Deciding on the Unknown

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

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

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

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

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

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

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

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

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

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.

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.