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.

Our Turn

It’s taken me a while to wrap my head around this, so let’s start at the beginning:

Our 6 year old son Cooper has a rare, progressive disease called MPS IVA. It affects every organ of his body (except his brain), and has SEVERE skeletal implications. We are blessed to have a weekly infusion to slow/stop the progression of the damage to his organs, but the only way to address the skeletal issues is with surgery. It’s time for the first Orthopedic intervention.

Cooper will have surgeries on both hips, knees and ankles in June. This will relieve the constant pain in my first grader’s hips and knees and keep him mobile for a while longer. The surgeries will be done by Dr. Mackenzie in Wilmington, Delaware. He’s the orthopedic expert on Cooper’s condition, so that’s where we’re going.

The surgeries will be one week apart. The right hip, knee and ankle first, followed by the left hip, knee and ankle seven days later. This procedure will leave Cooper in a spica cast, from his chest to his ankles, for seven (what I imagine will be grueling) weeks. We will fly home after the second surgery. Cooper and I are booked first class on United on the way home, so that he has room for his new “width” with the spica cast. The rest of the family gets to fly coach, or swap me seats when I need a break. After seven weeks, we fly back to Wilmington to remove the cast, a check-up, and five days of intense Physical Therapy. Then we fly home again, ready to strengthen and use those new legs, just in time to go back to school.

This surgery will be FREE! HA! Only because we meet our out of pocket max for Cooper in the first week of the year, due to Cooper’s weekly infusion cost.

Getting to the surgery will not be free. We’ll fly the whole family out there, and we’ll stay for 2 weeks. We could have stayed at the Ronald Macdonald House for free, and we chose not to. I am either going to be at the hospital with Cooper, or hiding in a 2 bedroom apartment we’ve rented. I’ll pretend to be a normal mom hanging out in Delaware for a couple weeks. I plan to work for a couple hours a day while we’re there – mainly for a sense of normalcy, and to keep my mind (and inbox!) from imploding. Brian will work too. Campbell is too much of a support to Cooper to leave her home. We’re bringing my mom. Her help with Campbell, Cooper and keeping us moving will be invaluable during this time. These are the choices we’ve made, and they’re costly. We are ready to sacrifice to afford this journey.

Friends and family ask, “How can I help during this time?”

  • Pray for us. Pray for healing, strength, grace, patience and creativity in entertaining Cooper. I am partially terrified of Cooper’s reaction to being immobile for seven weeks. He is such an active kid. He LOVES sports – hockey, soccer, basketball, baseball, riding his bike. My worst fear is that he falls into some sort of depression because he can’t do the things he loves. But at the same time I have faith that Cooper will show US the way. I think he’ll show us what he can and can’t do, and we’ll learn together what fun he CAN and WILL have this summer. I’m willing to load him up and take him and his reclining wheelchair to all sorts of sporting events, museums and the zoo.
  • I hope visits from friends can entertain him and cheer him up. But, I am nervous that Cooper’s new condition will make him embarrassed and not want visitors.
  • I’m sure we’ll have a sign up to bring meals for our family when we return home, and I’ll share that when it happens.
  • Check out our registry. If that’s how you’d like to help, we thank you from the bottom of our hearts. Feel free to share it with your friends/family/social media. I swallowed a ton of pride to put it together and share it. Today we were denied by an organization that “provides children and their families free flights to distant, specialized care and valuable second opinions” because we make too much money. It felt like a slap in the face. We work our asses off to provide for our family. I work my ass off in advocacy, fundraising and volunteering for organizations that can make a difference in the lives of families like ours. At the same time, I understand need based awards. Why am I so mad/sad/insulted? Maybe I should put my therapist bills as an item on the registry too!? (In retrospect, I’ve determined I’m so upset because of all the time I spent on the application.) In other news, we applied for medical travel assistance from the MPS Society, and their award is not contingent on income. We are very appreciative of the Society’s support financially (if it get’s approved), the valuable medical information we’ve learned over our years as members, as well as the connections we’ve made who are helping us hold it together and make decisions during this time.

Bringing it back to now – Cooper knows he’ll be in a wheelchair for a majority of this summer, but he doesn’t know the extent of the cast and his immobility. We’ll share the details with him closer to surgery time. No reason for him to get all worked up about it – like me.

Anyway – I’ve shared all this because if I’m asking for money, I want to be transparent. This is where we are. We’re ready to foot the bill because of the choices we’ve made. But if you want to help financially, I am humbled and we are very appreciative.

I’ve been fundraising for different things for the past 10 years, when is it OUR turn? Today.

Blogging from the Beach

This is what the last 45 minutes of vacation looks like. I’ve already cried twice this morning, thinking about what we came here to forget.

I turned on Roaming on my phone so that I could be in touch with the kids and home if needed. And of course life popped up. I got a reminder of Cooper’s eye appointment on Friday. I received the schedule of Coopers pre-surgery appointments. I got a reminder of Cooper’s infusion, asking me to confirm. I kept an eye on my work email. After being completely hands-off while away on Cooper’s wish trip a few weeks ago, I don’t need a repeat of that week of work catch-up.

But we also got to FaceTime the kids and watch them ride bikes and give them good night kisses, making our time away a bit easier on them (and me?).

I am grateful for time away, doing NOTHING. When a resort employee approaches, asking if he can arrange an outing, I point to my beach chair and tell him I’m not leaving this spot, “gracias”.

So yet again we prepare for re-entry. Re-entry is tough, knowing the summer we have coming up – Cooper recovering from surgery, immobile from his chest down. Thinking about it causes me anxiety. Constant back and forth with the medical team, figuring out how to get him home in the cast and back again – MUCHO anxiety. (See?! I’m practicing the Spanish I’ve picked up.)

So I don’t know if I need to “buck up”, “get a grip”, or “let go and let God” but I’ll be working on that now that the vacations are over and there is nothing between me and Cooper’s surgeries but 50 days and a ton of coordination and planning.

What’s next?

There needs to be a 12 step program for moms who have recently completed their child’s wish trip. Yep, I cried when we checked out of Give Kids the World Village. The elderly gentleman handing me my packet of souvenirs and “see ya later” letter told me they were happy tears. He was so sweet. But in my head, I was grieving. We will never have that kind of carefree, joy and surprise filled trip again. Now we go back to weekly infusions, lots of doctor appointments and an uncertain future. We go back to explaining to everyone that Cooper has a rare, terminal illness. We had such a sense of belonging in the Village. The families didn’t talk medical details. We spoke of joy found each day – whether it was at a theme park or in the details of life at the Village. It was magical and special and uplifting and carefree, and we will forever be grateful to Frank at Baking Memories 4 Kids for our trip, as well as Whitney at Children’s Hospital Colorado for nominating us for the trip. I would have never nominated Cooper for the trip. I was too caught up pretending to be a “normal” family.

I unplugged for the trip. I only posted pictures and wrote about what we did each day. No emails. No meetings. No phone calls. It was freeing and I appreciate the time to live fully with my family.

So now I catch up on emails. Catch up on work. Catch up on paying bills. Now I’m processing what just happened, and how I get from here to what’s next.

What’s next? Hammering out details and travel plans for Cooper’s surgeries in June, diving in to what I can for the MPS Society, and organizing our fundraiser. Spring soccer and baseball are starting as well, so we’ll be taking the kids opposite ways two days a week for the next two months. So in that weird way, I’m comforted we are back to “normal”. But I can’t guarantee I’ll be able to hold back the tears Wednesday when Cooper screams in agony as we access his port for infusion. It’ll be a reminder that we aren’t normal, that we deserved the trip, and that we need to plan more time to be carefree and live in the now.

But as Cooper requested, just one more arcade game before we go:

“That Was the Best Day Ever”

I can’t help but think we’re approaching the top of a roller coaster ride right now. Things are really, really good. (Yep, I actually knocked on wood as I typed that.)

We’ve got Cooper’s wish trip coming up. Only a few days until we leave for Walt Disney World! Cooper has been marking days off the Calendar since January 1st.

To say we are thrilled is an understatement.

But that’s not the only thing going on this week – yesterday at the hospital we celebrated Cooper’s 5 year anniversary of being on VIMIZIM, his weekly infusion. And ya know what he got to do? Ring the Warrior Bell. Yes! That Warrior Bell that was only for the kids done with their chemotherapy. The celebration was the brain child of our FABULOUS nurses and child life staff at the hospital. I’m afraid my words and pictures won’t do it justice, but I have to share how loved and special Cooper (and the whole family) felt today. It’s just too good not to share.

If you’ve seen pictures of us at the hospital, there’s a good possibility you’ve seen Cooper playing hockey in the hallway – while hooked up to his infusion and my dad nimbly following Cooper and maneuvering his IV pole through a hockey game. This is Cooper’s favorite activity right now – whether it’s at the hospital, in our basement, in our backyard, in Grandma’s kitchen or Great-grandma’s back porch. HOCKEY ALL THE TIME! So of course our Children’s Hospital friends not only named the infusion center “Cooper Stadium” today, but there were goal creases, two blue lines and a center red line in our hallway today. It worked perfectly, because we brought 2 goals, 8 hockey sticks, Cooper’s set of goalie pads and 20 friends. GAME ON.

Check out the epic Hockey game here

We paused the hockey game for a bit so that our hospital friends could surprise Cooper with the ceremonial silly string, a gift, cake, and even a “Zamboni”!!! Or close enough to a Zamboni – the machine they use to clean the floors. Cooper loved his ride on the Zamboni around the infusion center! (If you look closely, you can see Cooper’s room in the background, with a sign that says “Cooper’s Penalty Box”)

Then it was time to do what has always alluded us – it was time to ring the Warrior Bell. The inscription on it had been personalized for us today. The words were PERFECT.

I’ll spare you the video of me trying to read this out loud, but I’ll promise you it wasn’t easy and the next time, I’m going to go to the bathroom and practice it a minimum of 10 times before it’s time to do it in front of everybody. Then maybe Cooper won’t get embarrassed that mommy is all choked up, and he’ll want to proudly ring the bell instead of bury his head in my arms. But I’m OK with that. It’s who we are and where we are in our journey – still clinging to each other when we are scared.

So we moved on to the cookies mom made and the cake. We laughed and the kids played more hockey and we finally left. As we got into the car Cooper proclaimed, “That was the best day ever!”

But of course we didn’t go home, although I was emotionally spent and just wanted to hide under the couch. We went to Chic-Fil-A because Cooper LOVES it and it just so happens that it was our elementary school’s night there for a fundraiser. So we went and ate delicious chicken, visited with friends, played in the playroom and was immersed in our community.

Even this morning, Cooper came running out of his bedroom, carrying the balloons that were on the Zamboni, singing “I’m so happy! I’m so happy!”. My jaw is sore from tensely clenching at night, worried and anxious for Cooper’s upcoming surgeries this summer. But for now I’m going to be mindful of where we are at NOW and soak in the happiness.