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Our Full Lives

An Art Gallery Event Featuring Children With Medical Complexity and Their Families

In partnership with Seattle Children’s families, Dr. Jori Bogetz, researcher at the Treuman Katz Center for Pediatric Bioethics and Palliative Care and organized with Soulumination, the Courageous Parents Network and the University of Washington Disability Studies Program, hosted the “Our Full Lives” gallery: an art gallery event featuring children with complex medical needs and their families.

This gallery was created to showcase the lives of children and families of children with medical complexity by highlighting the richness of their experiences and individuality. The children and families featured selected photographs they believed best represented their child’s full life experiences and served as celebration of who their child is.

Read on to learn more about their stories.

Charlotte's Story

Three images of a young girl being kissed by her parents


Listen to Charlotte's story:


Throughout pregnancy and at birth, the only thing Charlotte (“Cha Cha”) had in common with her big sister Maddie was that they were both 7 pounds, 11 ounces, when they were born. Maddie was shaped like a beach ball and Charlotte was like a string bean – long and lean. We couldn’t wait to welcome Charlotte into our three-person family.

At three months, on a trip to Hawaii sitting on the beach in the sun, one of us noticed that Charlotte’s pupils did not look normal. She was also very fussy, and not sleeping. We called our pediatrician, who told us we needed to get Charlotte checked out immediately. She was found to have bilateral cataracts. That was the beginning of many tests, biopsies, specialist visits and hospitalizations throughout her lifetime.

Early on, Charlotte’s biggest issues were sleep, low muscle tone and gaining weight. We spent all our time trying to feed and comfort her. She would gain an ounce, we’d have a party, and then lose it again. She was failing to thrive. Once she got a tracheostomy and was supported by a ventilator, it made her nutrition and weight gain much easier since she didn’t have to work as hard to breathe. She just blossomed into this big, pudgy, angelic little girl. We began our journey. Learning how to provide all the care for her new medically complex needs. At first, we were scared and didn’t know how to communicate with her, but we learned how to do it as our “new normal.”

Over the years, we taught our family, and care community how to care for her to make things as easy and consistent for Charlotte as possible. These included not only her beloved home nurses but also residents, fellows, therapists and countless others. This was so that we all could take the best possible care of Charlotte – to advocate for her, be her voice and bring her joy and happiness.

One of the things Charlotte enjoyed most was her every other day Cha Cha spa. At home, we would give her a thorough shower. We would wash and condition her golden curly hair with tropical-smelling shampoos. We spent lots of time washing her chubby cheeks, spicy armpits, cute bottom and especially her hilarious toes. She would often be so relaxed she would fall asleep!

It was always a pleasure to snuggle her back into bed with fresh sheets and clean tubing for her medical equipment. Sleep was hard to come by, so we were thankful for this peaceful time with her.

We also loved to read together and sing together. Charlotte loved music, it soothed her. When Cha Cha was awake and active, we liked to play by putting her hands in squished avocados or playing ball with Paul. They had their own version of catch. We hung colorful toys above her head that lit up, and we built her a push-button home theatre. While her room was essentially an ICU, we did our best to make it a little girl’s room, all things that we knew she enjoyed and that gave her the fullest experiences of life.

As we were mindful to keep everything clean around Charlotte to prevent her from getting sick, we rearranged our lives to keep her as healthy as possible. We didn’t go out much and lost some friends who couldn’t deal with all we were facing with a fragile child. But we also gained so much because Charlotte brought people in. A hair stylist who feared all things medical, but came and cut Charlotte’s hair every month for five years in our home. EMS workers, and the local fire station staff who would come to the house for “wellness visits” to read to Charlotte and check in on all of us. Our local pharmacists made sure Charlotte had her many medications, no matter how difficult the insurance. When we rolled her in one day so they could finally meet her, none of us had a dry eye. We all felt so cared for.

Charlotte also had incredible relationships within our family. Charlotte and her dad would play catch with a soft pink ball with small spikes. He would toss it onto her bed, and she would take her time to then bat it all over her room so he could go chasing after it. She loved his cuddles after a day at work or time away. Her sister Maddie would be found sleeping under her hospital bed at home, cuddling with her or reading one of her many books. Charlotte visited Maddie’s fifth-grade class so that her schoolmates could meet her little sister and ask questions about her care needs. We brought Cha Cha out to support Maddie’s school fundraising efforts and received a medal for being the best cheerleader and supportive sibling. These were special moments that helped us share Charlotte with her community in a way that was open, honest and loving.

Charlotte also had her own way of telling you how she felt. She would bat her eyelashes, start cooing and get excited when her dad would come home or if there was music playing that she liked. She loved to be read to and to give kisses. She would also give the stink eye if she was displeased, which was often the case with PT and OT – activities she preferred to skip!

One of our favorite memories was our Make-a-Wish trip to San Diego to the zoo and Sea World in 2005. Maddie broke her leg a few weeks beforehand and so we took both girls in wheelchairs. We’ll never forget the expression on Charlotte’s face when she was able to touch a dolphin for the first time. She was so joyful, and we had a blast. It was the last real trip we took as a family.

When Charlotte’s health began to decline, we struggled to prepare ourselves for what was happening. We had a lot of support through palliative care and Seattle Children’s as well as our pediatrician. Her health had been so up and down, and we had many “dress rehearsals” but it felt impossible to prepare and comprehend that she was approaching the end of her life. As a parent it is a natural thing, to find it unnatural to accept. The head and the heart are slow to connect when losing a child. On the day Charlotte died in 2010, our extended family had gathered at our house. Like other close calls we had experienced before, we had many people supporting us, holding us up and tending to Charlotte and our family. Charlotte died peacefully and we consider the circumstances of her death to be a miracle – just as her life was.

We continue to talk about Charlotte, to keep her story alive and her presence felt. We include her in our lives – to continue all the good she did in this world, the kindness and showing up that happened around her. We keep her light shining.

To us this is everything.

Kevon's Story

Three images of a young boy with various family members


Listen to Kevon's story:


The best way to describe my son is cool. He’s just so chill, but also, incredibly smart. He knows everything that’s going on around him. You give him processing time and he will understand what’s happening. I tell people, if you give him that time, let him know what’s going on and involve him, he’s all in. I’ve trained my family to know just how smart Kevon is, but I’ve found outsiders sometimes need these extra reminders to not discount his abilities.

Kevon was born on October 6, 2017, through a C-section delivery. When I was pregnant, everything was normal — I did all of my regular ultrasound appointments, all the basic genetic testing that’s required, and nothing came back concerning. Then, when I went into labor, the hospital didn’t have any rooms available, which I had never heard of happening. They decided to slow down my dilation and labor by giving me a medication they said was safe. And so, when Kevon was born, he didn’t cry immediately, and that scared us. However, after he was patted a few times, he finally cried, and then I cried when I heard his cry. The first few days we had to feed him through a syringe because he was having troubling latching. He also was shaking nonstop, which the doctors said was likely a side effect from the meds they gave me to slow down my labor. So, we were discharged as a regular C-section.

We thought the shaking would stop, but it never did, and he continued to have eating issues. He started breath holding and choking on his milk, so we got a referral to Seattle Children’s to do a swallow test. The results showed that Kevon was aspirating everywhere. That’s when we got the NG tube. After that, everything kind of happened stepwise. His seizures were diagnosed when he was two months old because initially he was too small for the EEG machine to detect them. Once diagnosed with tonic-clonic seizures, we got referred to neurology and genetics for testing because they wanted our whole family — Kevon, me, Kevin (Kevon’s dad) and Kariel (Kevon’s older sister) — to get extensive genetic testing to understand why Kevon was having seizures and shaking. It took about three months to get the results back. Even after they were explained to us and we had a diagnosis in hand, there wasn’t a handbook to prepare us for everything to come. When Kevon was 1½, he went into respiratory failure, and we were in the hospital for seven months trying to decide if Kevon should get a trach. The palliative care team helped us set our goals and vision for Kevon going forward. The process included getting the trach, letting him recover, taking all the necessary trainings and then making sure we had a home care team before discharging.

Fortunately, our immediate family, they’re all kind of local, not too close, but close enough to be able to just come by whenever they want. Kevon’s care is really such a family effort, you know, it takes a village. My sisters, they always coordinate their schedules so that they can take me and Kevon to our appointments. Or, sometimes, one sister will stay and watch my other kids, while the second takes us wherever we need to go. My sisters and mother-in-law are all trained in suctioning, refilling and stopping Kevon’s feeds, and telling if he’s in distress, basic stuff like that. Even my kids, they have always been so hands-on, especially on nights when we don’t have nursing. They’re like, “Mom (or dad), what do you need help with?”

My daughter, Kariel, is a little bit tough, she doesn’t really just say “I love you” or hug you. So, I think her way of showing Kevon love is helping with his cares, like getting his toothbrush or helping with his trach care. Then, my youngest, Kevari, will kiss Kevon and lay with him at night, but he also just learned how to refill Kevon’s milk. When we are out in public, they’re both wanting to push Kevon in his chair, they make sure he’s buckled safely, and his wheelchair is locked when stopped so he doesn’t go sliding. They both really pay attention to him and want to involve him in whatever is going on. Kevari’s newest thing is saying what he thinks Kevon is thinking. So, the other day, I was just cleaning, and Kevari goes, “Mom, Kevon is looking at you and he said he loves you and you’re the best mommy ever.” And my heart melted. Kevon is non-verbal, but my kids are learning his cues, taking them and applying it to what they think he would say. It’s just really amazing to see that.

Another support network, outside of our family, are Kevon’s teachers and home therapists. Kevon has a lead teacher and co-teacher that come four days a week to work with him on various things. Then, each day he has either his vision therapist, speech therapist, physical therapist or occupational therapist. They each bring something different, whether it be tools, knowledge, strategies, on how we can better support and communicate with Kevon. Right now, we are working on getting him set up with a Tobii Dynavox communication device. This device is a tablet controlled by Kevon’s eyes. It’s all eye muscle memory. Right now, we’re just learning and teaching him how to navigate it, and then we’ll build up his communication from there. It’s amazing how quickly he’s picked up different skills with his eyes, like he’s able to calibrate it all on his own, tracking the device, and showing us what he likes and doesn’t like. There’s also a setting where you can see exactly what he’s interested in through a heat map of what he’s looking at — the more he looks at something, the redder it gets. His teachers then use that information to build his curriculum for that day. Several of his nurses, teachers and even his vision specialist have told me that calibrating someone’s eyes is one of the hardest things to do on the device, so the fact that Kevon got it down so quickly is such an incredible skill.

Outside of school and his therapies, we go on a lot of family outings. We love to go out to eat as a family. Kevon has a wheelchair that slides right into the table, so he’s right there with us. I’ve been trying to educate myself on accessibility and getting him different wheelchairs, so he can 1) be comfortable and 2) be a part of everything that we’re doing and see the world around him. We also enjoy exploring parks — water and regular. Actually, we just found an accessibility park where we can push his wheelchair onto the playground, and he can go on an adaptive swing or merry-go-round. Places like this are so important, also, for my other kids to see. You know, Kevon’s constantly seeing their world and what they’re doing, but it’s important for them to see his world and what he can do.

Kevon and I have this bond. I know what he’s thinking by feeling him or looking at him, like I know when he is content because his whole body is relaxed. One of his favorite stimulation areas is his tongue, he likes things on his tongue. So, at night, when it’s quiet and it’s just me and him, I’ll lean over and give him a hug, say goodnight and “I love you.” He then puts his tongue on my cheek, like he’s trying to lick me, but it’s almost like he’s trying to kiss me and tell me goodnight too. It’s like he’s saying, “Mom, I know you’re here and I love you.” 

Luca's Story

Three images of a boy with various family members


Listen to Luca's story:


When I was born, my mother remembers willing herself out of bed after her C-section to come see me. I was born with spina bifida and was rushed to the nearest children’s hospital shortly after I was born to prepare for my first of many surgeries which I had when I was only two days old. Since then, I have survived at times when my parents were told there wasn’t much else to do – and my positive attitude, family support and perseverance are what have really gotten me through.

When I was young, my family remembers me as a chill infant and if it “wasn’t for the medical stuff,” I’d have been the easiest baby ever. You could put me down in a bouncy chair or in my bed and I would observe and eventually fall asleep on my own. This was in contrast to my older sister Freya, who is three years older than me, and also to my younger sister Caia – both of whom were “full on” when they were little. In all seriousness, though, I am very close with my sisters, and they look after me and are my most beloved playmates. We like to give each other a hard time and make a lot of jokes together, but we really love each other and are good to one another.

Throughout my early childhood, I had many surgeries and was in the hospital a lot. I often didn’t want to tell my parents or the medical staff I was uncomfortable or having pain because I wanted to leave the hospital as soon as possible. I’ve been through 39 procedures (21 neurosurgeries) – sometimes more than nine surgeries in a year – and it was a lot to recover from. Despite this, I’ve been able to bounce back and learn how to cope as best I can with the surgeries and therapies I need. This has required a lot of patience and time with my family figuring out what works best for me – but nowadays we all know how to make it work.

My family moved from Ireland to Seattle in 2016 and we’ve called this area and community home ever since. Between my homeschooling and therapies, we do a lot to support the organizations that have supported us! Some of my favorites have been becoming the police chief at the Lynnwood Police Department in 2018 and filming information about my life with my Canine Companions service dog, Atticus, to fundraise for their program this year. For my Make-A-Wish I went to Disneyworld and met Spiderman. I don’t know exactly what I like about him, but he is funny and a bit silly like me. I also like to help my sister’s Girl Scout troop, which is exclusively for kids with chronic medical conditions. I also go to Camp Korey, where I get to do archery, and I play wheelchair basketball. These experiences have made my life full and so much fun!

When I’m in the hospital my favorite people to see are the therapeutic gaming specialists who are within the Child Life department at Seattle Children’s. I love Minecraft and the gaming specialists have supported me to be able to use the game to help with the symptoms like headaches I have when I’m in the hospital. Those are the times when I just want to be left alone, so having the Xbox really helps. I like supporting the therapeutic gaming team and I’m glad I can make things easier for other children going through things that are similar to what I’ve been through.

When I am feeling well, I love being social, meeting people and going places. You can often find me at hippotherapy or Rehab Without Walls teaching students and getting stronger. My parents joke that they can’t take me to the grocery store because they will be there forever talking with everyone I meet!

Ultimately, what I’ve learned is that It’s important to give back and contribute – especially for the charities that have given us so much.  Being a part of the community is something that brings me and my family a lot of joy and happiness. I love to give hugs – and some people say my smile lights up the world around me. I just love being a kid, the things I enjoy, and living this “one of a kind” life!

Rocket's Story

Three images of a boy with various family members


Listen to Rocket's story:

I gave birth to Rocket on June 8, 2012. He was a healthy full-term baby who came out basically right on time. I remember him being a pretty easy baby, like he slept really well and smiled a lot. It wasn’t until he was about six months old that his dad, Jeff, and I realized the typical newborn “wonky” eyes weren’t going away. So, we started consulting his pediatrician and decided to set up an appointment with ophthalmology to get his eyes checked. He ended up needing an MRI and that’s when we saw how different his brain looked. By the time he was one, we got set up with the early intervention program – Birth to Three.

Aside from the stress we felt about his brain and developmental delays, our routine was still relatively normal, and Rocket continued to grow. At three years old, we enrolled him in preschool, and he quickly got sick, which triggered his first hospitalization. That literally changed everything. He had to be intubated for the first time and got a feeding tube. We were admitted for about two and a half weeks. Fast forward to today, Rocket is 12 years old, and just got a surgery in early May to remove his saliva glands. Before being admitted for a two-week course of IV antibiotics he needed before the surgery, he got a cold, so we had to stay there for about three weeks. After discharge, he was doing so good for about a month, we did so many fun things. However, he recently started sounding junky again, which has been devastating. He is still doing better than he was before his surgery, but he's doing worse than he was a month ago. These ups and downs are common for us, but it’s hard to not have high expectations when he has a good month. We get excited when he has a good day.

A typical day for us, when Rocket feels well, starts with us checking his blood sugar, giving him his morning meds, doing his first respiratory treatment. Then, on the weekdays I have to work, so I start work and Rocket either comes and sits with me, has school at home or he spends some time in his room watching TV. He has PT twice a week and usually a few doctors’ appointments. In the evening, we like to go for walks and hang out and watch shows, he likes the chase scene in Terminator 2, which is adorable.

Since 2017, Rocket has gone to hippotherapy once a week. His favorite part is when he gets to go fast and do turns with the horses. Something people don’t realize about Rocket is that he loves roughhousing. He loves having balls thrown at him, obviously not hard balls, but soft ones — he thinks it’s hilarious. He loves when there are loud noises all around, like people stomping through the house on purpose, that cracks him up. Rocket’s dad, Jeff, loves to play with Rocket on the floor and make him laugh. Rocket loves anticipation games like counting to three and then tickling him. Or stomping up behind him and kissing his cheek. There are 100 different things to get him to laugh. You know he’s happy and excited when he smiles, laughs and flaps his arms. People always assume that he’s super fragile and you need to be gentle and quiet around him, but he is like, no, please, I would like to roughhouse with everyone.

On Wednesdays, Rocket and I go into the office I work at. While I work, he plays with toys (his favorite is the infant keys), or sometimes my coworkers will come in and play with him. I began working at my company in 2014 as a temporary hire because my aunt worked there, and they needed some help with a project. After my work on the project was complete, they were looking for someone, and the boss offered me a position, but I couldn’t accept because I had Rocket. However, one day, right before completing the project, I came in to finish up something on it and I had Rocket with me. My boss asked me if Rocket was “always this calm,” and I said “yeah.” So, he asked everyone in the office if they wouldn’t mind if I brought Rocket in with me, and nobody had a problem with it. For a while Rocket came into the office with me every day, but since our office moved in 2021 from Seattle to Woodinville — a much longer drive for us — I asked for a hybrid schedule. Now, we only go into the office once a week. The other days, Rocket and I are home, so we are around for his schooling and therapy appointments.

That said, twice a week, usually on Monday and Tuesday mornings from 7 to 10 a.m., his tutor comes and helps him with schoolwork. Right now, they are reading Harry Potter. Rocket is also working on counting with blocks and his letters – although the alphabet isn’t his favorite. It was really hard work to get him schooling at home and a consistent tutor. However, with the help of his amazing teacher, Katie, and a Seattle Children’s social worker getting involved, the school finally found Rocket a tutor. Funny enough, his tutor is actually a retired children’s pulmonary NP and the mom of Rocket’s speech therapist.

When I think of who makes up my and Rocket’s support system, I think about our family, friends and Rocket’s doctors and teachers. In our family, we have Jeff and I, then my two older sons, Dylan and Ethan, who can watch Rocket for short periods if needed. Then, it might sound sad, but a few of his doctors are a big part of our support system — they’re just so nice to Rocket and listen to me. His pediatrician, Dr. Fillipo, is really great. He has even ridden his bike to come see us when Rocket was sick and inpatient at Seattle Children’s. I’ve also built a support network by reaching out to parents online. I met my friend Effie by listening to her podcast, called Once Upon a Gene, and going to a walking club she started for parents of kids with disabilities.

It would be cool for people to know that when Rocket feels well, we do so many fun things. Recently, I took Rocket to this rock-climbing event with Courageous Kids Climbing, where they put him in this chair and hoisted him up the wall. They were so nice, they asked, “do you think he wants to go slow or fast?” and I said, “well, faster.” Then, they asked, “Would he want it smooth or more of a jerky motion?” and I said, “jerky.” He went up so high — all the way up to the top — and they turned him, so he could see the whole view around him. He was kicking his legs, having a great time, and it was very cute.

Honestly, everything is cute about Rocket. My older son was like, “How are even his ears cute?” and I was like, “I know, even his ears are cute.” He’s just the cutest.