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| 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.
