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.

Author: Momming Good Bad Ugly

Leslie is a stay at home mom of four - two girls and two boys, including a set of twins. In another life she worked in healthcare public affairs, and spent the her first seven years of motherhood working outside the home. Motherhood is nothing like she anticipated. She began writing again to both process the curve balls her children throw, and to drown out a decade's worth of animated programming.