The Gifts of Cyrus Brown

Cyrus Lee Brown ~~~ February 15, 2015 - June 30, 2023

 
Cyrus Lee Brown arrived on February 15th, 2015. I know that not all mothers experience that instant connection with their newborn child, but I did. The second Cyrus uttered his first cries, my heart was his. I had never been so excited or grateful to meet anyone in my life! We chose the name Cyrus because it means Sun, as in Sunlight. We knew Cyrus would be a source of light in our lives, and while everything else about Cyrus was completely different than we expected or anticipated, that always remained true.

Cyrus loved big inputs: being thrown up in the air, spinning in circles, swinging as high as possible in tire and blanket swings, someone drumming on his chest. These actions would earn the biggest smiles. He loved circle time, particularly groups of children singing simple songs in chorus. His favorite song was “Mr. Sun,” which always felt perfect to me. He responded best to the color yellow, and all the big mack buttons in his pre-preschool changed to that color to accommodate him. He positively hated his wheelchair most of the time and preferred to be on the floor where he could roll around to go where he wanted. The stander was better than the wheelchair as long as he wasn’t there too long. 

Some of his best, most joyful times were right after he had been horribly sick. He would grin and laugh all day long for no discernible reason at all, like he had found the joy in just feeling okay again. That was sometimes all it took. 

 
All of that feels like precious little to write about the son I’ve raised and loved for more than eight years. But I’m truly not confident I remotely understand what Cyrus’s day to day life felt like to him. It was hard to know what he was thinking or feeling. Even his facial expressions were often subtle and would disappear in a flash. On really good days, he never stopped vocalizing and smiling. Sometimes, he would laugh out of nowhere, but if we tried to join in on the fun, his joy would often vanish. On really bad days, he would cry or scream inconsolably, and I couldn’t always figure out why. All I could do was hold him.

But while I may not know what life was like for him, I do know how he impacted me.

Cyrus was a rainbow baby after three miscarriages. He gave me hope again.

He made me realize all the abilities that I took for granted. That our focus should always be on what we can do, rather than on all the things that were wrong or outside of our control.

He made me see the miracles in small things - like being able to roll over or laugh. He made me pay attention to the smallest of details, lest I miss a fleeting expression on his face. His reactions and responses were often incredibly subtle, but I learned to recognize the face he made when he wanted a pacifier, and the sound he made when he wanted out of his chair. I learned to tell the difference between the grimace his therapists often mistook for a smile and an actual smile. I learned to connect with him as another human being without the words I almost always rely on.

Cyrus modeled resilience. He put up with a lot - from seizures, to taking meds, to breathing treatments, and wearing bipap 22 hours a day. He usually didn’t have a choice. I remember one afternoon, a seven-month-old Griffin came crawling up to an almost two-year-old Cyrus, who was sprawled out on the floor. Griffin was soon climbing all over Cyrus, grabbing his hands and face. Cyrus rolled over and looked right at Griffin and let out the biggest resigned sigh. In that moment, he seemed like the older child of the two of them, not just in chronological time, but in his understanding of the world around him. Cyrus was so completely over it, but somehow understood that Griffin didn’t understand, and he just knew he’d get through it. (He didn’t have to for long. Mom came to his rescue). 

Cyrus taught me, a girl who was raised to believe she always had to be completely self-sufficient and independent, how to ask for help, and maybe more importantly, how to accept that help with grace and gratitude instead of shame.

In caring for Cyrus, I’ve learned more about seizures and epilepsy than I ever knew there was to know, picked up random nursing skills that I have no idea if I will ever use again, and have become pretty adept at navigating the travesty that is our medical system.

In watching Cyrus with his peers in class, I learned that everyone has the capacity for friendship and love. One of my clearest memories is of Hannah and Cyrus in pre-preschool together with Nicole as their teacher. Hannah had been given a switch that said “Hi Cyrus!” and Cyrus had been given one that said “Hi Hannah!” Then these two went wild slamming that button back and forth, laughing and smiling the whole time. 

 
Cyrus has had a profound impact on Eliana, whom we always referred to as Cyrus’s “big” little sister. When she first came home from the hospital, she was his favorite person. He would always roll towards her and try to touch her. We were very worried about having to protect her from his very wobbly head. By four months of age, we realized we had it backwards. We had to protect him from her pulling out his feeding tube or grabbing his face. She spent the first four years of her life very much involved in his care. 

At two years old, Eliana could “hear” seizures just as well as mom and dad. She would come running into the bathroom or the kitchen to tell us. She also learned when he needed suctioning or when his feeding was over. She was so sweet with him - whenever he was sick she would lend him her teddy bear, which was an item she wouldn’t let anyone else touch. If he was sitting in his beanbag chair, she would climb up and perch next to him or beside him and start showing him how to play or draw. And one evening, when I confessed to feeling sad that Cyrus was gone, she told me not to worry - that we would still be able to see Cyrus in our dreams.

 
And though Sorin will not directly remember his brother, Cyrus will have a lasting impact on him as well because when it felt like we were being priced out of the area, Cyrus’s needs made it crucially important to figure out how to stay to keep his amazing medical and educational services. At two years old, Cyrus qualified for in-home support services through California’s IHSS program, which paid Kyle to take care of Cyrus. This program helped us make just enough to make it possible for us to buy a house in the same community where I teach, meaning we are going to continue to stay here. Cyrus essentially gave us a home and a community that Sorin and Eliana will continue to grow up in even now that he is gone.

Again and again, Cyrus brought so many people into our lives and helped us connect with people already in our lives in novel ways. He forced us to build the most solid of support networks all around ourselves that I think will be here for the rest of our lives. 

 

 

Cyrus taught us how fragile life is. And yet, still worth it. Always worth it.

This child has been surrounded by love, constantly grew our own capacity to love others, and brought even more love to us that will stay with us always. To me, that is his legacy. 

The sincerest and humblest of thank you’s:
• To the two women who adopted and babysat me during each of my maternity leaves who have become part of my family.
• To everyone who helped us pay for medical bills and medication when Cyrus was a baby before we got him on Medi-Cal.
• For every gifted blanket, toy, and dinner for I don’t know how many hospitalizations.
• For letting me break down and cry in your office, library, or classroom.
• For inclusive playdates and repeated invitations no matter how many times we flaked.
• For covering my classes on last minute notice.
• To my students and their families who survived my unpredictable, and sometimes extended, absences with patience and understanding.
• For everyone who partook in hours long phone conversations with Kyle and/or myself to keep us sane and connected.
• To all the special needs and ADSL families we’ve never met in person who offered ears, understanding, shared resources and strategies.
• To all the friends (both online and in person) who listened to my stories over and over and never flinched away because what I was sharing was hard.
• To all the friends (both online and in person) who always kept sharing their own lives with us no matter what we personally were struggling with.
• Thank you to every nurse, therapist, social worker, case manager, teacher, aide, doctor, bus driver, pharmacist, spiritual guide, and caregiver that took part in Cyrus’s care and education.
• To everyone who supported us along the way.

Thank you for being a part of Cyrus’s story in ways both big and small. We could not have done it without all of you.

Ways you can continue to support us or honor Cyrus:
• Contribute to Cyrus's GoFundMe to cover end of life costs.
• Donate to ADSL Research or Rare Disease Advocacy/Research
• Remember to say hello to the special needs children and people you encounter in your life. Don’t look away. See them. Talk to them. They are beautiful and precious. And they are people.
• When you see someone you care about in your life struggling, act. When someone’s world has fallen apart they can’t always figure out what they need or where they could use help. Tell them what you can do for them (make/order meals, make shopping trips for them, help around the house, lend an ear or shoulder, babysit children, make phone calls or do research, give/lend money, etc.), then let them decide if that would be helpful to them or not.

 

 

 

First Time Parent Twice

You’re not supposed to compare your children. Or so I’ve been told. But I do. All the time! 

Part of it is that it’s just a completely different experience. Like different enough to not really be able to 

relate the two experiences at all. I honestly feel like I’ve been a first time parent twice. 

From tantrums to nap/bedtimes routines to getting her to eat vegetables to getting her to NOT get into 

every cupboard and drawer, and potty training!

But there are still aspects of our experience with Cyrus that inform our experience with Eliana. 

And in the other direction too! Learning to entertain Cyrus based on what Eliana enjoys. She’s so 

responsive and I’ve learned what works and I find myself using the same techniques with Cyrus, and 

he responds! 

Or she’s a toddler so she just likes repetition. We were watching this alphabet phonics video. Elli 

ALWAYS wants to watch this one video. Not because she likes the video, but because the thumbnail 

has a zebra on it. She always points to it, and says zebra! But it’s the alphabet (apple to zebra), so the 

zebra doesn’t show up for awhile, and she always gets mad around monkey wanting and starts crying 

for zebra! 

So I finally got wise and just started it at w for window! Then we got to the zebra really fast. Only to learn

 that the yellow and the zebra are the ONLY parts of the video she wants to watch. It’s like a 20 second 

segment. So we rewatch that same part over and over and over. And it does not get old. She is giggling 

at the yellow zebra just as much during round seven as during round two. 

But at round seven, Cyrus started laughing, too. And I’m like, huh! 

And it’s just awe. 

 

She held her head up better on the day that she was born than he ever has in his entire life. It felt 

magical. 

Reaching for things, pointing at things, climbing on things, feeding herself, saying actual words, singing  

songs! Telling me about fish in the sky (you know, the long slender silver things with fins on either sides 

and tails traveling through a giant blue expanse?! She’ll tell you it’s a fish!! And who am I to argue?) or 

imitating the sounds of a neighbor’s sheep (it was a bird, but it was definitely making a baa sound. She 

was excited and wanted to go see the sheep!) 

Magical! All of it! And the first time she does anything new I’m crying. Every single time. It doesn’t fade. I

don’t get used to it. Every tiny little thing she learns is awe inspiring. 

Like how does she even do all this?! She has super powers!! Like she’s never seen a fish in real life! 

And she came up with a pretty accurate concept!

I’m telling you, super powers! 

There’s a downside to this. I never want to stop her. 

She’s jumping on the couch? 

She’s jumping! 

And not just jumping. She’s pulling her legs up to her waist at the height of her jump so that she’ll fall 

further and faster. So that she’ll actually bounce! She giggles when she does so. It’s the best sound. 

Why would I interrupt that?! There’s a hardwood floor in front of her or a sharp pointy thing on the 

ground (that she left there). It doesn’t matter. She’s a bonafide wizard doing magic right now!! 

Yeah, yeah, I do want her to stick around long enough to keep being a wizard, to keep blowing my world

 out of orbit. I suppose I will have to teach her that it’s not safe to jump on the couch. 

She calls the long silver things in the sky airplanes now. I’m a bit sad about this. But sometimes when 

she’s with me she’ll call it an airplane first and then excitedly squeal “fish!” And then she’ll watch me. 

And I will laugh, and only then will she follow suit. And it was like she knows it’s not a fish. (Somehow! 

How did she correct her misconception so fast?!) She doesn’t do this with anyone else. It’s like she’s 

saying it only because she knows it will make me laugh. 

And that just makes me want to cry. 

(Forget want! I was crying as I wrote that sentence).

For the best reasons in the world.

I don’t know really what it’s like to experience a child meeting milestones when you don’t have a Cyrus 

informing that experience. These things are amazing in their own right and because I know what it 

means to not be able to do them. 

I know that not every family out there has a Cyrus to teach you that these little things are flat out 

miracles. But I’m telling you, and hoping you will take my word for it - they are.

And we are grateful.

A Year in Review

I realize it’s been awhile since I wrote anything (my last update was literally a year ago). And I appreciate all of you who have reached out to us throughout the year to check that we were okay. We are definitely okay and have a lot to be grateful for. 

I didn’t write during the first half of this year because I just didn’t really have much to say. I was even offered an opportunity to be a guest writer in another special need mom friend's blog, and I couldn't come up with anything to write about. I like each of these posts to have some kind of emotional narrative that captures what it’s like to live this life. For the first six months of the year being isolated and quarantined at home meant we settled into a quiet slow routine. Social distancing protected Cyrus not just from Covid, but from getting sick in general, and he didn’t get sick once in 8 months! It was unusual and amazing for Cyrus, but it was also relatively boring and not fodder for a story. And during the second half of the year, we've just been insanely busy without a moment to spare. But I want to share our experiences this past year with you just the same!

I implemented emergency distance learning last spring semester, and because I was recording my lessons instead of delivering them to five different classes five different times, and because I had been directed to keep the workload light for families that were struggling in a multitude of different ways, it didn’t take as much time to prepare. It was less rewarding for certain (though I had three students that adopted me and made a point of coming to all my live office hour sessions, which made them far less monotonous), but it was also far less emotionally draining. 

And I found myself more present with my own family and that was nice. I ate lunches with my husband, and those lunches were composed of actual cooked meals rather than whatever snacks I had managed squirrel away in my desk drawers that month. I played with my children, pet my cat, went for walks, and just sang and danced a lot with children. 

For Cyrus, well, he didn’t get a whole lot out of emergency distance learning. He only had two half hour live sessions per week, plus virtual therapy sessions. He wasn’t practicing his skills, and he definitely lost some progress, but he definitely recognized his teachers and therapists on screen and enjoyed getting to see them! (Which honestly, is the part I care about more, and why I send him to school!) 

Virtual SDC class!

Graduated Pre-school!

In June, an off hand comment led me to looking up real estate listings. And between a few very very lucky stars lining up (one of which was getting a settlement from my car accident last January. Blessings in disguise!), it felt possible to maybe buy a house. Like maybe. Even during a pandemic, we were on the absolute bottom of this crazy housing market. But the husband and I agreed to try, knowing it could take dozens of offers and months and months of time before anyone might accept a low ball offer from us. 

And in the first list our realtor sent to us, the likelihood of success felt even more stark. In the entire county, there were eight houses in our price range. Eight. Of those eight, only two of them didn’t have a flight of stairs leading to the front door, and were therefore somewhat close to being almost wheelchair accessible. (They each had a step or two in on the way to the front door). 

Of those two, one sold the very next day! 

So in our initial outing, we only got to look at one house. And it was legitimately a really nice house! It had an open living area where the living room, dining room, and kitchen are really all just one large room! Which is fantastic when you have to be moving a wheelchair around from one area to the next. There were three bedrooms! Most of the houses in our range only had two, and this was so nice because it meant Eliana could have her own room without having to share with Cyrus whose breathing machines might keep her up all night. And of the three bedrooms, there was one with an adjoined bathroom that had a full tub without any doors in between the bedroom and the bathroom. That meant we could potentially install a hoist track in the ceiling to go from Cyrus’s bed to the tub. And it had a backyard with this giant beautiful tree! We really liked the house (it is even closer to the children's hospital!) and thought about making an offer on the spot. But I thought it prudent to actually see what else was out there. (Kyle may have disagreed). 

And we spent the next day looking at condos. We limited our search to ground floor units and units accessible by elevator. And we saw some really nice (slightly more affordable) condos with tons of space and three bedrooms, but every single one of them would have all been really annoying to try to live in for accessibility reasons.

First thing we learned - there’s no such thing as an actual ground floor unit in this area. The ground floor is always the parking garage. And those parking garages pack cars in like sardines. There wasn’t a single handicapped space in any of those garages, though there was often a van accessible space in the guest parking lot, but only one and usually it was already occupied when we arrived, suggesting strongly that we would always be competing with someone else for that one spot.

Parking in the assigned space always would have meant stopping the van in the aisle, unloading Cyrus and then just leaving him there in the aisle (because there was no space to tuck him between cars), then getting back in the van and parking it, and finally exiting the vehicle and retrieving Cyrus. 

And then elevators! The elevators were so small. Fitting the wheelchair and three adults in the little compartment was a squeeze. I don’t know how anyone gets their furniture into their condos using these elevators, but I figure mattresses are flexible and pianos aren’t actually that big even if they are heavy. But Cyrus’s stander? I don’t know if it would have fit. 

Cyrus's Stander

There was one complex in particular where you exited the elevator into a lobby for your floor, then you had to walk through a stairwell into the hallway that led to the actual condos. And the stairwell was a problem because it had heavy doors that were always trying to close on you. And you would open the first door, push Cyrus through, but then had to continue to hold that door open so it didn’t slam into Cyrus because there wasn’t enough space to push him past it, while trying to reach for the second door that was just slightly too far away to reach when you’re behind Cyrus. When you had both doors open, you had to hold them awkwardly, while also getting Cyrus moving fast enough to make it over the threshold. It was awkward and it was irritating.

With one exception, the condos had less wheelchair friendly layouts as well with narrow hallways or tight corners. There was one condo that had a friendly layout, but it was a really small condo with only two small bedrooms. And it felt like our current apartment was able to meet our needs better than this condo would, so it didn’t really feel worth it to move.

We could have overcome these small irritating obstacles. If we had really needed to, we could have figured it out. But we also knew that they would serve as constant and daily irritations that would make any stressful period that much more challenging and would just wear away at our emotional health and resilience over time.

The whole experience was very illuminating for us in how difficult it is to find accessible homes if you’re physically disabled in some way. Especially when you live in a hilly area. And to some extent I already knew this, but when you live it, it’s more real. And it just made me sad. 

But looking at those condos solidified one thing for us personally. We were definitely willing to make an offer on the one house! 

And if our offer was not accepted, then we were committed to waiting until there was something that did meet our needs because if we were going to buy something we should at least want to live there.

Much to our shock (and the selling realtor apparently), our offer was accepted! It is likely because they liked our offer letter that told Cyrus’s story because apparently they had refused higher offers. The whole process from looking at prices on a whim to applying for a loan to looking at houses and then getting an offer accepted - took 16 days! 

And then suddenly we had to move! I wasn’t ready! I thought we were going to have months! That’s what everyone had warned us about.

There were lots of bumps through escrow both with getting our loan finalized and then with the house itself. There were like four different instances where I was confident that it was all going to fall through. 

And right in the middle of this crazy intense process, the school started again. And if emergency distance learning took less time than a traditional teaching year, distance learning in the fall was an entirely different beast because we were now offering live instruction to our students. 

The planning load alone made me feel like a first year teacher all over again. I’ve gone back to having to stay up impossibly late making sure lessons are ready for the next day or to get grades in on time. But I also had to learn how to deliver content in this new medium of Zoom, (like how does one do physics labs when no one has the same stuff at home?!), learn how to build relationships when you can’t talk with students one on one very easily, and how to manage a virtual classroom. 

Though trying to teach high school physics is difficult when your son’s feeding pump goes off at semi-unpredictable times, or when your 18 month old daughter runs in and wants to shout her ABC’s or sing Baby Shark at your students! (They apparently love her, and told me they were okay with learning no physics whenever our childcare fell through. Sweet though they are, I happen to care about their education!). 

Luckily, I’m a tech native and not a perfectionist, our realtor was magic, the sellers of the house were incredibly kind, and the one other family that we’re in regular contact with through a nanny share was enthusiastic and kind enough to help us move! And in the end, everything worked out! And we live in a gorgeous house now!

Somehow… It’s still rather surreal.

  

We settled into a new routine. Life does not feel as quiet or slow as it did in the fall. I still get to eat lunch with my husband, but I’m definitely working full time plus extra again. Eliana still goes to the nanny share most days. Cyrus has his own Special Day Class Distance Learning! And let me tell you, his distance learning program this fall has been amazing! He loves it!

Basically, his teacher sends us a pack of art projects and lesson materials every two weeks or so. (Before you give your child’s teacher too much hell for not doing this for you, keep in mind this teacher only has like seven students total).  And then during the zoom class, she does the videos, songs, directions, and movements that they are trying to teach the students. But she directs Kyle in how to do the activities with Cyrus! So now, instead of a nurse guiding him through his art projects, he gets to do it with dad!

SDC class in the Fall!

He totally lit up this fall with this kind of instruction, and dad is his new favorite person all over again. 

We did pretty well until November, during which time we all got sick (with a rhinovirus - not Covid) at the same time. It made for a really rough week, but we all recovered. Or so we thought. 

Just a normal [sick] day.

Feel better, Cyrus!

Cyrus ended up relapsing and getting pneumonia. It is likely that he aspirated his own phlegm from the sickness into his lungs, then bacteria grew in that fluid, and then turned into pneumonia. We managed to keep him home for a week caring for him ourselves, but then after a really rough night we sent him to the emergency room. He was the sickest I’ve honestly ever seen him, and I was beyond terrified. But as sick as he was, he also ended up having a remarkably fast recovery once he was in the hospital with round the clock care and on antibiotics. 

He was home for a few days. Four or five, and he was breathing better, but he wasn’t coming back. Like he wasn’t engaging or smiling. He was flat and emotionless. Usually when he’s been sick, he’ll have this phase of what I call “post illness joy”. And that just wasn’t there. Then there was a day where he was crying constantly and his belly and one of his arms were really swollen. And he had stopped pooping entirely. 

His sister dotes on him no matter how he's feeling! <3

She is just the sweetest!

Worried about a blockage in his GI track, he went back to the hospital. They determined there was no physical blockage, but rather just a build up of gas that wasn’t able to make its way out of his system for reasons that were unclear. They did a ton of tests, and they found something! 

He had c. diff! 

Fucking c. diff! 

Ugh!! It made sense (the antibiotic course makes him vulnerable to it), but man I was pissed! So, now we’re back to operating on c. diff protocols. He has a new med that initially has to be given four times a day. We are changing diapers with disposable gloves, and afterwards hand sanitizer is not enough. Hands have to be washed for thirty seconds minimum. The floor and the wrestling mats are getting steam cleaned regularly. Anything that gets any poop on it has to be cleaned with bleach, and his laundry has to be separated from everyone else’s, and clothes that get any poop on it has to be bleached.

Do you know how hard it is to get bleach wipes right now? I’m sure you do.

Anyway, once we got Cyrus’s new meds (with a lot of grief from our insurance company - I wrote a rant about it, but I’ll spare you), he got to come home again. And we did finally see some peaks of that post illness joy!

There's your smile!

The last two weeks have been a lot better for all of us really. (Well, Elli is in the last phase of a bottle wean and hating it, but otherwise, she’s loving life!). We were finally able to start unpacking again and everyone has a room now! We finished Elli’s room last week. We’ve finally figured out how to organize the kitchen to get all the pots and pans in a cupboard. And we’re just starting to put pictures up on the walls! It’s starting to really come together!

Overall, we feel rather fortunate during these times, and we try to take nothing for granted.

We are wishing everyone so much love, health and resilience for all the foreseeable future! Much love!!