For the past week or so, I’ve been inundated with calls and texts from well-meaning loved ones. All of them checking in to see how we are holding up under the stress of the current pandemic and all of the restrictions it has brought with it. The sentiment is sweet and all, but really our life hasn’t had to change all that much. For us, social distancing isn’t new. It’s business as usual, and it’s why my daughter is still alive.
7.5 years ago I gave birth to my first child, Lila. Lila was born full-term, but when she came out she was very weak and small. She had a heart defect and was unable to eat by mouth. After a very exhausting, and confusing week; she was diagnosed with Full Trisomy 18. Trisomy 18 is the stuff of nightmares for new and expecting parents. The research that exists is outdated and minimal. Approximately 5% of these kiddos live to see the age of five because most doctors erroneously believe it is an automatic death sentence. Because of this, T18 babies aren’t often offered appropriate medical care and they die from the anomalies caused by their genetic disorder; such as apnea, heart defects, and complications of a much weaker than average immune system.
As soon as Lila was diagnosed, my life forever changed. Lila has a congenital heart defect, and trisomy 18 causes her immune system to not work as well as other kids her age. Because of this my little family immediately went into a mini lockdown, that has become stricter as needed throughout the years.
You see, we don’t just fear this virus. We fear all viruses equally, because even the common cold can kill Lila, and has almost succeeded many times. Last year, we spent no less than 60 days in our preferred hospital’s PICU. It was definitely more than that, but I quit counting because it’s depressing to think about.
For the better part of a decade now, we have limited outside activities. Lila never goes to the store. Ever. People are gross and they always want to touch her, please don’t touch babies and kids you don’t know. It’s bad juju and it places an unnecessary risk on my child. Because many adults don’t know to keep their hands to themselves we generally don’t risk it. We limit trips to germ hot spots like zoos, playgrounds, and whatnot to special occasions only. If anyone I know has been sniffling, we skip their gatherings. We practice excellent hand hygiene always, and we strictly limit the people that we allow to enter into our home to those that we know we can trust to abide by our militant visitation policy.
As Lila has gotten older, she has started to have a more difficult time recovering from these illnesses. Because of this, we have had to buckle down on our outside of the home activities even further. Her average hospital stay back in 2017 was around a week. Now, it averages 3 weeks and her recovery time at home, this last time, took around ten weeks for her to be back to normal. Because of this, we made the difficult decision to remove her from school. It got to the point that she was sick, more often than she was healthy.
Many people wrongly view public school as free daycare and don’t realize that sending sick kids to school can kill my child. It became so bad that two years ago I left the best coworkers ever, and a job that I adored to stay home with Lila. Her illnesses were so frequent that I just couldn’t call myself dependable enough to continue working at a job that required the ultimate consistency. It was heartbreaking, but in tough times, we all have to make tough choices that benefit the greater good.
I definitely miss leaving my house whenever I want, but that convenience isn’t nearly as precious to me as seeing my girl’s smile every day. I don’t stay at home for me. I do it because Lila won the genetic lottery at conception. With all that extra cuteness her extra chromosome gives her, it also gave her a burden of a lifetime of severely struggling with viral illnesses. She can’t help that her immune system sucks, but we can help her and others like her to stay healthy by staying home. I keep hearing that “only the vulnerable are at risk” from this pandemic. The thing is, Lila is extremely vulnerable. I have no doubt that she could very likely die from contracting this virus. Please think of her when you’re going to the mall with your friends, or going to the nail salon. Your carelessness could literally kill my child, and I’m not even being dramatic.
Seriously. Your “only” is my EVERYTHING. Please stay home.
