to order the good Italian food from.  I know a Wilmington Blue Rocks baseball game will cheer us all up.  I know to keep track of the pain meds as close or closer than the nurses do, because they are very busy and Coop isn’t necessarily their number one priority.  I know not to buy plane tickets for the trip home until we know when we’ll be able and comfortable to fly.  I wish I could say I knew where to stay.  The condo we called home last year has had management changes and is no longer doing short term leases.  So I’m on the hunt for a new place to stay near the hospital.  Must have full kitchen and ample space to accommodate the family, two of us who will bring work along.  Must have exercise facilities.  Must be wheelchair accessible.  That doesn’t seem too overwhelming.  Why can’t I get over it?

I think the unknown part of recovery still has me on edge.  True, we’ve done recovery with a neck brace, but Cooper was playing mini golf eight days after surgery!  Time to do recovery in a body cast this time.  The travel will be challenging.  Cooper’s seven weeks in a body cast will be the most challenging.  But we have such great support, family and friends who would stand on their heads to entertain Cooper if I asked them. 

I’m coming to the realization that I need to hand this preparation anxiety over to God and let my heart rest. That’s hard for me to do.  I have too many spreadsheets and checklists and where does God fit in?  I can pick up planning again in February and do the leg work, but I need the rest.  I need the happy elf-like Chris full of Christmas spirit and optimism to show up and write my Christmas letter.  She’s around here somewhere…..

Thankfully my friend Amber’s elf provided inspiration for our elf’s toilet paper snowflakes tomfoolery tonight.

Am I making this sucky?

I just realized today that things aren’t going to get better. Nowhere have I ever read, “Well, the first 7 years were tough, then we really cruised through this rare disease thing”.

It hit me when I pointed out a herd of elk across the street from the cabin we were staying at this weekend. Campbell had spotted them, and I pointed them out to Cooper. He couldn’t see them. They were these large, brown creatures, meandering about 200 feet away from us, and he couldn’t see them. I felt sick to my stomach. It’s starting to click. Yep, he fails the vision screening at school every year. Yes, he glasses for an astigmatism. When he wears said glasses, he says everything is blurry, so the glasses sit in a case in his bedroom. He has recently been diagnosed with the beginning of corneal clouding. This doesn’t usually happen to kids, so no one at Children’s Hospital can help us. We’ve got an appointment at University Hospital in November. I feel like we are opening a new can of worms on this one, and I’m scared.

But we aren’t all done with the last can of worms, now are we? Cooper’s (surprise) spinal decompression surgery was June 4. At that point we were told he’d be in a neck brace for 2-3 months. Let’s do the math…. carry the one…. yep, we hoped we’d be hearing we could be rid of that thing by now, four months later. Yet, the latest note from the doctor is something along the lines of “Things look good. Continue to wear the brace for car rides and high-risk activities, do more X-rays in FOUR MONTHS and we’ll review again”. I nearly puked reading that one. Cooper is an active 7 year old boy. I think most of his life is “high-risk”. Riding his bike, playing hockey, football, baseball and soccer in the backyard. Playing sports at recess. Swimming and wanting to ice skate. Participating in PE. Occasional scuffles with his sister. Maybe the doctor didn’t expect Cooper to be such an active kid and that “high-risk” activities weren’t on the agenda. I should feel blessed that he’s an active kid. I should feel blessed he isn’t really bothered by the neck brace. He remembers to put it on, he can do it by himself, and he knows when he needs it. (We’ve been living by the “high-risk activities” rule for a month now already.) At the beginning of the school year, I told Cooper he could take the neck brace off for his school photos. He forgot to, and didn’t care that he had it on. I’m not going to have him retake the picture without the brace. This is real life, and where he is right now. And he’s happy. Apparently Brian and I are the ones who so desperately want the neck brace gone.

All of this swirling though my head as we now have new dates for this summer’s surgeries for Cooper’s hips, knees and ankles. This part sounds like a broken record, I’m sure. This is the exact same place we were last year, preparing for this surgery before we found the severe cervical stenosis that forced the spinal decompression surgery instead of the hips, knees and ankles last summer.

It’s a lot to process. But at the same time, I find myself needing to adjust my filter. When Cooper gets mad at Campbell for something that seems ridiculous, I ask him, “Are you making this sucky?” I try to point out that he can be angry at things, and it can suck, or he can let it go and it won’t be sucky. So at this point I ask myself, “Am I making this sucky?” Yes, it may be less than ideal, but I need to adjust my filter, because it’s not going to get easier.

Today’s Battle – the Typical Sibling’s filter … and ensuing tailspin for mom

Even when there are days that the whole world seems to be on your side, when people come out of the woodwork to help – there are still devastating battles.

Today’s battle, fueled by lack of sleep and structure after the most wonderful family vacation comes in the form of the typical child. This typical sibling, who observes first hand the precautions and special treatment of the rare disease sibling, feels unimportant and forgotten. Unimportant and forgotten although two separate teachers have gone out of their way to pluck typical child from her environment, spend time with her and make her feel special. Unimportant and forgotten and in physical pain because she had two teeth extracted yesterday, and (according to her) no one threw her a party or had “get well soon” cards for her. (Although she did get a card and gift.) Unimportant and forgotten and now jealous, because rare disease sibling just got hearing aids – that are Bluetooth enabled, and can listen to music and You Tube without headphones. Jealous because we had a meeting with rare disease sibling’s new teachers, occupational therapist and physical therapist, to inform them of the rare disease and it’s implications that so often define his life. The meeting this morning warmed my heart and reminded me that we are so very blessed to have such incredible support from the school. We figured out all sorts of accommodations for rare disease sibling, shared resources and ideas and are off to a great start for the new school year. But, this afternoon the typical sibling cried with body shaking sobs in my lap because she was not the recipient of all the attention this morning.

My heart breaks to see either of my kids suffer – mentally and physically. And apparently I had no idea how much this journey would affect our typical child. I have so much trouble wrapping my head around it. I flat out told her, “rare disease brother gets all the attention for these particular instances because he’s got a condition where if we do the wrong thing, he could die.” Maybe I’ve used that line too much, because it didn’t seem to change her mind. She’s still upset he gets so much attention and gifts.

So I rant. And I write. Because I’m at my wits end and I feel pulled in so many different directions. For example – typical sibling’s teeth extraction. It was an urgent, last minute appointment. But the only time the doctor had available was when I was scheduled to meet with my House Representative’s office about legislation affecting us – the rare disease community. So I asked understanding and flexible husband to take typical sibling to the appointment, and I’d do my meeting and we’d all be happy and accomplished and reunite later in the afternoon. But as I parked my car in the business park’s parking lot, I had a bad feeling I had made the wrong choice. What if something went wrong with the anesthesia and I wasn’t there? Here I am again, barking about rare disease and not attending to typical sibling’s needs. And of course, it all come with a tinge of guilt that I’m not sitting at my desk midday Tuesday, attending to work emails and customer’s questions.

This is going to sound crazy, but the only place I feel confident and at ease is while I am working. My work is black and white, it’s a challenge, and I work with nice people. They don’t provide me with any more drama, and I appreciate that. Some of my coworkers know my story as a rare disease mom. Some don’t. The customers I work with certainly don’t know about our rare disease journey. I love slipping into that world. I like to stay there and feel appreciated and know the answers – very different from life outside my home office.

Another pull on my time and heartstrings is my volunteer work. It’s always sitting in the back of my mind; I need to finish the meeting minutes, I need to reach out to x, y and z, I need to schedule the next committee call. The work is very important to me, but it doesn’t scream as loud as the paid (work) emails and the children, so it sits for a bit longer, and I rarely feel adequate with my time spent there.

Let’s not talk about the list of doctor appointments and follow ups I need to schedule for rare disease management. I’m just going to put it on my to-do list, and the ones that get done first are the ones that concern me the most – I’m looking at YOU eye doctor! I’ll listen to your fine hold music tomorrow.

I certainly suffer from decision fatigue. “Can I watch YouTube?” “Will you play with me?” “My teeth hurt.” “My legs hurt.” “He was mean to me.” “She stuck her tongue out at me.” “I’m hungry.” “Text message from the hospital: press 1 to confirm your appointment” I feel like I can’t think a single thought or accomplish a single task without interruption.

Although the last statements aren’t questions, there are things I need to do about them. “Enough screen time.” “Do you need medicine?” “Time to rest.” “Leave your brother alone.” “Ignore her when she does that.” “Would you like an apple? A banana? Carrots?” “1 – Yes, we’ll be there, like every other week!”

All this leads to me saying things like “If you ask me about screen time one more time, I’m going to run the phone over with the car. Then I’m going to back up and run it over again. Hear me!!?!” And that’s irrational crazy mom talking, and I don’t want to be her.

So I need a breath. Some space. Some quiet. Some rest. That usually comes late at night, when everyone is asleep. I rob myself of some shut-eye and let my thoughts ramble and my mind decompress.

I obviously need to cater more toward typical sibling. This will materialize in a mommy/daughter time once a week, where we concentrate on what she wants to do. Go to a park? Play cards? Read? Sweetheart, I promise to help you feel included and special, because you are – even though you don’t see it through your filter right now.

p.s. – I don’t want anyone to think typical sibling is a jerk because she’s not doting on rare disease sibling. She’s a kid, with feelings, and I’m so very happy and proud she can express those feelings to me. She’s her brother’s biggest fan, protector and a wonderful playmate.

And as for me, I know I’m not the first to feel this way – to be ready for the kids to GO BACK TO SCHOOL ALREADY. I know moms can go through this heartbreak and frustration whether you have a rare disease kid or not. I’m just putting it out there with my spin on it, because keeping it inside takes up too much space.

Finding Gratitude at the end of the Dirt Road

Today I took a walk by myself. No friends. No dog. No music or podcast in my ears.

I recently read several articles about “mindfulness” and decided I needed to give it a try. I listened to my feet on the dirt road, and how I inadvertently kicked small pebbles as they interfered with my gait. My steps sounded crunchy, but softer and quieter on the wet parts of the dirt road. I listened to the wind through the aspen leaves and the humming birds buzzing around out of sight. As I tried to identify a bird in the middle of the road, I realized my vision was blurry. I had been overcome with emotion and was crying. Sobbing.

I continued on my path, trying to figure out *which* emotions took over. To my left was a driveway to a home. Two dogs flanked either side of the driveway, 20 feet from the road. They were barking – on full alert of my possible intrusion on their territory. As I walked by they mirrored my movement along the road, not approaching me, just guarding their space, as if guarding a line in the sand. Without music or friends to distract me, I quickly identified with the dogs. Where is my line in the sand? What do I guard? The outside world can do as it pleases, but when it comes to my kids, that’s my line. That’s when I start barking. I bark a lot on Cooper’s behalf: legislative advocacy, special accommodations at school, scheduling and attending what seems like a million doctors appointments, raising awareness about MPS. I feel like most people know me as “Cooper’s Mom”. Which is good, and I’ve worked for that and I own it. But what about my sweet firstborn? Campbell recently started on a new soccer team, and Cooper and I have hung out during a few practices. There I am “Campbell’s Mom”. And no one knows all the “Cooper stuff”. They only see Cooper’s neck brace, and don’t ask many questions. I feel like I’m living a second life there on the sidelines, as a “normal mom”. Are my emotions overwhelming guilt that I don’t give the same amount of effort to Campbell’s life?

I saw a glint of blue flash by in the sky, and found the bird I had noticed before. Sitting in the dirt road – although blurry – the bird was grey. But in flight, the feathers were the most spectacular blue! It perched in the shade on an Aspen branch and it’s dull grey color almost made me loose sight of it. But when it took off into the air I saw the brilliant blue again and was amazed at the juxtaposition of the two appearances of the bird. My mind wandered and this time identified with the bird. Driving in my car, going to the grocery store, and standing in line at the post office are where I wear my grey feathers. Advocating for Cooper seems to be where my blue feathers flash.

Next the dirt road started up the hill and turned the corner. I felt my heart rate quicken and sweat dripping down my face. As I wiped my face with my t-shirt, I realized how grateful I am for this exercise, my legs that work, my feet that can take me to this beautiful place. I rapidly started zooming out, feeling the big picture. I am grateful for this trip to the mountains – something that we didn’t think we could do this summer, since Cooper was supposed to be in a full body cast. I am grateful for Brian (my husband), and the team we are when it comes to family decisions. I am grateful for Campbell, her fast legs, her big heart and even bigger hugs. I am grateful for our support system of friends and family. I am beyond words grateful for their generosity. I am grateful for the generosity of strangers, who reach out to help my little boy and our family.

So those emotions that came out when everything else was quiet? Gratitude.

This evening, the visiting priest at mass talked about how you can make the world a better place by having gratitude. As I see it, there are no coincidences. It was time for me to acknowledge all the love that’s been showered on us since my last blog post about Cooper’s surgeries, and how it was Our Turn to ask for help.

If you follow Cooper’s Caring Bridge site, you already know that Cooper’s hips, knees and ankles are free to do as they please this summer. Cooper’s pre-surgery MRI showed that his spinal cord was being compressed at the base of his neck, so instead of surgeries on his hips, knees and ankles, Cooper had spinal decompression surgery and is in a neck brace for three months. (Oh, don’t worry! We’ll go back for the hips, knees and ankles next summer instead.) Brian and I handled the surgery change with calm confidence. We are thankful for our MPS family and the medical knowledge we’ve gained during the five years of our involvement with the MPS Society. We are thankful Coop and I got there in time for the MRI after cancelled flights, bad weather and NEW last minute tickets on a different airline. We are thankful the MRI showed the cord compression and Dr. Mackenzie and Dr. Campbell could operate ASAP. We are grateful that we have the opportunity for the best care for Cooper. We are grateful to have this summer with family fun time that doesn’t include a full body cast and only wheelchair accessible areas.

So walking up the dirt road to our driveway today, I know my emotions were those of gratitude – for the things I’ve stated, and for more that I haven’t stated. I pray that I’ll always feel AND express my gratitude as our journey continues.