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.

Stop Fear Shaming The COVID Cautious

A little bit of fear is good for you.

There is a popular social media post circulating. Its message to you is to stop living in fear and embrace life before this holiday season, because it might be your last one with a dear loved one.

The viral fear-shaming post.

I’m here simply to call bull shit. This is nothing but an attempt to bully people into foregoing safety precautions and celebrate this holiday season like any other year we can remember.

I could go full medical mama and remind you of all the reasons that not just the elderly are at risk. But the down side to that is it requires you to think of others first, and if 2020 has shown me anything, it’s that we as a society aren’t that great at being selfless. I get it. We all are selfish. So allow me to frame coronavirus precautions in a different way. 

A little bit of fear is good for you.

As a mom whose kids are elementary aged and younger, I have seen my fair share of Disney movies. One of our favorites comes to mind every time I hear or see someone declaring we should not live in fear — “Inside Out.” In case you don’t know anything about this movie, this is what you need to know for this point to make sense. In Disney Pixar’s “Inside Out” everyone has five personality traits that guide you as a person. They are Joy, Sadness, Disgust, Anger, and Fear. Guess what we learn in the movie. That Fear’s job is to keep us safe.

You may be about to call bull on me, but answer these questions for me:

  1. Why do you cook your chicken all the way?
  2. Why do you stop at a red traffic light?
  3. Why do you strap your young kids into car seats?
  4. Why do you get vaccines?
  5. Why do you pay for items you get from stores?

You do it because you are afraid of the consequences than could come with not doing them. There are things we do every day that are guided by fear. I’m not talking paralyzing phobia-level fear. I mean that we use fear regularly to adjust our behavior.

If you are a parent, I am willing to bet you followed at least one safe sleep recommendation because you were afraid of SIDS. I know I was super diligent about safe sleep with my first baby because SIDS was scary and I didn’t want my child to die because of something I did or didn’t do. Similarly, I won’t leave my babies unattended in the tub because I am afraid they will drown. My kids are required to wear helmets when they ride their bikes, scooters, and roller skates, because I am afraid of head trauma from their falls.

Other things I do out of fear:

  • I drive sober because I don’t want to wrap my car around a tree.
  • I won’t use an Instapot because I am afraid of pressure cooker explosions. I do recognize this one probably is unfounded. I’m sure pressure cookers now are much safer than the ones from when I was a child. But I also grew up afraid to sit near a window during a thunder storm.
  • I won’t use the dryer if I’m leaving the house because I’m afraid of lint fires.
  • I lock my windows and doors anytime we all leave because I’m afraid of being robbed (which is funny because I don’t actually have anything nice enough to steal. Almost everything we own is old enough to consider replacement, or it’s been destroyed by the kids).
  • I won’t eat leftovers after a week because I’m afraid if food poisoning.
  • I won’t jump off my roof because I’m afraid of breaking bones.

That list could be hundreds of items long because there are a lot of things I do out of fear. Do some of the items seem ridiculous to you? Are there items on the list you also do? I’m betting you can answer yes to both.

My point is we all live in fear. Fear is healthy. It helps us identify safety risks and then we make decisions on how likely the fear is of coming true and how severe the consequence is. I don’t let my kids play unsupervised when we have a camp fire because I’m afraid they will be burned and that isn’t something I want to live with. I use caution when I’m using a sharp knife because I’m slightly afraid of cutting myself, which happens often. See what I mean? Big scary thing, lots of caution; not so scary thing, little bit of caution.

I fully know that I can follow all the recommendations and precautions, and still experience the things I fear. For example, when pregnant, I wouldn’t get pedicure before 38 weeks because I was afraid of preterm labor. Without a pedicure, I still delivered twins before 25 weeks. Clearly not a perfect system, but one that lets me feel like I did everything I could.

As we enter the 2020 holiday season, don’t be bullied or fear-shamed into relaxing your coronavirus safety measures. Go ahead, let your fear of spreading a disease that has caused the deaths of more than 1.3 million people globally, guide your decision to gather or not. Making decisions based on fear isn’t silly, it’s what keeps us safe.

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.

Childhood Cancer Is…

September is Childhood Cancer Awareness month. Before the month comes to an end, I want to paint a picture of the realities of childhood cancer. Too often kids with cancer are shown as cute kids with bald heads. That is only a small fraction of what childhood cancer is.

Childhood cancer, at least in my experience, is:

  • Putting your entire life on standby, because cancer treatment is the top priority.
  • Watching your already small child lose muscle mass, and becoming rail thin.
  • Having to dig out old clothes you thought had been outgrown because your child is now smaller.
  • Seeing all of your child’s hair fall out in clumps. All of it. No more eyelashes. No more eye brows. And a mostly bald head that has a few stringy patches of hair that managed to hold tight.
  • Cleaning vomit out of clothes, sheets, carseats, strollers, shoes, and furniture.
  • Learning the sound of the pre-vomit retch so well you can catch the first vomit if you can get a container fast enough.
  • Carrying a vomit bag with you everywhere you go. Not as a safety measure in case your child feels queazy, but for the inevitable public vomiting display. And then telling onlookers it’s not a GI bug, your child isn’t contagious, it’s just chemo puke.
  • Feeding your child through a tube that enters their nose and stops at the stomach because they no longer have interest in eating.
  • Watching your child mostly nap. Playing requires more energy than they have most of the time, so napping and snuggling becomes their favorite past time.
  • Keeping a hospital bag packed at all times because you never know when you will need to be readmitted.
  • Wondering how adults manage to work while going through chemo or hide their cancer, because your child can barely stay out of the hospital while in chemo. And then remembering the chemo course given to children is more aggressive than the treatment given to adults.
  • Watching you child be brave and endure more needles and tubes than any child should have to experience, ever.
  • Spending more time in the hospital than home and losing large gaps of your own life.
  • Knowing the oncology unit is just one step down from the ICU. And an adverse event — like a tumor bleed that requires emergency surgery, or sudden difficulty breathing — might be just around the corner.
  • Having to dig out old clothes you thought had been outgrown because your child is now smaller.
  • Seeing all of your child’s hair fall out in clumps. All of it. No more eyelashes. Mo more eye brows. And mostly bald head that has a few stringy patches of hair that managed to hold tight.
  • Cleaning vomit out of clothes, sheets, carseats, strollers, shoes, and furniture.
  • Learning the sound of the pre-vomit retch so well you can catch the fort vomit if you can get a container fast enough.
  • Carrying a vomit bag with you everywhere you go. No as a safety measure, but for the inevitable public vomit. And then telling onlookers it’s not a GI bug, it’s chemo puke.
  • Feeding your child through a tube that enters their nose and stops at the stomach because they no longer have interest in eating.
  • Watching your child mostly nap. Playing requires more energy than they have most of the time, so napping md snuggling you becomes their favorite past time.
  • Watching your previously energetic, athletic child stop walking. Independent mobility hurts and just isn’t worth it.
  • Keeping a hospital bag packed at all times because you never know when you will need to be readmitted.
  • Wondering how adults manage to work while going through chemo or hide their cancer, because your child can barely stay out of the hospital while in chemo. And then remembering the chemo course given to children is more aggressive than the treatment given to adults.
  • Spending more time in the hospital than home.
  • Knowing the oncology world is just once step down from the ICU. And an adverse event — like a tumor bleed that requires emergency surgery — might be just around the corner.
  • Turning your home into a hospital-like environment with feeding pumps, IV antibiotics, IV nutrition, and IV fluids.
  • Agreeing to treatment knowing some of the side effects could kill or permanently alter your child, but the cancer left untreated definitely will kill your child. Side effects like:
    • Heart damage
    • Secondary cancer
    • Hearing loss.
  • Learning your child’s chemo recovery pattern better than their treatment team. Knowing ANC levels, monocytes, platelet counts, etc.
  • Having a wave of panic anytime there is a disaster (or pandemic) because that puts a strain on blood bank donations and your child needs transfusions regularly.
  • Being thankful for the good days while knowing it is only temporary.
  • Knowing how real scanxiety is.
  • Knowing the end of treatment isn’t the actual end of all fears.

Hydro What?

September is hydrocephalus awareness month. Hydrocephalus is a mouthful, I know. It’s a medical term that means water on the brain. Sounds iffy at best, like a flood in your basement. A flood really isn’t a bad analogy. Like a flood, hydrocephalus can be devastating for some, manageable for others, and even self resolving for a few.

Having hydrocephalus means there are a lot of times in your life where you just wait. Wait to see if it will resolve on its own. Wait to see if you need surgery. Wait to see how severe the damage is. Wait to see how your motor function is affected. Wait and see…

Having a child with hydrocephalus, at least for me, comes with a lot of guilt. It’s not exactly news you are excited to receive and because there is a lot of waiting, there is a lot of time to explore what this could mean for your child. Time to pray and try to bargain with God to let your child be one who self resolves, and leads a typical life. Time to contemplate selling your soul to ensure your child has a typical life. After all that is parenting in a nutshell—sacrificing yourself to give your child(ren) everything you can.

Preemies have frequent head ultrasounds to look for brain bleeds. This is how I learned my youngest son had a severve bleed.

Hydrocephalus can happen at any time. Sometimes it is diagnosed before a child is born. Sometimes it happens from an event shortly after birth. For babies born prematurely, brain bleeds are a common cause of hydrocephalus. Sometimes it happens after a traumatic injury. My youngest son was born extremely premature. When he was 3 days old, I was told he had a severe bleed on both sides of his brain. I was told he may have hydrocephalus, but we would have to wait and see. I was told he could die. I was told a long list of things he might never do.

  1. He might never learn to breathe on his own.
  2. He might never learn to walk.
  3. He might never learn to talk.
  4. He might need round-the-clock medical care for the rest of his life, however long that might be.

But again we would have to wait and see. Medicine often is preparing for the worst and hoping for the best. In preparing for the worst, there is panic and a lot of discussions about end-of-life care, in case that is the direction this takes. Making decisions about when and if to resuscitate a child is not what any mother wants to do, ever, but especially not in the first few days of your child’s life.

Hydrocephalus was a dark cloud on my youngest son’s first month of life. That first month was full of watching and waiting. His head would be measured every day to assess if he would need intervention. At one point, his head size was monitored so closely, there was only one doctor who was measuring his head to ensure it was measured in the same way at the same spot every time.

I’m going to back up for a minute. Hydrocephalus is basically a condition where cerebral spinal fluid accumulates around your brain instead of being absorbed by your brain. See, I told you flooding was a good analogy.  Do you know what the cure for hydrocephalus is? Yeah, neither does anyone else. Do you know what the treatment for it is? Brain surgery. Not kidding. The only effective way to manage hydrocephalus is to open up your head, stick a tube into the most affected area of your brain to drain the excess fluid out and redirect it into your abdominal cavity to be reabsorbed into your body. It is exactly as worrisome as it sounds. Or at least the first surgery is. It’s actual brain surgery.

At 1 month old, my youngest son’s head growth was severe enough that he needed to see a neurosurgeon. At just 5 weeks old, he had his first surgery to place his first shunt. You may notice I use the word ‘first’ to describe his surgery and shunt. It’s not because I’m pessimistic and expect he will need another surgery or shunt at some point in his life. I use the word ‘first’ because at almost 4 years old, he is on his second shunt and has undergone four shunt-related surgeries. I use ‘first’ because I’m a realist and fully anticipate he will at some point in the future need another shunt repair or replacement. When it comes to hydrocephalus, brain surgery just comes with the territory; more frequently for some than others.

After his shunt placement. This first shunt only lasted five months.

At 6 weeks old, we learned that my son could breathe on his own, or at least without the help of a ventilator. At 13 months old, after missing most milestones, we learned he has cerebral palsy. Before he was 2 years old, he learned to eat food. A little after 2 he learned to drink from a cup. By 3.5 he had learned how to make some word sounds. At almost 4 we still are waiting to see if he will ever sit on his own, if he will ever learn to feed himself, if he will ever learn to walk.

My youngest son has hydrocephalus. As his mother, I feel an overwhelming sense of guilt. I feel guilty for praying he wouldn’t have hydrocephalus. I feel guilty for wishing and praying he didn’t have the life he end up having. I feel guilty there was nothing I could do to protect him. I feel guilty for not doing more for him. I feel guilty every time he ends up needing another surgery for his shunt surgery. I feel guilty every shunt failures that I think might just be a stomach bug. I feel guilty for wishing his life was easier. I feel guilty for thinking hydrocephalus would interfere with his ability to play and bond with his siblings. I mostly feel guilty because he is so happy.

My son wakes up every day ready to take on the world. He wakes up with a smile and a lot to say with words I hope to one day understand. He spends his days enjoying life as it is. He was born with a very laid back attitude. He has really taken the phrase work smarter not harder to heart. I have seen the boy try to make something happen for himself only to learn a day or two later that if he waits long enough, his twin sister will do something similar for him. Boyfriend learned not to be so picky about which toys he has, because having his sister hand him toys is a lot better than trying to figure out how to get toys himself. If you ask me, I think he’s a bit lazy. But if you could ask him, he’s living his best life.

Things Cancer Stole

September is national childhood cancer awareness month. It also happens to be the month my youngest daughter (third child) was diagnosed with cancer. She is my second cancer kid. Yeah that’s right, two of my kids (out of four) have been diagnosed with pediatric cancer.

I’m willing to bet every cancer mom knows the date she was told her child has cancer. I’m also willing to bet she felt like time stood still in that moment and she questioned what was happening. At least that is how it was for me. Cancer made my world stop. Not just stop, but halt and stop suddenly and hard. Pediatric cancer isn’t like adult cancer. There are no instructions to go to this test, go to that test, and we’ll get back to you with your results next week. Pediatric cancer is addressed with more urgency. Once a doctor thinks your kid has cancer or a tumor, you are sent immediately to meet oncology and your kid is admitted to the hospital that day. See, screeching halt.

Cancer, like many of my children’s diagnoses, stole things from my life with it’s arrival.

Ignorant Bliss

The first thing cancer stole was my ignorant bliss. It took that false sense of security that parents have thinking they are raising a healthy, appropriately developing child. Cancer just ripped the rug right out from under me to expose a cracked, unstable foundation. One day you think you’re doing OK, your child is a happy kid. Your kid appears to be healthy and then BAM—you learn cancer has been growing inside your child. And what happens after that cancer is exposed is even worse. You start to connect all the dots, all the cancer signs your child had that you brushed off as a symptom of something else. That fever a few months ago that you chalked up to a viral bug that must be going around. The changes in appetite that you thought was just a phase. Things you had brought up to your pediatrician, who also reassured you it was fairly common for a kid that age.

Don’t take that last part as a bash on pediatricians. Kids do funny things. Kids pick up germs everywhere. And most importantly the warning signs of pediatric cancer are all symptoms of other common childhood ailments. Your kid’s pediatrician is trained, and has the experience to tell him/her that whatever your warning signs, they were most likely related to something far more common than cancer. It’s the whole, if you hear hoof beats, think horses, not zebras.

Regardless, cancer stole the sense that all was right and normal in my world. After cancer, I was left with a motherhood filled with fears and doubts. Those fears and doubts, like grief, were strongest after diagnosis, but rear their ugly heads from time to time, and I’m never sure what or when those feelings will be triggered.

More Security

The first time it stole my ignorant bliss, but the second time it stole what little safety I thought I had regained. The second time one of my kids was sent to oncology wasn’t like the first. My world didn’t stop as suddenly as it did the first time. I had eight years between diagnoses and a few other pediatric medical issues on my plate. That second diagnosis came as less of a surprise. Not that I put together all the warning signs. I still had that 20/20 vision after having a confirmed diagnosis, but I was better at reading doctors’ reactions and had the luxury of time to do some research to figure out what could be happening to the youngest daughter. I won’t lie, when I found cancer as a potential cause, I immediately dismissed it because we’d already done that once. About a day later, after a lot of conversations with myself and my husband about why it couldn’t be cancer, I accepted that cancer was a good potential fit for the situation. I decided it was likely cancer just before the official referral to oncology was made.

But even without the sudden shock, cancer still took away a sense of security that I thought I had regained. I was at a point in my life where I felt like I finally knew what I was doing as a mom. I was at the point where I knew there wouldn’t be any more children, and it felt like everything was getting easier, simpler. And then cancer came back to remind me I can never forget it. I’m never safe. It always is lurking in the background, following my family to make sure I don’t forget about it. OK, it’s not really that personal or malicious, but it felt personal the second time.

The second time it took the safety and security that goes with surviving. As a family, we had been there. We were already part of that terrible club. We looked cancer in the eyes, declared not today, not my child. We came out victorious, our daughter was a survivor. I eventually had the sigh of relief that cancer was behind us. Cancer was a crazy footnote in an otherwise normal life. Or at least that is what it was until it wasn’t.

Give A Damn

I don’t remember how long ago it was, but there was a country song, “My Give A Damn’s Busted.” After cancer—after two cancers—I officially just don’t care about a lot of things. Things I once cared about, barely register. Things I should care about, I just don’t have the energy. I’m like a free-spirited hippie, floating through life, not caring about things.

Kids clothes don’t match, don’t care. Haven’t washed my hair in a week, don’t care. Left my house looking like I live in a tent, don’t care.

It’s not an all the time thing. And it’s not a depression thing. It’s more there are so many things that I now have to care about: fevers, signs of infection, medication schedules, water intake, food log, weight gain, that when I have an option not to care about something, I take it. As an added bonus, I’m comfortable with who I am, and I don’t really care what people think about me. Life is too short and too many things are too trivial for me to allot my attention its way. So if you see me at the grocery store with a stained shirt, a hole in my pants, and a messy bun that you aren’t sure isn’t one massive dreadlock, you can wonder how I let myself get here, or you can see me for what I am—a mom with a broken give a damn.

Patience with Others

Cancer took away a huge chunk of my patience for others. After the second cancer, my ability to take a step back from a situation and pause before responding took a BIG hit. You may have noticed from prior posts that this ability was one that has never been easy for me. But with practice, I was able to pause, and see a situation differently. Most notably, I would be able to justify others’ ill feelings toward things that never would have registered as a problem in my book. Like setting a broken arm with pins. I’m sure for some, that would be a big deal. For me, I don’t think I thought twice about it. I signed the consents, asked if my kid was required to stay overnight, or if I could just take her home afterward. Pinning a bone back in place seemed so routine, so low risk, that it never occurred to me to be upset about it. After I let a surgeon remove one of my kid’s organs, an essential organ at that, temporary metal spikes just seemed like a minor detail.

Now I don’t know if it’s entirely cancer’s fault that my patience has become extremely thin. I know COVID-19 plays into this too. Maybe it’s the combination of the two. But when it comes to people expressing their mourning of a life once lived, their own sense of normal—something I know in my mind is completely needed—I just can’t see it through my blind rage. I’m easily set off when it seems people can’t just hitch up their big girl pants, wade through the shit, and put their lives on hold until they are told otherwise. Because that is how I approached cancer (and all the other pediatric health issues thrown my way). I heard the news. I took a minute. I took a breath. I didn’t cry. I put on my big girl pants and asked what do we do now. I willingly, without hesitation, put my entire life on hold until the situation was over. I did it every time. I would, and likely will, do it again. I don’t know that it’s healthy, but that is what I do. I take everything head on, and figure out how to wade through the shit storm that is happening in my life, the one that came on without any warning.

So was it cancer that stole my patience? Or was it more like cancer (or maybe COVID) gave me rage? Maybe I was always this way, and cancer just amplified my normal traits. Whatever the reason, I’m not who I was before cancer and I don’t know if I’ll ever be that person again. Thanks, cancer.

Happy Mothers Day, Warrior Mama!

Oh, mama! I know your life is not what you thought it would be. I know this is not how you saw yourself as a mother — running to medical appointments instead of soccer practices. But your unimaginable life has made you a mother beyond compare. No one advocates for their child the way you do. You took on the world without time to think or prepare. You stepped in. You rose up. You madam, are amazing. Even if you don’t feel amazing.

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Happy Mothers Day!

Happy Mothers Day to the mother who has seen her baby in a plastic box. The mother who had to ask a nurse when she could hold or touch her baby for the first time. The mother who knows what a baby needs to do to move out of an incubator and into an open crib.

Happy Mothers Day to the mother who has seen her child intubated and knows the sounds a ventilator makes. Do-do-do-doo-doot. The mother who knows the difference between a ventilator, CPAP, high flow, nasal cannulas, and room air.

Happy Mothers Day to the mother who has spent countless nights (and maybe a few holidays) in her child’s hospital room. The mother whose child has been in an ICU (NICU or PICU). The mother who has spent so many nights in a hospital room with her child that she has a preferred style of parent sleep couch.

Happy Mothers Day to the mother who has spent hours in an emergency department with her child. Injuries. Seizures. Illnesses. Episodes of respiratory distress. Gateways to admission. Really too many reasons to list.

Happy Mothers Day to the mother whose child has a lifelong chronic condition. The mother who knows another admission may just be a matter of time. The mother who always waits for the other shoe to drop.

Happy Mothers Day to the mother who has sent her child into surgery. The mother whose been in a surgery waiting room more times than she cares to count.

Happy Mothers Day to the mother who takes her child to countless therapy appointments. The mother who has been told what her child will never do. The mother who hopes her child will defy the odds. The mother who helps her child find as much independence as possible.

Happy Mothers Day to the mother who prepares for IEP meetings like she is going into battle. The mother who fights to give her child every chance.

Happy Mothers Day to the mother who knows more about her child than she ever thought she would need to know. The mother who knows how her child reacts to medications. The mother who knows her child’s recovery patterns. The mother who knows what type of cough precedes vomiting.

Happy Mothers Day to the mother who has ever felt like a home care nurse. The mother who gives multiple daily medicines. The mother who feeds her child through a tube. The mother who has oxygen tanks and/or oxygen concentrator in her home. The mother who watches her child’s monitor for apneas and bradys. The mother who can hook up IV fluids, IV antibiotics, and/or IV nutrition in her home.

Happy Mothers Day to the mother who didn’t think she could all do this. To the mother who thought she wasn’t capable of managing her child’s health. To the mother who was and is scared. To the mother who feels overwhelmed, but continues to push forward. To the mother who gives everything she has to her child(ren) so they can have a more typical childhood. To the mother who still blames herself. To the mother who wonders why. To the mother who feels like she isn’t doing enough. To the mother who feels lost to her child’s medical diagnoses.

Happy Mothers Day, warriors! I hope you feel seen, appreciated, and loved. I hope you are celebrated. I hope you take a moment to realize how amazing you are.

What I Want You to Know, But I’m Not Saying – Corona Edition

This topic has been in my mind for weeks. I couldn’t quite figure out how to post it without being a bitch and to be honest, I’m not actually sure I achieved that. For a while, I tried to calm down. But the rage kept building. I considered just turning this into a rant, but I never did. Maybe angry internet isn’t my thing? I also considered letting it all go and working through this as my own issue. However, I couldn’t ignore it. Not only did my mind continue to wander back here, but feeling was being expressed around me in groups from other moms like me. If nothing else, I created this blog to help me, and others like me, to feel normal about our situations. So you see, I couldn’t ignore this one. 

For everyone going stir crazy and grieving the loss of normal life, this is what I want you to know.

It’s OK to be Upset

It is perfectly reasonable to not only miss your normal life, but to actually mourn it. It’s a loss to your sense of self and your sense of your place in the world. It may seem overwhelming. You likely will have more anxiety than you have before. You may start to be irritable because you have lost all control of your life. For me this manifests as becoming irrationally mad at little things I should be able to control – like whether my tablespoons and teaspoons are in separate slots in the silverware drawer.

This is normal. I know because it’s what happened when my twins were born far too early. It’s what happened when I was told my youngest son might never walk, talk, or do anything independently. It’s what happened both times I was told one of my daughters had cancer.

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Everything I knew about my life and my family had been ripped out from under me. My world was rocked and I was vulnerable in a way I had never felt before. Basically a part of my reality had died suddenly, without warning. And when something ends, you grieve.

It’s All Relative

This is the point where I struggle the most. I have a hard time putting myself in other people’s shoes. I can do it, but it usually is after my knee-jerk reaction to roll my eyes. Sorry.

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I keep reminding myself that worst is relative. Most people have not had their lives upended and to them, social distancing might be the worst thing in the world. I’m pretty low maintenance (bordering on hot mess express) so even in the best of times, I can’t imagine being upset about forgoing manicures, pedicures and hair salons. Seriously my roots are now chin length because that is how long it’s been since I’ve visited a hair care professional. Thankfully when I do go, my stylist knows it will be six months to two years before she sees me again, so she sticks pretty close to my natural color and a shape that doesn’t require daily styling because we both know that’s not going to happen. #topknotforlife
I do miss Target and friends. I miss seeing people in the flesh. I miss hugs.
I’m trying to remember that your life and my life are not the same and this is hard for you. I’m sorry I’m not more supportive and understanding. I’m sorry I keep saying “suck it up buttercup” when you are telling me you are having a hard time. I know this makes me a bad friend, daughter, niece, etc.

There Is A Benefit to All This

This last point is the biggest because to me, this is the thing I want to stress the most.

Yes, of course there is the benefit of safeguarding your health and the health of your family. And there is the benefit of flattening the curve so our health system can actually meet the need of the infected. But there is another benefit that you didn’t even know about. Ready?

EVERYONE IS IN THE SAME BOAT

Might not seem like much, but those things you are missing are the things everyone is missing. That concert you bought tickets for months ago. That has been rescheduled. Everyone who has tickets is missing it. The performer is missing it. So you won’t actually miss out on it. It’s not like you missed a big event that still happened and you only were able to see it from other people’s social media posts.

That trip you couldn’t take. No one else is taking that trip. Your cruise won’t sail on without you. Mickey and Minnie won’t be hugging other people’s children instead of your’s. Everything everywhere is shut down.

Birthdays and holidays, this is the year no one can celebrate together. It’s not like you will have to video call you into your daughter’s birthday so you can see her open gifts surrounded by grandparents, aunts, uncles, and cousins. Those parties aren’t even an option. So you see, you aren’t really missing out.

This year will just go down as the year no one could do anything. Everyone will have these memories, just like my great-grandparents had the Great Depression, my grandparents had war rations, and my parents had gas rations (although this may have just been a thing where they lived).

It might not seem like a benefit, but from where I sit, it’s a huge benefit.

When your child lands in the hospital for a long time, you also will miss things previously planned. You’ll miss birthdays and holidays. You’ll have to cancel trips. Except the world continues to function without you.

Living in quarantine you don’t have explain to your children why they can’t play sports this year while all their friends can because you don’t have the energy to figure out how to get them to practices and games while you stay with a hospitalized child and your spouse continues to work because you don’t want to do anything that jeopardizes you family’s health insurance. You have the added advantage of no one playing anything this season.

You only have to deal with the stress of quarantining in your home. While all the streaming services drop new programming as quickly as they can to help keep you entertained. You don’t have to deal with the stress of being removed from the world, while also dealing with the stress that goes along with confronting your own child’s mortality. You aren’t spending your isolation next to a child you were told might not survive the night.

Basically, quarantine didn’t remove you from the world. You still can identify with what others are experiencing. The challenges of distance learning. The challenges of finding toilet paper and disinfectant at the store. Quarantine changed the world, not you.

Be Extra Considerate When Interacting with a Medical Mom

I know quarantine is hard, even if I am having a hard time understanding why. I’m trying to understand your plight with more compassion. However, before you tell me how hard it is to stay in your home and watch Netflix; remember this:

  • I have missed entire chunks of my life because of my children’s ailments.
  • I missed my sprinkle for my twins because they were born a few days prior and then the day before the scheduled event I was told one may not make it through the night, and if he started to decline did we just want to keep him comfortable, or did we want heroic measures.
  • I have lived in a hospital room for months at a time with a preschooler who wants me attached to her hip while she watches cartoons 24 hours a day because chemotherapy makes her feel like crap.
  • I had to video call my family to watch my 10-year-old blow out her candles and open gifts. In fact, in our family of six, the last four birthdays have been celebrated while in the hospital.
  • I missed school concerts because I was in the hospital with one child, while someone else was performing on stage.

Remember that I have missed a lot while the world continued to function. I’ve felt like an outsider looking in for a long time. I can’t even fully appreciate all the quarantine experiences because I have been in a hospital room for the entire quarantine period. And I just can’t understand why you think staying in your home is so hard.

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I’m not alone with these thoughts. I’ve heard them echoed in closed groups from moms, who like me, have spent a lot of time in hospitals with their children and no longer feel like they are apart of the world. Try to recognize it could be worse.

Healthcare and grocery workers, I can’t begin to imagine the stress you are under balancing duty, your ability to provide for your families, and the risk you assume every shift you work. I’m totally OK if you want me to quit my whining. I know my plight isn’t confronting this thing head on, all day every day, and watching people die. Thank you for all you do. 

I’m Done Being Nice

As we live through the covid-19 outbreak, there are a few things gnawing at me. Most of these things stem from the same place – people who don’t understand social distancing.

Here’s the thing. You have two; count them one, two; jobs to do. First you need to wash your hands. Second you need to stay home. These tasks are not hard. They don’t require a lot of effort. But they are beyond important, and some of you don’t get it.

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This mask is one I wore during my youngest daughter’s port access (a sterile procedure). You don’t need a mask. I do not routinely wear masks. They are in short supply in hospitals, where health professionals need them.

I am not a scientist. I’m not a medical provider, although I do maintain that I would be a very convincing TV doctor. If you know me well, you probably know I was an English (communication arts) major in college. In fact, I was terrible at both math and science. If I can wrap my mind around this, so can you.

I, like many others, have a few members of my family who fall into the high risk category should they be exposed to covid-19. My parents and mother-in-law all fall into the risk category by age and pre-existing conditions that include diabetes and autoimmune disease. I don’t know how they would fair if infected, and I don’t really want to find out. Two of my children have medical histories that include lung disease and other pre-existing conditions. I don’t want to find out what covid-19 would do to a 3-year-old who still sleeps with oxygen and has shunted hydrocephalus. I really don’t want to know what it would do to 3-year-old who is in an active treatment for cancer and very recently underwent an organ transplant. Additionally, I don’t want to know what it’s like not to be able to get a hospital bed when they need it because the hospitals are filled to capacity with covid-19 cases.

Our country is calling us to slow the spread of this virus to both protect people in the high risk category, and to ease the burden on the health care system. It’s an important and right thing to do, even if you think everyone is overreacting. Spoiler alert: we aren’t.

Wash Your Hands

It sounds so simple, but just wash your hands. Wash them regularly with soap and water for at least 20 seconds. Wash them after you have been to a public place. Wash them before and after you touch your face. Wash them after you use the toilet. Wash them before you eat. Just wash your hands. In some instances, you can use hand sanitizer.

You do not need gloves. There already is a shortage of personal protective equipment for health care workers. Please don’t think you need gloves, or masks, to go out into the world. If we start rushing to buy gloves, it only hurts health workers. Just be smart and wash your hands.

While you are at it, don’t forget to disinfect surfaces. Especially your phone. Washing your hands won’t matter if you constantly have your phone in your hands and you never wipe it down. You will only recontaminate yourself.

Just wash your hands.

Stay Home

Stay home as much as you possibly can. Staying home reduces the number of people you interact with and reduces the number of potential contagion sources (a.k.a., people who could spread covid-19 to you).

If you have the option to work from home, do it. If you don’t that is OK. It likely means your job is essential in our society. So if you are part of the glue that hold our society together, thank you! When you go to work, be smart. Disinfect surfaces regularly. Wash your hands regularly. And try not to touch anyone unnecessarily.

If you are going out, ask yourself if it is essential. If you’re not sure, allow me to help.

  • Groceries – ESSENTIAL
    • Send only one person from your home, if possible. This is not a normal time in our lives, don’t take your children out with you (certainly if you don’t have childcare, it’s a different story).
    • Many stores have grocery pick up. Utilize this option whenever possible.
  • Prescription medication – ESSENTIAL
  • Medical appointments – DEPENDS
    • Call your provider first.
    • Routine appointments are being rescheduled.
    • Have your provider triage you over the phone, or maybe utilize telemedicine.
  • Hospitals – DEPENDS
    • Are you dying? If yes, please go.
    • Did your doctor, physician assistant, or nurse practitioner tell you to go? If yes, then go.
    • Are you in labor? If yes, call your OBGYN or midwife and follow her/his instructions.
    • Are you going for something that can be done elsewhere? If you are going for a pregnancy test, a headache, anything that can wait, you need to know you might not even be seen in the ER for days, because the sickest people will come first, and this is a pandemic.
      *People with underlying health conditions know how to contact their care team first and let their providers figure out whether they need to go to a hospital.
  • Carryout food – NICE TO HAVE – it’s not essential, but can be done occasionally.
    • This doesn’t mean you should sit at the bar while it’s prepared.
    • This is not an invitation to plan running into friends.
    • This is the best time to order online, pay online, and pick up in the store, or have it delivered.
  • Parks – NICE TO HAVE
    • If it’s empty, I guess, but wash your hands when you are done.
    • If there are some people, stay at least 6 feet away.
    • If it’s crowded (do you see more than 10 people where you are?), turn around and go home.
    • Don’t you dare plan a picnic with your extended family.
  • Nail salons, hair salons, tattoo parlors – LUXURY ITEMS
    • Your actions are increasing your risk and the risk for those in the salons. Really those places should be closed in the first place.
  • Target, Dollar General, and other retailors – DEPENDS
    • Are you buying an essential? Cleaning products? Toilet paper? Food? If yes, you are fine and should go. Just keep your distance from others and wash your hands.
    • Are you buying gifts or activities? Are you there to witness the pandemonium? Are there because it’s part of your daily routine and you are tired of being alone at home? If yes, STOP IT! Stop looking for ways to expose yourself and others. I don’t care if you feel fine. Go home, wash your hands, and stay there. You get lonely, pick up a phone.

Know What You Are Sharing

If you are sharing “helpful tips” on how to live through social distancing, I hope you have real life experience before 2020.

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I’m not sure the Maryland Department of Health has ever been cut off from the world before. If it had, it would know that screen time and social media are one of the few things that might make you still feel connected to others. Or at least distract you from your current situation. I on the other hand (shameless self promotion) have been social distancing long before it had a name. I do have tips for you. I do know what I’m talking about, I have lived through it more than once, and prior to 2020.

Now if you find certain sources in your social media feed to trigger strong emotional responses, unfollow them. But don’t throw the towel in on the whole thing. Now may be the time to find new sources on your feed. Follow new people or a new hashtags on Twitter and Instagram. Join a new group on Facebook. Figure out Snapchat and TikTok. Video conference friends and family. Stay connected, or surviving the coming days, weeks, maybe even months is going to be very hard.

Don’t Minimize The Importance of Social Distancing

First, I am not talking about covid-19 memes, song parodies, and the things that keep us laughing through this time. Laughter is what will keep many of us sane during all of this.

I’m talking about the stories that refer to those of us who are social distancing as sissies.

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Following the guidelines of social distancing, doesn’t mean that someone is weak. I don’t want to see or hear how older generations lived through polio and measles and didn’t quarantine. Yes we have lived through a lot of viruses and diseases, many much more dangerous than covid-19. However, this one spreads quickly. People carrying the disease can spread it before they know they are contagious. If you want to compare covid-19 to anything an older generation may have seen, it’s the 1918 Spanish flu. And even with that, you would have to be at least 102 to have lived through it, and at least 104 or 105 to remember anything about it.

Similarly, don’t rationalize your blatant disregard of social distancing by figuring out how many people you encounter doing the things you have to do (work, getting groceries). You still are increasing the TOTAL number of people you contact. If you work with 20 people providing an essential service, and later go out but only see six people, you still came in contact with 26 people who could have infected you, or whom you could have infected.

Stop dismissing the actions of social distancing. It’s not the same as going off to war, but your choices can and will affect how many people die as a result of this outbreak.

WASH YOUR HANDS. STAY AT HOME. THAT’S ALL YOU HAVE TO DO.