You Are Not Alone

 Many may skip this post, and honestly I hope you do. We're all so tired of hearing about, reading about covid. And if you skip reading the rest of this post, I hope that it means you haven't experienced this beast firsthand. I've said it before, and I'll say it again, I don't wish the pain of this virus on anyone. However, many of us haven't been so lucky. I've realized that what has made me feel the least alone in all of this is my unfortunate connection to people I've never met, who also happen to understand the complexity of symptoms I've experienced. So this isn't going to be scientific research.  It isn't going to be published in any journals. And it probably isn't even going to make sense to those who are in healthcare, because COVID DOESN'T MAKE SENSE. But, what I'm hoping it can do is make one more person feel less alone. 

Let's talk symptoms....

So when you first become infected with Covid-19, you'll likely have no idea. For the first couple of days you'll feel nothing. But then you'll start to feel tired, like you just can't get enough rest. But who isn't tired, right?? Who isn't over life right now between the pandemic, family life that isn't normal, politics, etc, right? We all have reasons to be tired. Then occasionally you may notice a tickle in your throat. It doesn't hurt and it only happens maybe 3 times a day at random times. Who notices that? Someone must be burning leaves, harvesting crops, something to cause a little throat irritation. It's so minor and so sporadic, you'll all but ignore it. At that point you'll notice the beginnings of a headache. Unfortunately, this bastard will likely move in and set up camp for the duration. Now it isn't going to be like normal illnesses where you feel the symptom, take some pain medicine and get relief. It won't get worse, then better, and be done. This jerk isn't effectively treated with pain medications, and it does occasionally go away, but it comes back with a vengeance. There are some who have found minimal relief with prescription migraine medication and occasionally ice packs to the back of their head, but other than that, not so much. 

As I continue through other symptoms, I want to preface this by saying I'm not discussing them in this way in order to perpetuate negativity, or to discourage others. Believe me, I needed the moments of positivity, the goals I set for myself each day, and the belief that I'd get better. However, I also needed to not feel crazy. I needed my symptoms, experiences and feelings to be validated. So, it is that concept that compels me to continue. 

After the headache, or maybe along with it, will come the low grade fever and body aches. You'll have chills like your fever is extremely high, but it may only hit 99-100. This happened about day 5 or 6 for me.  You'll have body aches with this, that at times feel like if someone even touches your skin you'll cry...even your eyelashes hurt. Then you'll wake up the next day and feel like maybe you were making it up the night before because now you feel fine and surely that can't happen. Viruses don't work like that. Well, wait for 4pm...it will remind you that you very much did NOT make it up. 

Now let's discuss taste and smell. Not everyone gets this symptom, but if you do get it, you don't even need the test to confirm it. You're covid positive.  This one is so completely covid that it's the no brainer symptom. I say this because so many of the other ones can be mistaken for any other virus/illness. I noticed my complete loss of taste on day 10. It was odd, and honestly it was an emotional symptom for me because I already felt awful, and now I couldn't even taste my food. I do remember eating a lot of raw broccoli with no dip because why not??? Can't taste it anyway! May as well take advantage, right?? :) So for me, I could eventually taste very extreme sweet, salty, or spicy, but they didn't taste extreme to me. It was like everything was muted. It did come back eventually but it was slowly and sporadic. I have my taste and smell now for the most part, on day 57, but I also now have a very strange smell in my nose sometimes that I can't get away from, and it is accompanied by a fun burning sensation. Some have reported having these sensations for 7-8 months after infection. There are groups that specifically discuss ways to help with this and it involves retraining your brain and nose to smell again. 

The muscle aches and body aches are another off and on symptom. Many of us have experienced cramping in our legs, specifically in our calves. I tried to stay as hydrated as possible to counteract this, as I assumed it was mostly related to electrolyte imbalance. 

The breathing and shortness of breath aspect of covid is certainly the scariest for most people. For me it was infuriating. It felt like someone had wrapped saran wrap around my lungs and just kept wrapping tighter. It wasn't like I just couldn't take a deep breath, I couldn't "finish" any breath. I would breathe in and feel like I was being stopped. Covid-19 is different than most pneumonias in that you can be extremely short of breath and your oxygen saturation can look fine. That is the part that was infuriating for my nurse brain. It didn't make sense. And I knew I was short of breath. I was not making it up, but it made me feel like people thought I was crazy. Luckily for me, I have an incredible physician. She listened to ME, not numbers. She knows my baseline and I wasn't there, so she worked with me every day to help me get back there, even when we were both frustrated and had no answers. I will always be grateful for that. I know not everyone is that fortunate. 

The only thing that helped at all for the shortness of breath was lying in the prone position. I would spend 5-6 hours a day lying over a pillow with barely enough energy to lift my head, but it gave me brief moments of relief from the constant pressure. 

So basically, the symptoms can be all over. You will likely feel ok in the mornings and like someone hit you with a truck in the afternoon. You will often feel like you're "making it up." You aren't. And you are not crazy. And you do not have to do this alone. Find someone who understands. Ask questions. Believe you'll get better, but it's ok to also be over it. It's ok to say this sucks. And it's ok to be angry. Just uh...hey, use that anger and help us get people to mask and distance, ok? We can use all the help we can get. :) Love and peace to all of us as we navigate this beast.

Edit: So after I posted this I somehow forgot to mention the INSATIABLE thirst. I spent many nights filling up my 32 ounce yeti cup with water all night long. I had to drink constantly in order to get any sleep at all. I believe this had to do with the neurological effects of covid. One of the worst of these is not being able to sleep. The insomnia is horrible. And I'm not just talking waking up in the middle of the night. I'm talking like sitting up for 8 straight hours, unable to sleep. Then when that does get better, you can be woken up gasping for air and a racing heart. Those things are gone for me now, and I'm honestly grateful I forgot! I was pretty sure that would never get better. Now my neurological symptoms are forgetting words, losing my train of thought, and a brain fog...and yes Dad, that is different than normal. 🙄 Hang in there guys!! 

 

Covid Kindness

 My name is Shannon Zanger. I'm a 38 year old registered nurse, and mother to 6 children. I was diagnosed with Covid-19 on 9/18/20. I'm currently on day 31 of symptoms. My symptoms included, early on, a scratchy throat, occasionally mild cough, and a low grade temp of 99. After day 8, my symptoms worsened and included shortness of breath. I was hospitalized for 10 days and received oxygen via nasal cannula, IV antibiotics, IV antivirals, steroids, inhalers, vitamins, blood thinners, etc. Although I'm no longer hospitalized, my symptoms persist. I spend at least 4-5 hours a day lying in the prone position (on my stomach) because it is literally the only thing that gives me temporary relief from chest pain/pressure. 

I know most are aware of this part of my covid journey, and that isn't the point of this post. My focus now is on the mental health aspect of this virus. As my symptoms continue, and render me essentially useless at home, I spend a lot of time thinking, and admittedly too much time reading Facebook posts. The latter has certainly been detrimental to my mental health. Of course the political climate is ridiculous right now, on both sides, by the way. But mostly, I find myself reading through tears the comments from people who KNOW me who question the severity or validity of this virus. I don't understand that. I specifically don't understand the claim that this will be "over after the election". What?? Does that mean that after November 3rd I won't have to inject myself with insulin 4 times a day? My heart won't race when I'm simply lying down and sleeping for an hour at a time, waking me with gasping for breath? Because if so, I'd love to see that. Why would it benefit me to make this up? This has changed my life. My biggest accomplishment during the day is being upright for longer than an hour at a time. I promise you I don't care who you're voting for, I'm miserable. 

And let's talk masks. Do they protect you from covid 100% of the time? Hell no! In fact, I'm guessing that masks may give less than 20% coverage if made with cloth. But you know what? That percentage is better than nothing. And combined with avid hand washing and MOST IMPORTANTLY social distancing, we can help to keep each other as safe as possible. 

I want normal life back!! I so badly want my kids to be able to play their sports again and go back to school. I honestly believe they could do that safely! However, I think we as parents should sacrifice our "need" to be present for games in order for our kids to be able to play. I hate that I would miss even one of my kids' activities. However, I love them enough to know that they need this part of their lives, so I'm more than willing to stay away or only attend outside events far away from other spectators. 

We can do this, Adam's County! We can care for others without knowing them. And I'm not "living in fear." Believe me, my family learned long ago that you can't live that way. What we are doing, is living in a caring and responsible way. I care about YOUR health. I care that you NEVER know what I have experienced at the hands of this beast. I promise to NEVER be the reason your child is on a ventilator, your friend is hospitalized, or your grandmother doesn't survive this. 

Reinfection is now a very real possibility. If you don't want to take my word for it (and honestly you should never take anyone's word for it. Look up your own information!!!), join a fb group called Covid-19 Support Group. It's an incredible resource for those of us considered "long-haulers". You may not know too many of us right now, but we are all over the world. Every race/country/ ethnicity is represented, and we all have the same story. Thank god for them, because eventually on this journey from hell you start to feel like you're insane. Seeing that others are experiencing the same thing is incredibly helpful. 

We don't sleep. And I'm not talking about a couple of hours here and there. I just sit up, awake. Or if I  do fall asleep,  I wake within the hour gasping for air with a racing heartrate. Our hair is falling out. We can't taste or smell our food. We struggle to breathe while being upright for longer than an hour at a time. Today, a fellow long-hauler, compared having covid to how she felt when she had chemotherapy. Immediately people came out of the woodwork agreeing that they do in fact agree that it is exactly how their bodies felt on treatment day and two days after chemotherapy.  Now, I have never experienced chemotherapy, but it makes sense to me as this beast has affected my entire body. 

Again, I'm not looking for sympathy! That isn't going to do anyone any good. What I want people to consider is that although you certainly hear stories of mild cases of this virus, do not turn a deaf ear to those of us who aren't, simply because it makes you uncomfortable.  There is no reason I should have reacted in this way. I'm a healthy person, with no underlying conditions. THAT makes people uncomfortable.  This is very reminiscent of when my son died and everyone wanted to know "how." Now, of course, some were interested in  our story, but mostly they wanted me to tell them something that would mean that THEY were safe; that their child couldn't contract something so awful. You could actually see the relief on people's faces when I mentioned genetic disorder. But the thing is, there is no safety net. A few days after Easton died, someone opened fire in Sandyhook elementary school. None of those children had genetic disorders, that I know of anyway. But those parents, like me, went home to an empty child's bed. The point is, you just don't know. Now, one could argue that if we're all in danger anyway, why care about preventing further covid spread? Here's why...you have no idea which end of the spectrum you'll fall under. None of us does. And you know, if there had been ANYTHING I could have done to prevent my son's decline in health, I'd have done it. You would too. Believe me, you'd beg for them to take your heart from your chest in order to avoid witnessing that last breath from your little boy as he lays in your arms. 

But I'm not asking you to take your heart from your chest. I'm just asking you to wear a mask and to maintain distance. That's all. Please, for me, for you, for our entire community, do these simple things. We can learn so much by caring for strangers, by modeling selflessness for our children. There is so much potential for love right now, so much potential for some covid kindness. 

Covid "Recovery"

 Today is day 26. Twenty-six days of dealing with this damn beast, and there are many times I wonder if I will ever return to my baseline function. That's a daunting thought when dealing with prolonged illness. And this is "just a virus." Believe me, there has been nothing "just" about this. 

I've been home from the hospital for a little less than a week now, and although that helps tremendously, the amount of fallout I'm battling related to covid is mind-boggling to me. When I first came home, and even now, I had to do some serious work on my blood sugar regulation. I'm not diabetic and my sugars hold pretty steadily around 250. But I've been known to hit the upper 300-400 range. That doesn't feel good, in case you were wondering. Because of elevated blood sugar, I am lethargic, my head hurts constantly, and I can't see more than 3 feet in front of me because my vision is so blurry. This makes balance difficult as well. When my sugar is really high, I'm pretty much incapacitated for awhile until I can get it back to a relatively normal range. While diabetics can live with sugars far outside the norm, someone who isn't used to having such fluctuations doesn't function as well. 

Aside from blood sugar, a major issue for me is chest pain. I continue to have a tightness in my chest that gets worse with exertion. I'm trying each day to push myself further because I'm SO TIRED OF BEING DOWN. But even a walk to the end of my cul de sac requires a break, and a forward leaning inversion so as to take some of the pressure off of my chest. The most disheartening part of this aspect is that from a medical standpoint, I'm "ok." My xray does not show permanent damage. I am not showing further signs of pneumonia. I'm so grateful for these facts, but I still can't breathe, and certainly not comfortably. It feels as though someone is wrapping saran wrap around my chest and pulling tighter and tighter until it is impossible for my lungs to move without the added support of leaving forward. I still lie prone on my stomach for a few hours daily just to give myself a break from the pressure/pain. 

I've recently discovered a support group of post covid individuals and it is so helpful. No one understands what we're living through unless they've been there. It's so helpful to hear that I'm not alone, and that I'm absolutely not making up these symptoms, because sometimes you just feel crazy. The group celebrates wins together and we encourage each other each day as much as possible. Today several of us celebrated taking a shower without falling over and/or needing a shower chair. There are many discussions daily about how often you are able to shower each week. It is a huge undertaking as our shortness of breath and balance issues make it an extremely difficult task. So many talk about the continued chest pain, shoulder blade pain, shortness of breath, hair loss, peripheral neuropathy, etc, for months after covid infection. Some people are going on 7 months of symptoms. Some have relief for awhile and then months later have a sort of "relapse". 

The point of this post is that this isn't over. This is a long, arduous process and for those of you out there wondering, like me, if this will ever get better, you are not alone. I'm mentally done as well. The steroids make me hungry and angry, but I can't eat freely because my sugars are terrible . I'm exhausted but want/need to have something that looks like a life. So I'll continue working and pushing my body to adapt and get better. So many out there are suffering the sequelae of this virus. Many are in far worse shape, and I'm grateful to only be afflicted in the ways that I have been. Just please know that when you say something about the "insignificance" of the death toll, or the "hoax" of this virus, you are hurting real people. We're not making up the pain, or the fear of our unknown future. Be mindful, and know that just because someone doesn't die from this virus, doesn't make us insignificant. We matter. And we're hurting. 

A Covid Story

 So it started in early March...all this talk, all this noise, all these "facts" being thrown around about this "new virus". The novel coronavirus...covid-19....I remember thinking, "really? This is worse than flu? People get really sick from the flu. It can't be worse." Then people started getting really sick, and worse than that, oddly sick. Sick in a way that modern medicine wasn't able to keep up. The hospital I work for started getting very serious and very nervous more quickly than I anticipated. We started paying attention,  I mean, REALLY paying attention. We started learning the new policy changes, and there were MANY.  The policy changes and the fear surrounding the unknown was incredibly draining. 

The uncertainty of the end of the kid's school year, and the eventual realization that school wasn't happening this spring was daunting as well. Then the "summer" came and all of the shutdowns and opinions and hate made for a LONG "vacation". Fast forward to the start of school and a new resurgence of fear and unknown policies started coming out of the schools. Teachers began asking the questions that we healthcare workers had  been asking for three months....more frustration. More debating.  More hate. 

We began to worry about mental health, and rightfully so!! Our elderly population, our children, our parents working and "teaching" from home...we're all going crazy. We crave socialization, even if only in small doses, it's just human nature. I began to allow my kids to do more with their friends. They needed it, right?! I was being a good parent. And you can't live in fear, right? I mean my family learned that in a horrifying way. So, how bad could it be? They understood my demands for mask wearing and were always compliant. They wash hands, socially distanced, and didn't argue when I asked them to refrain from some larger gatherings.  

And then...in the darkness of the early morning as I got up to go to work...."hey Shannon, before you leave will you take my temperature." Here we go. It was 99.9. But if he was asking, I knew it was legitimate.  So we did what I felt was responsible, called the health department, called our places of work, and got my husband Jeff tested as soon as the facilities opened. I planned to stay home from work only until he got a negative result. He was positive. But even before we found out about his result, I began to have symptoms. They were so subtle I was convinced it was the power of suggestion. Low grade fever, like 99.0 which is not considered a fever by most standards anyway, but I did also feel fatigue. But hell, I've got 6 kids and a full time job. Then the headache came. I was tested the next day. For the record, my initial result was negative. However, I knew I wasn't negative my symptoms, although still mild, persisted. I'm still so grateful I didn't go to work with that initial negative. My coworkers and patients deserved that precaution. 

The first 6 days of our illness was pretty mild. We were tired but nothing worse than any regular cold I've had. We oddly got fevers the same time every day but never very high. In fact, the highest either of us have ever gotten is 101.  The odd thing I found with a covid fever was that even though it was low, I felt that general malaise and all over pain rather quickly.  But still, very manageable. In order to shorten our children's quarantine as  much as possible and obviously in an attempt to keep them safe, Jeff and I moved out to our shed behind our house. We were very fortunate in our ability to do this and we're grateful. The only amenity we really didn't have that we needed was a bathroom, so we just masked up, told the kids to leave the room, and used our master bathroom in our bedroom. Our kids were never allowed to use it so only Jeff and I were being exposed in there. It worked well. But it was walking this distance that eventually helped me to decide that maybe I was declining. I noticed that it was getting more and more difficult to make it to the bathroom and back without taking long breaks afterward. This continued through days 7-8 and I actually went to the ER for lower oxygen saturation and difficulty breathing while walking. I was sent home thinking that was probably the best idea. But I was about to find out that this thing can change as quickly as they say. Admittedly as a nurse, it took my primary physician nearly scolding me and telling me to go back in before I finally decided to go.  After several hours of tests, it was determined that I'd be admitted to the hospital. However, I don't believe the physician on at that time believed it was necessary based on my numbers. At this point, it didn't matter to me. I couldn't breathe. I couldn't sleep. I couldn't eat because I didn't have enough oxygen reserve to get me through chewing. And whether my numbers were reassuring or not, that's not living. 

One of my biggest concerns about going to the hospital was my children. For all of them, illness and a need for medical attention of any kind means death. For them, people actually die and they all know it. I couldn't hug them. I couldn't reassure them. And even Dad couldn't offer comfort because he too is still quarantined in our backyard shed, unable to overcome daily fevers. 

So no, I'm not in the ICU. And yes, this is certainly "survivable", but I've gotta tell you, it has been anything but easy. Luckily our support system is incredible. We want for nothing. Our kids are loved and cared for from afar. Thanks to technology, in moments that I'm able to speak, I can facetime my kids and give them some smiles in hopes of alleviating some of their anxiety. 

I am on oxygen at all times. I have antiviral iv medication, antibiotics, steroids (and now routine insulin because steroids have made my blood sugar too high for safety). I'm on vitamin c, vitamin d, and zinc (and if I were you, I'd take those now just because). I leave my bed only to use the restroom. I'm unable to be up long enough to wash myself because it's too much work so I do what I can. Before covid, I was walking daily at least 2-3 miles and beginning to get back into running again. I cannot imagine getting back to that level of function at this point. 

I'm not looking for sympathy. I'm not even looking to lecture. I just want to give people a picture. It's a real picture from a 38 year old, relatively healthy nurse who "knew" what to look for as far as signs and symptoms. And let me tell you, I would have been wrong. Dead wrong. This is like nothing I've ever experienced before. And I'm just as frustrated and annoyed by quarantine too. I want so much for my kids to get back to "normal life", but I will NOT mess with this. Please consider increasing your vigilance, at least for the next few months. You don't have to be a complete recluse!! Just be smart! Wear a mask, wash your hands and distance!! Don't attend things that are truly unnecessary. And do masks work 100% of the time? Of course not. But they're a better defense than nothing. Just know that when they call you with that positive result and you start tracing back through your contacts, you will feel much better about your life if you didn't unnecessarily kiss a baby, or touch an immunocompromised person. You do not want to be the reason someone is lying over the end of their bed, gasping for air, and being truly terrified that their lungs are just slowly betraying them. Believe me, you don't.   

My nurses have been wonderful, and I will be a better nurse for having this experience. They are so kind and compassionate and caring. They're frustrated with the level of care their patients require, because they still see such a lack of care for safety in the community. They're covered in protective equipment all day long. They've listened to my cries of frustration, wiped my tears, and reassured me that I'm not crazy.  I never realized how much I rely on physical touch. We hug a lot in our home, just randomly throughout the day. But it's such a normal thing for us that I clearly took it for granted. I haven't felt actual human touch in a week. And it's one of the most bizarre feelings I've ever experienced. I don't wish it on anyone. 

Now, I don't mean to be all negative. I am truly grateful every single day that it is me lying in this bed and not my children. I know what it means to sit at your child's bedside and beg God to allow you to switch places, and for that prayer to go unanswered. I will take this a million times over if it means sparing them. Give it all to me. I will take it every time. They have no symptoms. And I do not take that good fortune for granted. 

While I don't know what recovery will mean for me, how long it will take, nor how many lifelong issues I may have as a result of this insult, I do believe I will turn a corner eventually. There will be a day again where I don't have to take breaks between sips of water in order to catch my breath. There  will be a time I get to wrap my arms around my  kids, my husband, and my very best friend. I won't have to see her through pictures and notes to me on the smoothies she sends me daily because she knows I don't have the energy to chew. Someday my kids won't have to ask me when they get to see me again. It will happen. It won't be today, but someday soon. 

Love and peace to us all as we navigate this most uncharted territory. Love your neighbors and even strangers enough to care about their health as well as yours.  We are all part of the solution. 

Tears That Never Fall

 I know I've touched on this subject before, but for some reason (likely the unprecedented nature of the current school process) this year is just a little harder. This post is for myself, as always, but also for those who struggle with this particular step in the child loss world. 

For those of you who can't open Facebook right now because you can't see one more post about someone's "baby leaving for kindergarten" or that their "chest feels tense" as their son or daughter goes off to college, I see you. I see your pain. I see your loneliness. I see your attempts at fitting in to the social norm of parenting. 

Let me clarify to those of my friends and family who don't know this pain. This post is not specifically about you. It's not about anyone in particular. And it's totally normal and even OK for you to feel those feelings as your child "leaves" you. However, what is equally ok, and much less represented is the feeling of those parents that have suffered child loss. That's why this post is therapeutic for me. I NEED for my feelings to be known too, and not because I need reassurance or some kind of weird apology from someone whose children are still here. I need it because these are the feelings that connect me to my child. And I miss him. My god, do I miss him. 

I will never reluctantly let go of my son's hand as he takes his toothless grin and oversized backpack into his first day of school. I will never feel the pull in my heart at both wanting him to flourish in college, while silently begging him to stay. Those are feelings that were taken from me when he took his last breath. That's the thing with child loss...you can't possibly know all the ways in which your child will "leave" you in that first moment after he's gone. Instead you learn that every day for the rest of your life. I would literally give anything for the burning in my chest to be there because instead of waking up with him in my house, I'd have to drive or even fly a few hours to see him. What I wouldn't give to be able to make THAT flight. And that doesn't diminish your pain or feelings of loss if your child is still here. They're valid, and noteworthy of course. But mine matter, too. And they cannot be commemorated in a fb post with a picture of a happy, healthy child doing exactly what is supposed to happen as children grow. 

Covid doesn't make this any easier, because of course everyone is fearful for their children to return to school, and I completely understand that. We have no idea what truly is or is not safe. However, as the parent of a chronically ill child, I look around and think, "this was my life for two years." There was potential danger around every corner. There were IMPOSSIBLE decisions, up until the very last decision I made. That one will haunt me for the rest of my life. And because of that time in my life, there was no first day of kindergarten. There will be no heart-gripping first day of college. 

So E, I'm sorry that you didn't get squeaky new shoes this year. I'm sorry that I didn't have to find you the perfect mask to match your bookbag. I'm sorry that while your classmates run and play, that you are remembered with an empty chair. 

It is difficult to send your baby to kindergarten for the first time. It is hard to see your grown child heading off to college. Forgive my broken heart when I say that these hardships are gifts, perhaps some of the greatest gifts you'll ever receive. Because as many tears as you will shed over these moments, the most painful and cruel tears a parent can experience are the ones that never get the chance to fall....

My Corona Brain

Hey, did you know there is some virus out there making everybody hella sick? Kidding. Most people who know me, know that I'm pretty adamant about people keeping their asses home right now. People are still leaving, despite the warnings to stay in place. Just do it. Don't make people beg. Don't assume your "reason" for getting out or seeing your friend is more important than someone else's. Just. Don't.

But actually, that isn't what I want to talk about right now. We all have our own ways of coping with our feelings during this pandemic, and I think writing is going to have to be mine. The thing is, like most experiences I have now, my feelings are maybe slightly different than the norm. I actually feel more normal right now than I have in about 8-10 years. While I realize that is an odd thing to say, the truth is, I've felt outside of the "norm" for so long that I didn't recognize "normal" when I started seeing it. In light of this insane turn in our daily lives, people seem to be more in tune with brokenness than usual.

Here's the thing....I learned a long time ago that we don't get answers all the time. That is something that we say to ourselves, regardless of whether or not we actually KNOW it to be true. When Easton first got sick, the hours before our world turned upside down, my life was incredibly, blissfully boring. In fact, I was complaining about what I was going to do with extra kids in my house all weekend. Little did I know, that beautiful, privileged "complaint" would be my last. I put my healthy, happy curly-headed boy to bed just as I did every night. When Jeff brought him to me at 3am, with the start of the first seizure, everything I knew about medicine, about the world, vanished right before my eyes.

When we loaded onto that ambulance, I "knew" it was scary in the moment, but we'd fix it. It would be fine. Man was this an awful thing to go through, but of course we'd look back someday and talk about the terrible night we had. Even as they moved him to an ER bed and started throwing IV lines in and pouring medications into his still seizing body....some part of the old me "knew" it would be ok. Even as they handed me scissors and I cut his red race car pajamas from his twitching body....I "knew". And even as his eyes closed and the tube was put down his throat, and the airplane landed, and I ran next to him to a place neither of us had ever been and they shouted orders all around us...I "knew".

That was the first day of my new life. The day I watched test after test after test, and stick after stick after stick wield no results, is what started my spiral into this new reality. You can have the best doctors in the world, and they can look into every  possibility, and you still will not get an answer. When we began the long road to recovery, I did every single thing I could think to try. Never underestimate the power of a desperate mother trying to save her child. But it wasn't enough. It never would have been enough. Didn't I deserve for my baby to live?  I tried so hard! Didn't I DESERVE for my prayers to work?? Because I DID pray. But no. The answer is no. And that's not a negative outlook or a defeated attitude. It's just true. Sometimes things just happen. Sometimes people get sick. Sometimes people die, despite your faith, despite your propensity to care for them, despite your NEED for them to stay.

So, having learned this lesson several years ago, every single day of my life since that day has been different. And right now, people seem to understand some of that on a small scale. After I watched my son die, I did get up the next day and the sun did rise. But it didn't matter anymore. Every day was the same. He was still dead EVERY SINGLE DAY. There wasn't anything I could do to change that. My new reality was one in which I could try with everything I had to get the world to bend to my will, and still not get what I wanted, or I could simply do what I could each day to make it to the next one. Right now, that's what's going on in healthcare. We are so used to making decisions based on scientific fact, on studies that give us answers. We don't have any of those right now. We don't have any definitive answers and the healthcare field does not do well without concrete answers. "This" is why we do "this". Because of this, the whole world is going a little crazy. At first we all "knew" everything would be fine. We would certainly talk about our terrible time someday, but we "knew" it would get better. As more and more people became ill, and we realized that this wasn't something that was giving us concrete answers, we became frantic in our pursuit of the elusive. Some have now settled into the feeling of living life in constant "fight or flight". We are worried at all times. We are neurotic with our hand-washing and our distancing. We are doing all the RIGHT things. So, the thing is, once you've lived in this headspace for so long, something shifts. I've heard so many people say, jokingly, that they just want to be drunk to escape for awhile. I don't think this is a joke for many. THIS I understand. THIS is exactly how I feel most days. And it isn't just drinking, it is anything that helps you to escape your reality for awhile. Because right now reality hurts. Reality is scary. And for just a MOMENT we want reality to go the hell away. YES! This is every day. THIS is why when asked if I fear death, I will always say no. I'm not suicidal (anymore). I'm just tired. I'm exhausted from living in a world that is constantly spinning in a direction that does not bring my son back.

I do live with more gratitude for moments that I would have missed before. I recognize the BIG that lives in the "small". And although that may sound lovely, I assure you that we are not made to CONSTANTLY live here. It makes you an outsider. You won't react to things the same way others do. For example, lots of graduations have been cancelled. While I know this feels like a rite of passage or something that is deserved, I can't get there. People who don't get to graduate will likely continue living and making new memories, and that will eventually be a blip in the radar of their life. So no, I'm never going to be able to cry about something like that. But that doesn't mean I don't want that for other people. I truly want others to be able to pour out big, crocodile tears over all kinds of milestones that normal people experience.

Do I want every person I know to lose a child so that they understand how I feel? God no. Of course I don't. But those fleeting moments of being finally understood, I have to admit, are welcome ones. So once again, my broken mother heart responds in a completely bizarre way to the world around me. In a world where we have never been more alone and disconnected from one another, I finally have small moments of connection.

Despite all of this, I don't want every person to know this way of life forever. I want people to go back to taking life for granted. I want people to whine about the mundane. I want someone to complain about hospital food because everything else in their hospital experience is going so well that they notice THAT. So stay the hell home. While this is a nice place to visit, believe me, you don't want to live here forever.