Deciding on the Unknown

COVID-19 vaccines. The constant vaccine debate among parents lingers in the background of these conversations around whether or not to vaccinate yourself and your child(ren) against COVID-19. How do you feel about the regular vaccines? Are you pro vaccine? Are you antivaccine? Are you provaccines, but only if they are spaced out? How do you feel about flu vaccines? And now we add this into the mix.

It’s not just that one more vaccine has been added to the list of vaccines parents already need to decide about whether and when to give their children. This one has the added questions of safety. Was it tested enough? Is it safe? Do my kids really need the vaccine when they are in the low probability of being affected? Do I need to get it when I’m a healthy young(ish) adult? So many factors to consider. So many unknowns.

How do you possibly make a decision when you feel like you don’t have all the information? It’s tricky…tricky, tricky, tricky. And now I want to listen to Run DMC. But back to the topic at hand. How do you even begin to make a medical decision when you aren’t a medical professional or scientists, and when you have real questions that gnaw at your mind and make your stomach uneasy?

I’m not a scientist, not anywhere close to one. And I’m not a medical professional, although I maintain I would make a hell of a convincing TV doctor. But I am your girl if you need some advice on making medical decisions you don’t feel prepared to make. I’ve been in this position a few times before. We have a new brain surgery we are trialing in the states, will you let us try it on your 5-week old son? Real decision I had to make, worded much more delicately and laced with medical-ese, but that was the gist. See, I’m your girl. I know the stress you feel making an important medical decision when you don’t feel like you should be able to make those decisions.

For me these decisions boil down to a couple of questions I ask myself.

  1. How would I feel if something happened and we didn’t do this?
    In this case that would be how would I feel if my child caught COVID-19 and ended up in the ICU or died. Sorry to be all doom and gloom, but for me this is how it all boils down – hospital time and survival. Would I feel good if we didn’t vaccinate? Would I feel like I did everything I could to protect my child if we did vaccinate? The first question is always anchored in the mommy guilt. I hate mommy guilt. It is a relentless bitch who is all too familiar in my life. And when something awful happens and your mommy guilt convinces you that if you could have prevented it, it’s a long downward spiral into bad food, all the wine, a lot of tears, and some deep rage that makes me want to break things. Mommy guilt is a demon that haunts (is that what demons do or do they torture?) me to my core and I choose to avoid her whenever possible.
  2. How would I feel if something happened because we did this?
    In this case, if my child had an adverse reaction from the vaccine that caused a hospital stay, an allergy, or serious injury or death, how would I feel knowing it was related to something I chose to expose to my child? Knowing how it ended, would I still make that same choice? OK, this question also is heavily centered in mommy guilt, but this one comes with a big side helping of motherly protection. Would I pull my child off train tracks in front of a speeding train even if he might be hit by a car immediately afterward? Which scenario is more likely? Which action makes me feel like I gave up and which makes me feel like I went down swinging?

I’m sure you are thinking that these two questions do nothing to alleviate the stress and point you toward a decision, and as messed up as it seems, it always tells me what I need to know. Although admittedly the revelation is rarely immediate. Thankfully the COVID-19 vaccine is one you have time to contemplate and weigh. At the time of writing this, vaccine trials have only just begun on young children and at least in my area, we haven’t reached the vaccines for all adults stage. But that is coming soon.

For me, this decision was one of the easier ones to make. I’m provaccine. I vaccinate my kids at the recommended timing. We all get the flu vaccine, every single year. I’m happy to jump into the COVID-19 vaccine line. I can’t wait to get my kids vaccinated. But that doesn’t mean that this is a decision that is easy for others. I’ve made decisions about which brain surgery to subject a 5-week-old baby who was barely 2 pounds; vaccine decisions are a walk in the park after that.

In case you are wondering, that 5-week-old was the 6th child in the US to undergo the new brain surgery. It didn’t have the desired outcome, and he is living with long-term consequences of his condition, things we hoped that surgery would mitigate. However, I feel in my bones that it was the right call. I know we did everything we could. I know we gave our son the best chance at a typical life. And if I had to make that decision again, I would 100% make the same choice, every time. That is the certainty those two questions and the resulting internal dialogue left me. I hope it leaves you the same confidence and certainty in your decisions.

The Worst Thanksgiving Ever

Picture it, Thanksgiving 2016. Two NICUs, a burnt brunch, and McDonald’s for dinner. By far the worst Thanksgiving I had personally experienced.

Thursday, Nov. 24, 2016, was our first Thanksgiving as a family of six. Our youngest two children — twins — were 6 weeks old. The day started like many other years, I was in the kitchen preparing food. And we watched the Macy’s Thanksgiving Day Parade on TV.

However, this year there would be no large meal. Our normal large family dinner was pushed  few days back to accommodate schedules and in-laws. My husband, our then 7- and 3-year-olds, and I had traditional side dishes for brunch. It was our small attempt at providing normalcy in an abnormal year. It was a poor attempt at that, it was burned. I burned because I was cooking and pumping, but had not mastered the ability to pump milk unplugged and hands free. It was more like cook, go sit near a plug for 20 to 30 minutes, and repeat. We ate burnt stuffing and grean bean casserole, (were there sweet potatoes?). Honestly, I don’t remember too much of what was on the menu. I remember the stuffing because it is my all-time favorite side, but mostly I remember it was all burnt and there was a general sense of disappointment from everyone. 

We ate a charred brunch with no main course because our twins were in the NICU. Actually at this point they were in two separate NICUs about 30 minutes apart. We wanted to spend as much time together as we could for the holiday. NICU number two had set visiting hours for siblings, it was a 2-hour block of time in the middle of the day. So we built our day around that fixed point.

After eating what we could of the sad brunch, we packed up two children, a lunch box of milk, and drove an hour north to NICU number 1 to see our youngest daughter. We had laminated visitor passes that allowed us to bypass the normal visitor pass process. We walked to the NICU, we scrubbed our hands, disinfected our phones, scrubbed the big kids’ hands, and then we scrubbed our hands again. We walked back to her hallway and her room. I deposited labeled milk in her refrigerator. We talked with doctors and nurses to get updates on how she was doing. We stayed a short while. Kids get very restless in the NICU and on this day, we had a schedule to keep.

We left our daughter and headed 30 minutes west to NICU number two to see our youngest son. We parked in the garage and we walked into the hospital. We paused to note the familiar art that decorates the children’s hospital. We stopped to get our visitor passes and we headed up to the NICU. We waited in the family lounge until sibling visitation began. Once it started, we all scrubbed in and then walked to our son’s hallway and down to his room. We said hello to his neighbors, who turned into wonderful friends. Toward the end of the sibling hours, a grandmother met us in the family lounge and took the big kids to her house for a sleepover.

After the big kids were off, we visited our youngest son a little while longer. Then we made a return visit to our youngest daughter to spend more time with her.

At the end of the day, we drove an hour home, exhausted and hungry. We pulled into a McDonald’s drive thru and got dinner. Until that day, I had never understood why places like McDonald’s stay open on major holidays. I no longer wonder, but I remain grateful  businesses like that stay open.

To date, Thanksgiving 2016 is the worst I’ve ever had. No other bad Thanksgiving has ever been as hard as that year was.

The 2020 holiday season may cause a lot of disappointment and frustration. I share my worst to first inspire you to look back for your worst holiday. Will 2020 be your new worst? Secondly, I share my worst because the title of worst is a little liberating. Maybe liberating isn’t the right term. But having lived through a “worst” experience, you will always have a benchmark for other disappointments. Bathroom floods; at least it wasn’t reliving that really heinous year when [fill in the blank].

Even if 2020 will be your worst Thanksgiving, you know the next time your celebration has a disruption, you’ll be able to remind yourself of your own personal worst and be thankful not to repeat it.

In our worst years, I hope you find at least one reason to be thankful, even if it’s just that McDonald’s drive thru was open so you could eat something that wasn’t burnt. Happy Thanksgiving.

Another COVID Comparison

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.

Why Compare?

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.