Here we are, seven, maybe eight months into the COVID-19 pandemic and I think it’s time to once again put this pandemic into a different light. Time again to compare this to raising medically complex kids. I feel like this should have special theme music while you read it. I’ll have to work on that.
Timelines Are Meaningless
At the start of this pandemic, we were dealing with things in weeks. Then we moved onto dealing in months. Now you may find yourself dealing in seasons. Either way, the timeline you were originally given, or thought you had, was meaningless. It’s like delivering prematurely and seeing your due date as the end goal. Or having a clear chemo map for cancer treatment that outlines when admissions happen and when you are home. It all looks good on paper, and for some it might work out that way. But for a lot of people — and always in my house — life finds a way to make its own timeline. My preemies came home months after my due date. They aren’t ‘all caught up’ by age 2, another timeline preemie parents are given. The chemo timeline for my daughter was weeks of hospital stays with a few days at home here and there.
In reality, the timelines are meaningless, and that is OK. You want to make decisions based on what is happening and not based on where someone drew a line in the sand. It can be frustrating to have a moving target. It can be taxing when it feels like this chaos is now your life. In a way, the chaos is your life, and that is OK. Just like it’s OK to not be OK.
My best advice is to embrace the chaos. Become familiar with the parameters of what moving on looks like and start tracking things yourself. The down side to this is you cannot live in denial. The upside is there are very few surprises in this approach. For me the decision boils down to weighing whether I would rather get my hopes up and my heart broken regularly, or would I rather live in reality and be able to see the turns coming. In case you’re wondering, I always choose reality over blind hope. The disappointment that co.es with my blind hope is crushing and it’s not good for my mental health. I need to keep it as real as possible.
Self Imposed “Experts”
I’m sure your social media timeline, much like mine, is sprinkled with new found ‘experts’ in infectious disease. These are the people who suddenly know what doctors won’t tell you. Very ominous, very poorly informed.
In the context of COVID-19, they are the ones who tell you wearing masks will make you more sick; the virus will disappear after X, Y, and Z (none of which involves social distancing, masking, or developing a vaccine); and they try to pick apart every decision you make for your family’s health safety. These people are friends and family members, strangers you randomly encounter, and close acquaintances.
People surface to take on this role during every health issue. If you have typical kids, you probably didn’t know they existed outside of COVID. There are self imposed experts in all issues around health. The woman in the waiting room who tells you not to hold your cellphone while being near your children because of the link to cancer. The acquaintance who tells you about someone who gave birth in the first trimester and the baby is fine now (really, I think they just mix up gestational weeks with how many weeks early a baby was). The person at church who insists a special diet (be it clean eating, low sugar, etc.) is the key to beating cancer. They are the ones who have very little knowledge of what you are actually dealing with, but have potentially life changing advice for you anyway. Many times, their miracle advice directly contradicts what specialists are telling you.
These people all mean well. At least I choose to believe they really believe the advice they peddle and just want to help you. But instead of helping, they become a source of aggravation. And how you deal with that aggravation really depends on when and how this information was shared. The cellphone lady in the waiting room got a casual “thanks for the information” and a private laugh and hard eye roll later. Wrong information sources with a closer connections got a challenge to the accuracy of the information they shared (e.g., a baby cannot be born and survive at 10 weeks gestation, you must have meant 10 weeks early, which is 30 weeks gestation). My reaction always depends on my mood, and how likely it is I will encounter them again.
To Work or Stay Home
When the COVID shutdowns started everyone thought this would be a short-term issue. Businesses temporarily closed, those that could switch to operating remotely, did. It felt like things we could figure out for now. After a while, with kids learning from home, parents working from home became challenging. Kids learning from home and parents required to physically report to work became close to impossible. A lot of parents had to get creative with scheduling and childcare. Many more parents felt forced to make difficult decisions related to working and caring for their children. Do they continue to work as they traditionally did and take on a nanny? Does one of them take a step back professionally to focus more energy at home? Does it make more sense for their family for one parent to resign and stay home with the kids? These alone are difficult decisions, but then they were compounded with pandemic issues of quarantining, and who do you trust to be as cautious as you are. It is a daunting emotional task.
These are the same decisions parents of medically complex kids face. A lot of us faced them before COVID. Some of us had to revisit them because of COVID. I am one of those moms who ultimately decided to put her professional life on hold. My decision was inspired by the attention my kids needed and later reinforced by the overwhelming amount of time I would need to take off to attend medic appointments, therapies, and be present during hospital admissions. There also were issues around who did I trust to learn and feel comfortable enough to take on oxygen management, ostomy bag replacement, tube feeds, etc. That list was short, even more so because most of the list of people who I felt comfortable with, didn’t feel confident enough to step in for me for long periods of time.
But Wait, There’s More
Whether you think about COVID or just 2020, there always is new information coming out. COVID symptoms we initially looked at were cough and fever. Now the list of possible symptoms is at least five times longer. It feels like an infomercial rattling off product features only to follow the list with, “but wait, there’s more.” Always a new piece of information. A growing list of long-term side effects. Really, now is the perfect time to say, “but wait, there’s more.”
Not all parents of medically complex kids may agree with me, but in my experience my kids’ conditions also involve a lot of, “but wait there’s more.”
- Your twins are very early and very tiny, but wait there’s more, here is a whole list of NICU conditions you will experience before you can go home.
- Your son has hydrocephalus, but wait there’s more, he also has CP.
- Your daughter has liver cancer, but wait there’s more, she also needs an organ transplant.
Even now, when things in my house seem to be stable, I brace for the next, “but wait, there’s more” episode. I always expect there will be something else, not that I want it, but expecting it makes the news less devastating. It’s really a prepare for the worst and hope for the best mentality. It seems to serve me well.
My point here only is that life changing events come with universal issues. Whether you experienced these issues alone or you experienced these issues with a nation of others, it all sucks. I make these comparisons to let you know some people have a lot of experience with these issues. To let you know, they are survivable. To remind you, your life and happiness are not tied to ‘normal’ life or expectations. After all, normal is only a machine setting.
Basically, it’s all going to be OK.