Damn Rona

I’ve been buying hand sanitizer by the gallon for the last 9 years. My children have been able to properly wash their hands, without prompting since they were 5 and 8 years old. My daughter wears a mask in public during flu season and my son schools from home when cases of influenza are high. I’ve sanitized my shopping cart without exception for the last 9 years and just in case the store is out, I have my own sanitizing wipes in my purse. We check restaurant health inspections before we dine out and we avoid dining out when cases of community spread viruses are high. When we travel on an airplane or attend a movie I wipe down the area where we will be seated with those same wipes I used in at the grocery store.

For a long time, I’ve dealt with judgement from passers by of being that over-protective germaphobic mom. The reality is I basically believed that to an extent myself. Until one infection that Faith had left the greatest doctors stumped and took the CDC eight weeks to identify. That hospitalization left me studying how I can make sure I am on the top of my game when it comes to viruses and germs that can harm a weakened immune system.

The reality of having a child diagnosed with a life threatening illness hits you in waves. Other parents from our community share that had they known the whole picture from the beginning it would have been too overwhelming to deal with. I don’t disagree with that. Had I known the day we were told Faith was sick that she would go through so much I’m not sure we would have handled it all the same way. We often had some time to get used to doing things differently than everyone around us.

We also had to get used to so much loss. Loss of normalcy, loss of control, loss of friends. While some things you never get used to…..it still makes me feel like I can’t breathe every single time we lose someone from our medically fragile community. These moms and dads we stand with in the scariest of times become our community. Where as a parent of a healthy child you make community with your sons football parents, we make community with our fellow warrior parents. We suffer with them, when they go through seasons of heightened illness….we cry with them over the little stuff that seems so important sometimes…..like another birthday in the hospital or another scan……and when there is a loss we grieve.

We grieve for the child. We grieve for the siblings. We are sick with grief for the parents. It makes you relive every close call your child ever had and every like diagnosis of the loss child. You have a burning sensation in your throat for days and you dread the thought of telling your daughter about her friend she met in Denver who died from a disease your child has too. And just when things start to feel close to ok again, it happens again……and it doesn’t stop.

I’ve considered separating myself from the community, because the grief is so consuming at times. But the reality is, these are my brothers and sisters in life. They understand our journey with no explanation. They understand what I mean when I say, I feel like I am unable to even utter the words to explain where we are with this infection. That my tongue feels like it is cemented to the roof of my mouth and to separate it will cause me so much harm……I can say this to my medical moms and they say, yes girl, I know.

Four years ago when Faith was spending more time in the hospital than she was at home we made the what seemed impossible decision to fully homeschool her. The truth was she was picking up more secondary infections at school than we could successfully deal with at home. She was sad. I was sad. I was angry that her body wasn’t able to work well enough for her to be at school. Truthfully it was a she’s lost so much, how can she loose this too….but that kind of thinking really doesn’t work for us.

We have really had to focus on what we have rather than what we’ve lost. As Will and Faith get older I realize all of this has had somewhat of a silver lining. My kids are fantastic.

Yeah, I know, everyone thinks their kids are, but they really are. They are 14 and 17 and they love each other more than anything. Not only are they best friends, but they are one another protectors. They value family and the relationships they have with the people they love. They are empathetic and caring and they always put others first….sometimes to a fault. They both have a desire to serve others and to do their part to make the world a better place. If you don’t know them you have to trust me here…..they are not your average human.

Often people remark to me what a great job we’ve done raising our children. And while there’s a small piece of me who wants to say, THANKS……its hard for me not to explain. The most important job we had as parents to Will and Faith was to love them through all the loss. As parents, we want to fix it. We want to give our children the world and make sure they have what they should have. I couldn’t give my daughter the healthy body to attend school with her friends. I could love her though the tough decision to keep her home. I could love her through the loss.

I know that so many of you are struggling with making the right decision for your children this school year. And while I am not an expert on Covid I am an expert on having to live the way you’ve all been introduced to living over the last six months. I feel like there is so much I can offer you as far as staying sane and making sure you don’t allow this season to change who you are at your core. But that’s not the message I have for you here.

My message is this……love them though it. Your children who are not likely accustom to life with a lot of loss are feeling the loss this year. Regular school, normal hangouts, mask free visits with grandma, graduation, the list goes on and on. The loss is all around us. And while it’s easy for me to sit back and say, it’s a year guys, you can do this…..the reality is, we have had so much practice and in the beginning it didn’t feel easy. What has always felt easy, was loving my children through the loss they were dealing with. Because often their loss is your loss so your suffering together.

Faith had a pretty big medical scare recently. We have been dealing with serious health challenges for so long and this had me on my knees. Faith was septic and had a very high fever, she was saying so many things that made no sense, but at one moment with doctors and nurses surrounding her in the resuscitation bay she grabbed a hold of my face and said, I am so sorry if I die mom, please keep living and make sure Will is ok. Promise me.

I have been known to pass out and when she said those words, I felt my hearing leave and the room was moving around me….something gave me the strength to pull myself out of it. I knew I needed to be present with her at that moment but my body wanted to fall onto the floor. It is amazing the strength you can show as a parent when you feel like you can’t for one more second.

She turned around pretty quickly and was out of the hospital in less than a week. I have not healed so quickly. I still am having trouble sleeping, I can’t get that conversation out of my head and the dialogue in my head over that whole illness make my legs weak. She said to me a couple of nights ago, its way harder on you than it is on me…..I don’t remember half of what happened…which is good, since I promised her a kitten.

My message for you is simple…..they will get over this way before we do. Kids are resilient as hell. They will learn from the loss and be better for it, as long as you as parents love them through it and allow them to grow from it. The best advice I ever got from one of Faith’s doctors at Mott was….since you can’t fix it, roll with it. Meaning, at some point we have to stop talking like all of the precautions we are taking are the end of the world….this isn’t going to be a disease you are fighting with your families for the rest of their lives…..so stop talking like it is….

My girlfriends daughter was exposed to Covid and she started calling the virus Rona……since then we’ve coined the term Damn Rona……in this house. With our life experience we’ve learned its best to talk it out….the losses that are happening because of Rona…..No Grad Party for Finn….Damn Rona, No summer vacation……Damn Rona…..you get the idea. When making your decision for the upcoming school year, just remember there is no right answer. Don’t put so much pressure on yourself. It will be ok. Your kids, while they will experience another loss, will be ok…..because you will love them through it. Damn Rona.