This last year has been an incredibly trying year, to say the least. And to be honest, as a parent of a vulnerable child it has opened my eyes tremendously. In the beginning it was so easy to get stuck in the negative. The anti-maskers and the rhetoric that those who are most susceptible to COVID-19 should hide away in their homes. We, the family of a medically fragile child, were constantly told that we should make the changes so everyone else can live their lives. We had to make the biggest changes. And we have.
This came easy since we are not strangers to isolating for the health of our loved ones.
We aren't strangers to cancelled parties and vacations in the best interest of our child.
We are used to sacrifice.
We are used to giving things up.
We've spent anniversaries, holidays, and birthdays in the hospital.
So when I saw social media posts of people upset over cancelling a birthday party, honestly, I rolled my eyes. I was beyond annoyed at the world around me that just didn’t get it. Didn’t understand that thousands of parents have lived like this for the entire life of their child. I kept thinking, couldn’t they do it just this once? Couldn’t they think of the health of others during this worldwide pandemic claiming hundreds of thousands of lives? The selfishness of others had me shaking my head. I couldn’t wrap my head around it. But then I’ve always known that outsiders simply can’t wrap their heads around our lives either. Because unless you live in our shoes, you don’t understand. You can't.
Unless you’ve counted the seconds while you wait for the ambulance to arrive while your son is seizing and turning blue, you might not get it.
Unless you’ve heard the specialist say during rounds to the ICU team “we have to be careful, we might be reaching the point of no return” regarding the plan of action for your child, you may not understand.
Unless your child has been hospitalized for weeks because of a common cold, it may be hard to comprehend.
Because this is the place where we live. We live in the world of worrying about a cold. We live in the world where hand sanitizer, washing hands, and avoiding germs is woven into our daily life. We live in a world of feeding tubes, rescue medications, lab draws, therapies, hospitalizations, worry, and isolation.
Different world. Much different perspective.
It was so easy to feel jealous of parents who didn't seem to care. It was hard not to envy those whose biggest disappointment was cancelling a birthday party. I began to feel so sad for our son. Disappointed that people didn't care about him. Upset that people didn't seem to care if he had to hide away.
But then I started to do what Mr. Rogers said: "Look for the helpers."
A friend from church made me a mask and dropped off a small care package on my doorstep.
A high school friend said she was staying home for our son.
A former teacher of my oldest reached out and said she would be willing to help with anything our family needed.
I noticed more and more social media posts of smiling eyes with masks.
Our family has been beyond amazing. My mother-in-law drops off wine. Need I say more?
In the summer, friends of our oldest son contacted me and asked to do a drive by birthday parade for him since he hadn't seen friends in 6 months.
Medical professionals and first responders are part of our lives, and have always been heroes. But this last year has been more than you ever signed up for, and we are beyond thankful for all frontline workers.
And most recently, my sister's co-worker sent her a text saying that she received the vaccine because of our son. She was on the fence but after a lot of thought, she did it for him. Tears were shed.
Many people can't understand what it's like to live in a world like ours. Honestly, I don't expect them to, because before I lived it, there is no way I could have even imagined what it feels like. I won't lie, the loneliness and isolation this last year have been difficult. Watching others resume life has been hard. Families like mine are barely seeing the light at the end of tunnel. We know it's coming, and we know it'll happen because of all of the helpers.
And if you're one of them, thank you from a family of a medically fragile child.