Dear Livy,

Having the nightly news give updates on the number of children with RSV has felt personal. Almost violating. Hardly anyone knew what RSV was when you and your brother caught it. When I tried to explain that Epilepsy and RSV can be a fatal cocktail and is why you died, most people look at my sideways. Like, how did that happened. How did you get so sick without me knowing. I didn’t get it either and I’ve come to realize I likely never will, but I try.

I read a lot about RSV, Epilepsy and Schizencephaly. I had no idea how serious RSV alone was. Never mind if you have other chronic illnesses or disabilities that impact your respiratory system.

Throughout the COVID-19 pandemic I’ve thought about what we would do if You were here with us. You required many therapies and interventions. I took you to 2-3 therapies at different locations each week. In addition, we had some services come to us as home and you had services at school.

Kids like you with significant disabilities could not have safely gone to school during the height of Covid. In fact, I’m not even sure I’d have you back in school today. It’s a sensitive issue and could be the difference between life and death. Literally.

Livy smiling with “Juice Bear” hanging out of her mouth.

Last weekend, we participated in Kaiser’s Day of Remembrance. It’s an event that gives me comfort.

The event was put on pause in 2020 and 2021. This year it was online and much shorter in length, but I was pleased that there was something. Not having the event over the last two year has left a whole in my life that I didn’t realize was growing. It made me realize how important having an annual celebration has been for me and my mental health. Living with grief requires that I pay close attention to how I’m feeling and how I’m treating others. Having any type of public opportunity to release my built up frustration and sadness is a critical part of my path forward, but here was a glaring difference at this years event that has made me think about the pandemic and it’s impact on disabled children. Something I have been thinking about over the last three years.

Day of Remembrance includes a slide show of our babies. In previous years there were several

photos of newborns and kids across the age span with cancer, but this year there was a noticeable new group of children includes. Children with visible developmental disabilities.

I don’t know any of them. I have no idea why any of them passed, but I stuck thinking about whether it was Covid or will it be RSV? We’re those kids forced to go to school for services? We’re they forced to get their needs met in an unsafe environment? I don’t know, but it makes me think more and more about how there is so much work to be done in this world before we as disabled people, regardless of age, will truly feel like we belong.

Love you and miss you, Livy.



Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s