First, people are afraid of what to say, and often say nothing. This is a mistake. Many people are afraid to bring up the deceased child, fearing it will open wounds and raw feelings. But in my opinion the hardest thing is when people don’t talk about Maddie. It feels like she was never here, and this is what is heartbreaking. It is nice when people say, “I thought of Maddie today,” of “I saw a kid in a dress like the one Maddie wore at whatever today.” Or “I miss Maddie.” These things help, not hurt. Make us feel she is not forgotten. Sending a keepsake with the child’s photo or name, things that help her be tangibly remembered are nice. We have received AMAZING things and we cherish everything.
Six years ago, one of my friends lost her father. I was living across the country from her, and I was terrified. I felt guilty that I had my dad and she didn’t. So I didn’t say anything, and I ruined our friendship for a while. I am very lucky she gave me another chance. She has been there for me since Maddie passed away. I have horrible regret about the whole thing – all I had to do was call her and say, “I’m so sorry.”
Religion is a potentially explosive way to comfort. Unless you absolutely know 100% percent the person will be comforted by mentions of faith, don’t go there. Religion is a very complicated thing in the wake of a child’s death, and they may be angry at God or confused as to how to incorporate the death of a child into the religion that they have known to have their best interests in mind. Even someone you know to be intensely religious may be having a crisis of faith in the wake of a child’s death, and could be angered/saddened by mention of religion. Especially stay away from, “God wanted her more than you,” or “God needed her more,” etc.
I don’t care if it is the all powerful creator of the universe, you don’t tell any Mama that anyone wants her baby more than she does.
So many people hate seeing their loved one in such pain and want to fix it. Consequentially, they start talking about how you have to move on, that you will see them again, the child is with God, it will get better in time, etc. All things they think will “fix it.” Don’t try to do this. Follow the lead of the parents. Discuss what they want…if they go to those places you can discuss those things, but don’t try to steer it there. Sometimes I want to talk about Maddie and the unfairness of it all, and other times I want to hear funny stories or talk about reality TV.
Don’t be afraid to show emotion. Many people feel they have to be strong for their friends, that they can’t cry or show emotion. I don’t think that is true. You can be strong AND be emotional. If tears come, don’t fight them. This shows your friends that you, too, are crushed and sad and lost.
Address the horror. People often worry about addressing how awful the situation is, but the parents want to hear that people get the hell they are in. The parents feel alone when they don’t think people understand how awful this is. Saying things like, “This is the worst thing. I am so sorry and sad that it had to happen to you and your child,” helps.
Food is very helpful. The last thing you want to do when mourning is worry about eating. There are always people around after a death, and the last thing you want to think about is feeding them. Mike and I never would have eaten if food hadn’t been sent to us. A gift of food also tells the parents they are loved.
Say or express something you never have before. If you have never told the person that you love them, come right out and tell them that you love them. If you’ve never held their hand, hold their hand. Give hugs. These expressions mean a lot.
Finally, my biggest advice is to not be afraid to take initiative. We often say, “let me know what I can do,” in a situation like this. Well, I can tell you that Mike and I had no idea what we needed. We were so lucky that we had friends and family rally together and just take care of things. A few came to town to help out. One friend organized food, another cleaned my house, two bought the clothes Mike and I wore to the funeral, one put together Maddie’s slide show, a few organized the reception after her service. I could go on and on. I didn’t have to worry about anything because I knew my friends and family would handle it.
Be there for your friends. Call, email, text. Tell them they don’t have to respond. Let them know you are thinking of them, and their child, all the time. Don’t drop away after the funeral – that’s when they’ll need you the most. Be the kind of friend that you would want to have.
Maybe you will read this and nod along thinking to yourself, “ugh, why do people say stupid stuff” or you have a friend or coworker that needs comforting and you don’t know what to say. Here are some tips on what to say and what NOT to say to bereaved parents.
WHAT NOT TO SAY:
“It’s so much better that it was so early or he was so young, or she didn’t have to suffer.”
No parents should bury their child. No matter HOW old or young they are. It’s just the wrong order of events.
“You’re young and have time to have other children.”
You don’t know how long we’ve been trying to have THIS child. You don’t know that I haven’t had a hysterectomy because of some terrible disease. You don’t know any details that would lead you to think this statement would be true.
“I know how you feel, my dog died last week.”
This was actually said to me at Charlie’s visitation. Kid you not. Enough said.
“Please call me if there’s anything we can do for you.”
This is a really sweet sentiment. But we don’t know what we need right now. I’m sure we need our grass cut, some meals, somebody to babysit our other children, or any number of other things-be creative. But we don’t have any clue what day it is or even how to put one foot in front of another. So we sure as heck don’t know what our to-do list looks like.
“Things happen for a reason.”
This is probably THE most insensitive thing anyone can say. Though this is true, that there is some “order of events” that our lives take and things happen in the order they are supposed to. BUT this is not a comforting statement and one that most people who are grieving a loss of a child, a diagnosis of a severe or chronic illness, a major accident or surgery that is life-changing, find offensive. If you take nothing else from this, DO NOT SAY THIS STATEMENT TO ANYONE. EVER. Thanks.
So, CharliesMom, what CAN I say to someone?
People get really funny around situations they are uncomfortable with. They panic when they don’t know what to say. They freeze and THAT is when stupid stuff is said.
Here are the basic rules:
1. Acknowledging the situation is better than saying nothing.
2. Saying nothing is better than saying something stupid.
3. Giving a hug and saying “I just don’t have the words to tell you how sorry I am” is better than saying nothing OR saying something stupid.
Other ways to offer comfort:
Send a card with a gift card to a local restaurant. It’s not flowers that die and it will get them out of the house which is normally needed.
Call and tell them you are going to be mowing their grass, shoveling their snow, pulling their weeds (or whatever fits) on Saturday.
Remember that food, flowers and help flows in for about two weeks. Then it’s like the rest of the world picks up and moves on quickly without the grieving people. The rest of the world doesn’t remember, or care that they lost their child or their child is sick. About a month later, or two months later, offer to help or to bring a meal or to take the mom out for a pedicure.
Acknowledge the child in the future. I cannot tell you how much I love this one lady. To this day, and it’s been seven years, when she sees my son Henry, she calls him Charlie. Every. Single. Time. She blushes and gets embarrassed until I tell her that it’s flattering to me that she remembers my baby that she actually never met. People like to hear their child’s name. And they like to know you remember and think of them.
Continue reaching out. If you are really close with the bereaved person, call regularly. I know I never returned calls, turned down lunch dates, didn’t want to go to parties but I had friends who were persistent and at a certain point, I was ready. And I said yes. Don’t give up on the person. They are hurting and are scared to have to leave their comfort zone.
JUST BE THERE. And don’t freak out when we start talking about our situation. If it freaks you out, you just need to listen and offer hugs and support. If you are a good friend, it shouldn’t make you uncomfortable, though.
Seven years down the road, the letters you sent, the meals you brought, the ear you lent, the shoulder you offered, the memories you helped us keep will be remembered.
And the insensitive stuff other people said will still sting when you think back on them
I found out yesterday that my biological father, Michael, passed away. I still don’t know how to process the news. I have been estranged from him for most of my life but he was always a constant figure on the back of my mind. My mom divorced him when I was a baby and married my step-father when I was three. My step-father is my father, he raised me, he walked me down the aisle and he has always been there for me.
When I was little, I would spend a little time with Michael and I have good memories of those times. As a kid you’re oblivious to the bad stuff. As I got older, I found out about all the bad things and I saw him less and less. He wasn’t a good man to my mom and my brother. He was abusive and mean to them. I struggled with that for awhile because I never saw that side of him. He was careful to only show me his good side.
When I was twelve, he went to jail.
That was the last of I saw of him. It was then that my parents realized he would never change so they stopped letting me see him. I went about my life. I’d occasionally get updates through the grapevine and I was fine with that. I would imagine sometimes that one day he’d be different and we’d be able to have a relationship.
When I turned 18, I tracked him down and gave him a call. I drove to see him by myself and spent the afternoon with him. It seemed like old times but was very awkward at the same time. We didn’t know each other any more, but we tried. We began speaking on the phone fairly often and were trying to get to know each other again.
It was nice, and I thought that maybe he really was a different person from the one my mom and brother knew. Then one day, I saw that side of him for the first time and it scared me. I never spoke to him again.
About a month ago, I received a phone call. He was in the hospital about to pass away.
I was devastated but I don’t know why. He was never there for me. He wasn’t my ‘dad,’ but I was still so upset. My husband convinced me to go to the hospital and make my peace. He came with me. I’m so glad I went, even though it was incredibly awkward. He was skinny and frail. He wasn’t the strong handsome man I remembered from my childhood. I stood and we spoke as if we were acquaintances, we didn’t speak of the past at all. We made light conversation for about an hour and then I left.
That was the last time I ever saw him.
My aunt called yesterday to inform me that he passed away. Apparently, he tried to smoke a cigarette while hooked up to oxygen and it didn’t end well. I feel awful that he went that way. I wish it could have been a peaceful death for him.
Since that phone call, my emotions have been all over the place; anger to sadness and everything in between. I still have the man I consider my father and Grace’s grandfather, but I still feel such a sense of loss. Mostly a loss of the future relationship I still thought I would one day have. I’m angry I didn’t have a ‘normal’ childhood with a regular family and a dad that wasn’t crazy. I have a lot of what if’s and they’re driving me crazy.
There is nothing I can change now. Everything is final. Our relationship will never change. He passed away alone, without me in his life and I feel like it was my fault. Like I withheld my relationship from him to punish him and he didn’t deserve it. The rational part of myself knows this isn’t true. He hasn’t tried to contact me once in the past ten years.
I can’t change any of that, I know, but I can focus on the here and now. I will focus on my daughter, Grace, and I will make sure she never has to go through anything like this as a child or an adult. I will focus on the father I do have in my life and let him know how grateful I am for all the love he has given me and that fact that he has been always there for me. He calls me everyday just to tell me he loves me. He IS my dad and Grace’s pawpaw.
I will chalk yesterday up to a bad day and try to move on with my life.
I can’t change my past but I can let it not affect my future.
Look, we’ve all been inundated with the news, no matter how hard we do try to stay away from the (rightful) fear-mongering and the moment by moment coverage of this year’s current enemy COVID-19.
The information I am gathering is primarily from the WHO and the CDC, at this particular moment, but should the information below become obsolete, you must let me know – becky@backtogether.com
One of the reasons I write these resource pages so religiously and with as much information as I can find is because I truly believe that knowledge is power, and the more you know about your disease/mental illness/physical illness/feelings/loss, the better you can feel in control. Is this page going to be a binkie? Will it make it all okay?
I wish.
But it’s a start, it’s not going to be alarmist, and I’m imagining that you’ll not see the same version twice as this is a relatively new virus and information is consistently changing. I’m asking you to please email me (don’t bother DMing me – I suck at it – ask anyone) if you see something incorrect or something to be changed: becky@bandbacktogether.com
Let’s start at the beginning:
What In The Hell *IS* The Corona Virus?
First and foremost, let me assure the thousands of people who actually dumped out perfectly good beer that this virus is not, in fact, related to Corona Beer.
And while Coronavirus (CoV) sounds kicky enough, it turns out that it’s not really it’s real name (LIAR). The virus we’re dealing with is from the FAMILY of coronaviruses, and all of these viruses are kinda assholes. This family of asshole viruses can cause anything from the normal boring cold to much more severe disease, such as the particularly kickily named SARS-CoV (Severe Acute Respiratory System)(REMEMBER ME!?! – sorry, the virus was talking.) the very highly specifically named MERS-CoV (Middle East Respiratory Syndrome).
May I just, *ahem* say that if there’s an opening for naming viruses, call me the fuck up, because these are LAME NAMES.
I want to squeeze you and love you and make you my own.
While SARS-CoV came from adorable adorable million-dollar cat pooping coffee bean machines, the MERS-CoV has been passed from dromedary camels – which are decidedly NOT cute – to humans.
I don’t this is really where its pee goes, but what do I know?
There are a couple of known coronaviruses are circulating in animals that have not yet infected humans. Ugly animals, keep your stinking coronaviruses away from us!
Where Did Its Exceedingly Stupid Name Come About?
Okay, so the international committee who names viruses (of which I should be chairman of the board), has actually named the new coronavirus “SARS-CoV-2” due to its genetic ties to the SARS-CoV disease. This is where it gets kinda confusing because people are calling ALL of the the things either coronavirus or CoVID-19. I can make you a comparison that should make it slightly less confusing.
People who get infected with the virus Human Immunodeficiency Virus (HIV) do not have AIDS, but HIV infection CAN lead an infected person to develop Acquired Immunodeficiency Syndrome (AIDS).
People who are exposed to SARS-CoV-2 CAN develop full-blown CoVID-19; but they may not.
Many other types of pathogens do travel through an intermediary animal reservoir -> bats infect other animals -> humans make some type of contact with the animal infected by the bat and -> go on to infect other people.
At this time, we know little about how SARS-CoV-2 is transmitted, where along the food (or outside) chain the virus mutated to be transmissible to humans, or even how the virus is currently being transmitted from person to person.
In the wake of the news that this virus (probably – remember, we do NOT know the whole story) may have originated from the Wuhan, the capital of Hubei in China, there has been an uptick in violence against people who come from China. Because THAT’S gonna help anything.
Working at the Band for nearly 10 (10!) years, I’ve seen a lot of stigma I’d assumed would take eons to change, do so overnight. But when people are scared and feel helpless? Some of us turn our anger outward. It’s not fair and it’s not right so let’s just stop being angry at people on public trans.
If you’re mad at someone? Take a look around to see who’s actually “managing” (or not) the cases in the US and abroad and see what kind of job they’re doing. See who’s lying to you about basic information: Despite the head pats and there-there’s of the current president of my country, you know as well as I do that things are simply NOT OKAY right now. They will be. When? I’m not psychic.
/steps off soapbox
Okay, So Get Down And Dirty With Me: How Does These Asshole Coronaviruses Work?
I did mention above that knowledge is power and I know about 98% of you tuned me out just now, but this is important. Knowing our enemy is the only way we can learn to defeat it.
Time to get all eye of the motherfucking tiger on this shit.
Coronaviruses have 4 categories (told you scientists need a bit more pizzaz!):
Alpha & Beta coronaviruses generally infect and reside in mammals, while Gamma & Delta are pretty much into infecting birds.
First isolated in the 1960s in humans, coronaviruses were considered pretty mild – generally, were you to get infected, you’d end up with a cold. No biggie. That is, until the really nasty coronaviruses mutated to allow for infection from animals to humans. Whoopee!
Now viruses cannot live forever without a host, which is why they must mutate if they want to survive, and it’s important to remember that the length of time that a virus can stay virulent (sorta like a robot) can last from moments to days, to months. As we’re not really sure what’s going on with Covid-19, we are currently unsure about how long it can survive on… say a doorknob.
So what can I tell you about the coronavirus that’ll help you understand it more completely.?
Coronaviruses are single-stranded RNA viruses that are encapsulated in a studded (ha) protein membrane.
Think of these viral as the asshole biker gang that goes into the bar and beats up everyone for… breathing? So these studded asshole biker gang viruses get into your body, they bastards attach their proteins to our own host cells, who are doing nothing but listening to bad music at the bar, and out of nowhere – because they’re greedy fuckers – they dump their OWN viral RNA into your own cell’s nucleus, which turns it into a zombie, churning out more and more of these bastard biker dude viral cells. Shitty bar music stops, your own cells join the nasty virus biker gang and set out to kick some innocent ass.
This is how the infection begins.
So how bad can it get? What factors determine how many bastard biker viral cells are made into our body and how sick will they make us? This depends upon a few things.
Less serious types of coronaviruses – such as the ones who cause the boring common cold – often attach their viral biker genes in higher places in your respiratory tract; like your throat or your nose. But the fucking bad asshole biker viruses ride on down deep into your lungs and bronchial tubes, overwhelming your poor innocent cells and leading to increasingly serious infections.
Another factor that can lead to different symptoms and severity is the genes involved. Different proteins mean different genes and scientists believe that the virulent (bad-ass biker fuckheads) viruses might have better and more efficient ways of attaching themselves to our host cells. Some of these SARS-CoV-2 strains have developed mutated proteins that can attack your immune system – so when your immune system goes on the attack, you actually become sicker.
Here’s the down and dirty: we don’t yet know a lot about the mutated strains of SARS-CoV-2.
I will update this as I locate more credible information. As always, email me if/when you find more (credible) information: becky@bandbacktogether.com
What Are The Five Phases Of Infections?
Sounds boring, but I promise you, as we learn more about CoVAD-19, you’ll need to know this information, so bear with me:
The incubation period happens after a person is infected with a disease – and the pathogen (in this case, a virus) begins to multiply inside of us. During the incubation period, there aren’t enough viruses or infected cells to cause any symptoms in you, so you don’t know that you’re actually ill. These incubation periods can vary from hours, to days, to months, to years based on the pathogen. In this case, the incubation period of CoVAD-19 is unknown and whomever has the disease is completely unaware. Per the WHO, most estimates of the incubation period for COVID-19 range from 1-14 days, but most are commonly seen around five days. These estimates will, obviously, updated as we learn more.
During the next stage of infections, called the prodromal period, the pathogen, in our case CoVAD-19, keeps on doing it’s multiplying thing, your immune system kicks in, and you start to feel kinda sick. The symptoms you’re feeling though, they’re not major and you can easily write them off as a cold or allergies. Some people report a high fever, malaise (sleepiness), and a dry cough. Others have reported aches and pains, head congestion, sore throat, and a runny nose, but the onset is gradual.
The next stage of infectious diseases is followed by a period of illness, in which symptoms become increasingly severe. This is likely when someone who has CoVAD-19 would seek hospital treatment
Following the period of illness, is a period of decline. It is during this period that people who have infectious diseases, such as CoVAD may experience secondary infections due to their weakened immune system. Their weakened immune system may make it harder and harder to fight off the CoVAD-19 virus, and some people will die during this period.
The final period of an infectious illness is called the period of convalescence, in which the person will very, very slowly (generally) returns to normal, although some studies have indicated that certain types of CoVAD-19 may inflict permanent damage that the body cannot fully repair.
What Are The Symptoms Of The Coronavirus?
At the time of this writing, this is more nebulous territory, but I will go on with what I’ve learned from the WHO, because it’s what I have right now.
Since we are mostly unaware of the stages of infectious diseases as shown above as this is a relatively new virus, this is what I’ve pieced together from the WHO website.
The most common symptoms that appear in those infected may include:
A dry cough
A fever,
Tiredness
Other people have reported symptoms like:
Nasal congestion
Sore throat
Runny nose
Body aches and pains
Diarrhea
Generally, these symptoms come about gradually and get worse. Current estimates are that about 1 in 6 people who becomes infected by CoVID-19 becomes seriously ill enough to need medical help to remain breathing. According to most recent estimates, 80% of people who are infected recover from the CoVid
Some of those who are infected by CoVID-19 don’t always develop symptoms.
Okay, So How Do I Get Coronavirus? Like, How Does It Spread?
Sighs.
This is the part I wanted to avoid discussing, but here we are so here we go.
While initially thought to be transmitted through a fecal-oral mode of transmission (maybe THAT’s the reason for the TP shortage?), that’s simply too easy to combat and wouldn’t account for the ever-mounting death toll. It is now thought highly unlikely that anyone could catch CoVID-19 through the fecal-oral route.
No, the latest evidence that the WHO has is that the COVID-19 is transmitted through the air. Meaning that if you’re in contact with someone who has COVID-19, this virus can be spread one of two ways:
From the passage of droplets of mucous from the nose and/or mouth spread by the person who has COVAD-19 coughing or sneezing near you. You snort those droplets up and BOOM – infection. TLDR: Stay 3-6 feet AWAY from the a person who is sick.
Since the virus (as of yet) doesn’t have tiny drones flying these droplets into your nose and mouth, so the cough or sneeze from an infected person lands on surfaces around them. When someone goes to touch these droplets (we don’t yet know how long the virus is able to live on inanimate surfaces), then touches their mouth, eyes, or nose can pick up this nasty bug. TLDR: Wash your damn hands, DRY THEM PROPERLY TOO, and stop touching your face.
Okay, so how long can it live on surfaces? The WHO (like the rest of us) isn’t quite sure, but based upon what they know about similar coronaviruses, CoVID-19 may last from a few hours to several days – all depending upon environmental circumstances. Again, this is going to need to be updated. OH, and in the meanwhile, wipe-down anywhere you expect that someone might have coughed or sneezed with a disinfectant and wash your damn hands.
Can I Catch CoVID-19 From Someone Who Is Asymptomatic?
Good question and one the health experts (NO, NOT ME, ACTUAL SMART PEOPLE), aren’t quite sure of as of this writing.
As the virus is thought to have spread through respiratory (nose, mouth) droplets from someone who has symptoms to someone who does not, is thought of AS OF RIGHT THIS SECOND AS I AM TYPING THIS to be low.
If you have have to go to work, ignore the rest of what I’m saying.
Before you go all YOLO-ing around in big drunken groups, assuming that you’re invincible, like a bunch of fucking assholes, listen carefully:
In the early stages of the disease CoVAD-19, your symptoms may match that of a common cold or allergies. So you DO NOT KNOW if you have the disease, and if you do? You’re coughing and sneezing all over other people (even if you’re feeling YOLO) and you may infect them.
(again, if you’ve gotta work, you’ve gotta work.)
Yeah. Way to be a fucking asshole, asshole.
(if you can) STAY HOME.
You SAID This Was Probably Caused By An Animal That Transferred It To A Human. Is That A Lie?
Okay, this I did say, because this is typically how Coronaviruses work and it’s VERY likely that our very own CoVID-19 was transmitted by an animal to a human.
But does that mean FIDO or PUSS n BOOTS is okay?
Most likely.
There’s a suspected case in China where a dog got sick from CoVID-19 (MAYBE), but have yet to see this anywhere else.
Let’s Do Some Busting Of Myths:
Every time a new disease pops up, there are a zillion million myths that spring up to help symptoms and/or prevent us from getting the disease. Sometimes, desperate people even buy into them. From the WHO, here are some common CoVID-19 myths debunked:
Myth Says:
Science Says:
You can't catch CoVID-19 in really hot and humid places.
False: Science Says that CoVID-19 doesn't care about the climate.
You can't catch CoVID-19 in cold, freezing temps.
Science Says: yet again, CoVID-19 doesn't seem to give a crap about the temperature of its enviornment
Mosquitoes transmit CoVID-19
Science Says: Nope. This new virus is spread by respiratory droplets from human to human and does not (at the time of this publish) transmit through blood.
CoVID-19
Aunt Becky LOVES garlic, but science says that while garlic might have some anti-microbial properties, we have no evidence that it can prevent transmission of CoVID-19.
Taking a REALLY hot bath kills CoVID-19.
Science woefully admits that not only does taking a really hot bath not protect you whatsoever from the coronavirus, it also can burn you.
Those UV disinfectant lamps can be used to kill CoVID-19 on my skin.
Science says? Not only will it not kill the virus on your skin, it will also irritate your skin, leaving you open to other infections.
Surely, spraying my whole body with alcohol, chlorine, or bleach should kill CoVID-19... right?
Science Says: alcohol, chlorine, and/or bleach will not help you once the virus has entered your body. These supplies are used to disinfect surfaces, not people.
Okay: are there specific meds that I can take to prevent infection by CoVID-19?
Science Says: currently, no, but scientists are working around the clock trying to create a vaccine or other medicines that may help prevent infection of CoVID-19.
Should I stockpile old antibiotics?
Science Says: No. Antibiotics work for bacterial infections only; they do not work for viruses, such as CoVID-19.
I'm young, healthy, strong, and I've got no medical issues. YOLO, RIGHT?
Science Says: STOP RIGHT THERE. While it appears that older people and people who are already ill are more susceptible to CoVID-19, no one is immune to this virus. Stay home. Don't infect other people.
Okay, should I rinse out my nose with saline several times a day to prevent infection with CoVID-19?
Science Says: There's currently no evidence that this would help prevent infection by CoVID-19.
This year I got my flu shot AND my pneumonia vaccine. I'm in the clear, right?
Science Says: We wish. We really, really do. The vaccinations you have received should protect you from some types of viruses, but as of this publishing, no vaccines for CoVID-19 have been developed.
I added a few graphics because the illustrations tickled me – not because any one is any more important than the other.
We need all the rib tickling we can get right now.
