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.

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.

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.

Social Distancing Perspective from Someone with Experience

As the world practices social distancing to slow the spread of covid-19, and local governments impose limitations that affect how your day-to-day looks, it turns out I have been social distancing for a long time. I just didn’t realize my life had a name. I also never expected people who weren’t dealing with a medically complex loved one would be living a lifestyle previously known as survival mode.

No social gatherings

I haven’t been to an event, a party, a large family gathering since September, 2019 (the month of our latest cancer diagnosis). The most crowded place I have been in months is the local children’s hospital. OK, there was the one trip to the mall near Christmas, but we were in and out as fast as possible, and only for the things I couldn’t get online.

No dining out

Haven’t eaten in a restaurant in…uh…a year, probably longer. It’s too much effort to keep all four kids well-behaved. Plus we have to bring our own highchair for Ben because he can’t sit independently and the highchairs provided by restaurants do have enough support for him. Celia was always too interested in all the other people there. So basically dining out is one adult walking around with Celia and preventing her from disappearing under tables, while the other adult feeds Ben, because he can’t yet feed himself. All while Virginia and Dexter try to annoy each other as subtly as possible, so they don’t get caught. Adult meals might as well just be ordered to go.

Eating take out is about as good as it gets for us.

No church services

I haven’t been to church more than twice since September. Celia stopped walking, so that pretty much means you need the double stroller to get everyone inside. The double stroller blocks the ends of 2.5 pews. You have to sit on the end, so you can leave Ben in the stroller, which is slightly uncomfortable for him, but the other option is for him to lie on the pew and hope he doesn’t wiggle off. Celia wants to sit on my lap at all times. About 75 percent of the children will be bored or start to complain at the same time – make no mistake, all four will complain about something, it’s just that three will do it at the same time. The twins will get restless because they are hungry or need naps, or both.

Add in Celia’s new normal was to vomit at a moment’s notice, which really made me think twice about taking her anywhere. I didn’t want to be associated with spraying people with projectile partially digested Pediasure, and selfishly I don’t like being covered in my child’s vomit without easy access to a change of clothes and a shower.

Lastly, there were times other parishioners would cough and I would worry, was that a my-throat-is-dry-cough? Is it allergies? Is it a cold? What if it’s the flu? How neutropenic is she right now (read: how much immune system does she actually have at this moment). Staying home was better for my sanity. And any time spent together as a family at home was precious.

Stay home

Well, I quit my job three years ago to stay home with my children because daycare for four was too expensive and two of the children couldn’t stay away from the hospital – still can’t. Since that time, I have not spent a single day or night alone. Seriously, I have been an on-duty parent to at least one child since 2016. No one ever takes more than three of them for the night, most often, it’s only the two older kids.

Use this time to rewatch a favorite show

Disney is on almost 24 hours a day at this point. When Celia is inpatient, she gets her way, because she is in the hospital. She has final say over what is on. If she sees a tablet, she requires the streaming service too. Additionally waking up in a hospital bed with familiar cartoons is more comforting that waking up in a dark hospital room with a nurse taking vital signs.

When she is home, she is required to share screen time with siblings. I actually get more control of programing when home, because she sleeps more there. But there still is a considerable amount of children’s programming.

Judge me if you want, but I don’t care. She has cancer. Chemo makes her feel terrible. She’s rarely home. Her life is unpredictable. She gets gets poked with needles all the time, including at home by her mother. And when she gets really upset, she vomits. She can learn to be patient and be a considerate person later. She’s only 3. 

Read more books

Does Facebook count? Last time I read an actual book was when I spent a week with my in-laws, two summers ago. With at least two adults on-duty, I had the luxury of mentally checking out and checking into a book. And I felt guilty then. Eventually I’ll have time for myself. Until then, short reading – blogs, news articles, social media – is about what I have the capacity for.

Limit outings to the essentials

Wait. You mean people don’t regularly only get out of their homes to visit the grocery store, the pharmacy, and attend medical appointments? Color me impressed. That is not my life, but it sounds luxorious. Most days my routine looks like this:

  • Wake up Virginia and Dexter
  • Provide breakfast and pack lunches
  • Drop them off at school
  • Return home, get Ben dressed
  • Feed him breakfast and pack a snack
  • Drop off at preschool (more recently this has transitioned to bus pick up/drop off and it’s amazing).
  • Give a Celia her morning meds.
  • Get dressed, her and me. Yes, this means most school drop offs happen with me still wearing yesterday’s leggings.
  • Start her feeding pump.
  • Clean some things? Dishes and laundry are the priorities.
  • What do we have today?* It’s usually oncology, which is multiple hours. One hour up, two to four hours in the actual clinic, and another hour back. Timing depends on what she needs and how busy they are.
  • Feed children something for dinner
  • Police the typical chaos
  • Send them off to bed
  • Give Celia her evening meds
  • Fall asleep while getting Celia to sleep because she only sleeps in your bed and doesn’t allow you to leave.

*Some days Ben has PT and OT after preschool. Some days we have no plans. On those days I aspire to pick up all the toys, vacuum, mop, clean the powder room, but some days all I can manage is to sit, breathe, enjoy the comfort of my own home because I probably won’t be there long. My current record is 32 consecutive nights in my own bed since Sept. 10.

Honestly, social distancing doesn’t mean much more than we (OK my husband and mother-in-law, because I basically live at the children’s hospital) are homeschooling the children. And I no longer have guilt over not signing anyone up for extra activities because all sports are suspended, and I assume scouts also is on hiatus.

You can do this

For those of you who are new to lying low, breathe. Learn to accept the uncertainty. Learn to be OK with not knowing how things will pan out. Basically, learn to be very comfortable with who you are and the people with whom you share a living space. You’ll gradually lower your standards and expectations. You’ll control what you can when you can, because the lack of control can be all consuming. One day, this will all be a memory.

In the mean time, use social media to stay connected with friend and family and the world around you. Thankfully this all is happening in a digital age, so being alone, doesn’t have to feel so alone. Join an online community. Make virtual plans – a video call, an online game with friends. The possibilities are endless.

Not the Story You Hoped to Hear

If you’ve read any of my other posts, you know my kids have a collection of conditions. Our most prominent conditions being cancer, hydrocephalus, cerebral palsy, and extreme prematurity. At lease those are the ones that seem the biggest in this moment.

When one (or more) of your children receives a diagnosis, the natural instinct is to start reading and researching. You want to be familiar with this beast that just plopped down in front of you and won’t move. You may even join an online parenting group to find out the things your research may not tell you.

For me, I thought I sought out online groups to learn more. But almost immediately, my questions and motives switched gears. I wanted to know I was not alone. Some of those diagnoses came unexpectedly and knocked me down. Others were suspected, at least a little bit. I’m an excellent Dr. Googler – LOL. Regardless of how the news hits, it’s isolating. I spent some time in my head, which for me, is not a good place. I need people. I need to talk or type through the fears and questions, and find the people who could give me real answers, advice, and validation. Those online communities became my lifeline in the early days.

I also found those groups so I could ask the questions I see a lot of newly diagnosed families ask. What does this mean? What will our lives look like? I wanted to know to prepare, but I also needed hope. I ultimately wanted to read that with time this would be footnote, and my children would grow and have typical lives.

Honestly, after the first year with the twins, when the hits just kept coming, I recognized and accepted that our lives would never be typical.

It’s OK to not be a “Success” Story

I here to tell you, our lives did not pan out the way I wanted or expected. But our lives are wonderful.

For the preemie parents: we did not make it home before our due date. We didn’t make it out without medical equipment. The NICU wasn’t the end of our scary days.

Our micro preemies left the NICU at 162 days old and 177 days old – that’s nearly six months. Before going home they had a combined five surgeries. One came home on oxygen. Before their first birthday, they had five readmissions and five more surgeries. Currently they are 3 and have added six more surgeries and eight more admissions.

If you saw them in public, it’s likely you would not guess they are 3. They often are thought of as younger, and less often thought of as twins.

For the hydrocephalus parents: at age 3, our son has undergone four shunt surgeries. We still are concerned about his head growth, his ventricle size, and shunt failure. We’ve been through one failure and one malfunction – they didn’t present the same way. I’m never sure if a stomach bug is just a bug or the first sign of a shunt issue. I don’t know if I’ll ever be sure. The only thing I know with any certainty is for my son, needing another brain surgery is most likely just a matter of time.

For the cerebral palsy parents: I don’t know what the long-term future looks like for my son. In the beginning I wanted to know he would walk and be able to play with his siblings. Earlier this month he received his first wheelchair. Will he always be in a chair? It’s anyone’s guess right now. But for now this is what he needs.

For the record, he LOVES his chair. He has always enjoyed being with his siblings. His siblings look out for him and I hope he doesn’t feel excluded or left behind. My goals for him at to be as independent as he can possibly be and live a happy full life — however that looks.

For the cancer parents: Late last year, a second child of ours was diagnosed with cancer. There aren’t as many second-time cancer moms, but we are around. I’d like to tell you it’s easier the second time, and while some things are, in general it still is hell. Cancer always is an unpredictable monster and this second time for us has been more involved and dramatic than the first time. We’ll get through, but it was not something we ever anticipated happening again. Apparently, there is no family cancer quota.

Life Has and Will Go On

Our lives continue to go on. Our children are growing. Our children are happy, at least they appear to be happy. Our children are loved. Our children are thriving despite their multiple health challenges.

I’ve reached a point in my life, where I will never say we are done with hospitals. Our story moves like chapters in a series of novels. Our story will never be over, it will just pick up a d move on in some unexpected way.

I will never announce to the world our children are living typical lives, fully recovered from whatever fresh hell they have experienced. And that is OK. This is our story.

Basically, it’s OK to come out on the other end and not be OK. It’s OK to not be typical. Whatever your story, embrace it, love it, and own it because it is yours.

Stop Forgetting Disabled Children Exist

It’s 2020. I should not need to tell you some children, like some adults, live with disabilities. But here we are.

Children, like adults, come in a variety of sizes and abilities. Children can be blind. Children can be deaf. Children have cerebral palsy. Children can have arthritis. This is only a short list of some things that can and do affect children. The list is long. The list for adults is long, so having an equally long list for children shouldn’t come as a surprise, but I would be willing to bet it hadn’t crossed your mind.

Some of you may even be thinking you don’t need this reminder, but you likely are wrong. Most people like to think they are inclusive, but they aren’t. They often forget children with disabilities exist. Sure, when they see a doll with crutches, or a cartoon character with a wheel chair, they think it is sweet to have diversity in toys and programing. But in your day-to-day interactions, it’s forgotten. When the little league parking lot is packed, you park in the handicapped parking spaces, or you park in the accessible space between those spaces. You give the mom using a handicapped placard with her young children the once over, assuming she is using someone else’s card. You readily post some product is rediculous and unnecessary, mostly because it was of no use to your typically developing child(ren).

It has to STOP! You must think before you speak, post, or joke. Your words can be hurtful and isolating. It’s time to think about other people and grow into a society of compassionate human beings who know at all times their personal realities are not necessarily the realities of everyone else.

I’ll give you two examples:

1. Internet Memes Aren’t Applicable

This lovely [insert eye roll here] meme. It’s popular among moms. I know the spirit of the message is to encourage moms who feel like they are drowning in motherhood. It’s supposed to tell you to hang in there, it gets better, and this too will one day be a memory.

The unintended, or at least I hope it’s unintended, message it sends to special needs moms is you’re not part of this parenting club. Your child isn’t like other children — your child is different. Believe me, we don’t need your meme to remind us our children’s childhoods look different from that of typical children their ages.

Everything preached to mothers in memes like this one is a big ball of maybe and hope for a lot of special needs moms, myself included. Medical professionals can’t promise me my youngest son with learn to walk, use the toilet, dress himself, read and write, and be independent. In all honesty, at 3 he can’t sit, he can’t crawl, he can’t feed himself, and he can’t talk. So while you are busy helping other moms to live in the moment because this is only a phase, some of us are stuck in survival mode, and will be for the foreseeable future.

Here’s the thing. As stressful as survival mode is, it does get better. We all find a rhythm and system that works for us, and life goes on. We set our own “normal” that includes medication times, doctors appointments, and therapy appointments.

If you are a mom who is new to raising a child with special needs, I will promise you this: you won’t always be so overwhelmed. Your life will get easier. Easier because you need fewer things as your child ages, or easier because handling your child’s extra needs has become something you don’t even need to think about anymore; that I don’t know. I just know you won’t always be so overwhelmed.

2. News Commentary Ignores Us

Very recently, I was watching the evening news on my local station. The station had information coming out of a national technology conference. An event highlighting new tech developments in a variety of applications. Normally, this segment of the broadcast would not have stayed with me. But I remember it clearly for two reasons.

First, one of the developments highlighted was a mind controlled video game controller. As information was reported, I was so excited. I thought, YASSS! As my son grows older, he will be free to love video games as much as his older siblings because regardless of how his fine motor skills develop, he will be able to play too. This is AMAZING!

My excitement was quickly turned into rage because of the news anchor’s follow-up comment. He said, “Wow, are we really getting that lazy?”

I will never forget his words. How can someone in the public eye be so obtuse to assume technological advances that essentially level the playing field for children with motor impairment was developed simply because we are lazy?

I know, I’m acting in typical millennial fashion, crying offensive at a simple on-air remark. I’m sure the anchor didn’t mean to be offensive. I’d be surprised if I learned he had a deep-seated hatred of people who are differently able. I know it was a comment made because he just didn’t think about it beyond his own reality.

BUT THAT IS MY POINT! We need to think before we open our mouths and make comments. Thinking about other people’s feelings and situations isn’t being a “snowflake,” it’s being an adult.

For eneratio , parents have taught their children to think of others.

  • Wait your turn.
  • Don’t push.
  • Share.
  • If you can’t say something nice, don’t say anything at all.
  • Think before you speak.
  • Make room for other kids to play too.

These rules should apply to adults too. Think before you speak. Take a moment and think about how other people may be affected. Just because something doesn’t apply to you, or even to the majority of the population, it doesn’t mean it doesn’t have a profound affect on another segment of the population.

I’m not asking for special treatment for children with special needs. I’m asking you simply remember they exist.

Facebook Year In Review: I Won’t Participate in a Fake Showcase

The near end of another calendar year means Facebook is showing you your “year in review” — a Facebook-made highlight reel of this past year featuring your “most liked” photos and videos. But is it?

The answer is simply, no.

I am convinced Facebook’s algorithm is designed to highlight what seem to be happy memories and not sad. I get it. It makes sense that photos of recently lost loved ones would trigger a flood of emotions around an already emotionally charged season. However, I need to point out, not everyone’s life looks the same. Let me repeat that louder for the folks in the back. NOT EVERYONE’S LIFE LOOKS THE SAME.

For me, I want to be as authentic as possible. I hate that social media is a highly edited, airbrushed version of life. A lack of authenticity will only leave you feeling alone and isolated. Life is not photo perfect. Life is messy and unpredictable; that is what makes it so exciting. And when you open up, you will find more often than not, you are not alone in your thoughts, worries, stresses, etc.

My life is far from a magazine spread. I am not your typical mom. I have kids who spend far too much time in hospitals to be typical. I have children with chronic health issues. I have a child with a prominent disability. This is my life. It may not look like your life and that is OK. If my life makes the masses uncomfortable or sad, that is not my problem, and I refuse to apologize for it. My life, my family, is beautiful.

I want my year-end highlight reel to include our real life, and the victories we had, no matter how unconventional they are.

Facebook thought my highlight reel should feature:

  • A photo of my youngest daughter playing.
  • A snarky weather report that told me I live too far from Miami to be a Golden Girl.
  • A video of my youngest son using a fork.
  • A photo of my older children’s first day of school.

Some of those items are fine. The video of my youngest son with a fork is absolutely a great memory. It was huge for him. However it was not my most liked video, which is how it was labeled. Here are the highlights I want to remember from 2019:

  • I changed an ostomy bag for the last time ever, and everyone pooped from his/her butt.
  • Two of my children learned a new sport – baseball!
  • My eldest daughter broke her arm.
  • My youngest son, for the first time in his life, had the ability to move around thanks to an adaptive toy car.
  • My eldest son got a crazy hair style.
  • All four of my children had a great summer of fun, and spent most of their days by the pool.
  • My youngest daughter remained spirited while battling cancer.

These are the events of my life. These are the times that matter to me. All these memories I want to look back and see highlighted, were shared with friends and family on Facebook. Many of them had significantly more likes or reactions than what made the highlight reel; the reel I can’t add content to; the reel that doesn’t acknowledge the struggles that make our happy memories meaningful. After all, I’m not asking Facebook to help me remember 2019 as the year 75 percent of my children had surgery…at the same hospital…within a four-month span. I’m not asking to remember this as the year I was told another one of my children had cancer.

All I’m asking is they make the algorithm smarter, or give people more control over the highlight reel’s content.

The Irrational Fears of a Mom with Medically Complex Kids

There are a lot of posts out there about mom guilt and worries that go along with parenting. Am I spending enough quality time with my children? Am I setting a good example? Is my child kind? Does my kid have friends? Am I enough for my children? The list goes on and on. I’m positive every mom has these fears and worries. It just seems to go with the parenting territory.

I could write about these thoughts and worries too. I have them. I promise, I’m a regular mom with regular problems. But I won’t, at least not today. These fears already have voices. Moms talk about them pretty regularly. Basically, we moms are already normalizing these feelings and thoughts.

The thing is, I’m not just a regular mom. I’m also a mom whose kids have colorful and eventful health histories. I’m the mom of kids who battled cancer. I’m the mom of a kid with a pretty prominent disability. I’m the mom of kids who were born too early. I’m the mom of kids have logged more nights in hospitals than there are days in a year. So in addition to all the regular mom fears and second guesses, I also have another list other irrational fears related to not being “normal.”

Just How Crazy is She?

I worry someone who knows nothing about my family will overhear something about my children’s health and will have me investigated for munchausen syndrome by proxy. I’m 80 percent sure this will never happen. I know the medical issues my children have faced, and continue to face are all real. I know they are not related to anything I did or didn’t do. I know I didn’t cause them. I know the medical professionals who see us on a regular basis know we are legitimately affected by these issues. I know our friends and family know we just have really bad luck when it comes to health. I know all of this, but it doesn’t matter. It’s always in the back of my mind. And if I’m being brutally honest, I worry that admitting I have this fear will make someone all the more convinced that I do indeed have it.

Less crazily, I also assume most people will think I am making all of this up. They wonder why I would make all this up, and then roll their eyes behind my back. I get it. The amount of stuff my family, particularly the children, have experienced does seem far fetched—too far fetched even for the plot of a soap opera, unless it was for the town as a whole and not just one character. Either way, I would not blame anyone who hears (or reads) my stories and questions the validity of them. I promise not to even be offended.

Her Advice is Crap

As I talk to other moms and exchange tips and tricks, I fear that my contributions to the converstions will be dismissed or labeled as what not to do.

  • She said she didn’t think it was important to have all organic baby soaps and lotions, and two of her kids got cancer.
  • She said she drank coffee and ate lunch meat while she was pregnant and she delivered three months early.
  • She said her children are allowed to drink juice and cows’ milk, and she lets them eat processed foods. Her kids are not straight A students.

I am 60 percent sure this is not what is happening. I am 90 percent sure this is my own mom guilt finding a new outlet to make me doubt everything about myself. I still carry around a lot of unfounded guilt when it comes to my kids. Maybe if I had taken my pregnancy more seriously and rested more, I would have carried the twins to term. Maybe I consumed too many artificial food products while pregnant and that’s why my daughters had cancer. Maybe I should have spent more money to buy hormone-free animal products and organic everything to protect my children from, well, everything. Basically I am victim blaming myself.

Wait is She Excited about this?

I worry I come across too eager when I learn someone else has an experience similar to mine. Was my facial expression too cheerful when that mom said she was looking for a wheel chair? Did I actually look disappointed when I found out she needed a wheel chair for her 90-year-old grandfather? Am I too eager to connect with the mom whose child was recently diagnosed with cancer? Was it too aggressive to send my number and email to the mom at church who also welcomed twins into the world too early?

I’m sure at one point or another all moms over analyze how they have approached another mom at the PTA, little league, the playground, storytime, etc. But I don’t think I worry about those every day interactions as much. I’m a card-carrying member of our PTA and I volunteer for nothing. I don’t go to meetings. I won’t work the book fair. I don’t even care if my lack of participation is one the PTA officers’ radar. I’ve got time, and there could be a whole new leadership team next school year. It doesn’t bother me if every mom at T-ball thinks I’m a horrible person.

However when it comes to moms who have kids who have issues like my kids’ issues. Well, it’s a small pool. When you find someone who knows what you deal with, knows at least a piece of your reality, you don’t want to scare her away. You really want her to like you so you can have one more person who gets how you feel. Someone who you can really talk to about things. Someone who can help you prepare for a sleep study, a night in the PICU, travel after NICU, or recovery after a major surgery. You need someone who can tell you which medical equipment vendors are the most reliable.

She is Failing Her Children

I worry people will think I am prioritizing one child’s health over another’s. I worry people will think I’m not providing enough physical therapy at home. That I’m not spending enough time helping my children become great readers, and I’m not helping them commit math facts to memory.

I struggle the most with this category, because this is where I’m not sure those accusations are entirely wrong.

  • I spend too much time with whichever child is in the hospital and not enough time with the kids who are home.
  • I don’t read enough with and to my children.
  • I haven’t prioritized my children’s emotional and mental health the way I have prioritized their physical health.
  • My disabled child could go to therapy more often and we could and should spend more time on excersises at home.
  • I’m slowly causing my children to resent me because we don’t go to school fun nights because I think it’s too overwhelming to take everyone and didn’t bother to arrange for a sitter.
  • They hate me because they don’t always get to play sports or participate in clubs because we don’t have the extra money, all because I stopped working to stay home and provide care for the younger children.
  • I rely too much on my mother-in-law to help us when there is a hospital admission; when a doctor’s appointment conflicts with school pickup; or simply when I can’t figure out how to be in two places at once.
  • I worry my children will grow up resenting each other instead of growing into compassionate adults because they were short changed or felt neglected in those early formative years.
  • I worry that I don’t worry enough. I should not be able to sleep at night with all that is going on in my life. I’m all too comfortable in hospitals. I should be suffering from PTSD or PPD/PPA. But I actually sleep just fine. I don’t have trouble shutting off my brain or switching gears. I don’t cry when we get a new diagnosis or go into surgery. And I worry that means I don’t care enough.

So?

Seems as though this mom is a mixed bag of crazy. I’ve got mainstream mom issues. I’ve got fill-in-the-blank mom issues. I’m pretty sure my issues are only in my head. I recognize them as irrational (hello, title of this post). Maybe I’m crazy. Maybe I’m normal. Whatever it is, if you find yourself having the same irrational fears and doubts, you are not alone. And if it turns out I am alone, well, I’ll just own my crazy.