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.


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.


Best Ways to Help When Your Friend’s Child is Hospitalized

When a friend calls Scratch that. I’m going to be real and honest. When your friend texts you her child is in the hospital, there will be several things running through your mind.

Oh shit! • Jesus, what happened?!? • What’s wrong? • Are you OK? • Is there anything I can do?

It’s that last question/gut response, “Is there anything I can do?” that is the hardest one for your friend to answer. Her world has most likely just been rocked. She can’t breathe. She is so focused on what is happening with her child, that she can’t think about much else. It’s completely understandable. Of course she isn’t thinking about non urgent needs when her child is having an emergency. But we all ask it.

For many, it’s a foreign concept to have a child in the hospital. For some, it’s an all too common occurrence. Lucky for you, I’m the latter, which is why this post is possible.

Before I get into the ways to help, you need to know one important thing. YOUR QUESTION WILL NEVER GET A REAL ANSWER FROM YOUR FRIEND. It’s not that your friend doesn’t need things. And it’s certainly not that your friend doesn’t think you would help. It’s going to go unanswered because she is busy processing the hospital life. Or it’s going to go unanswered because everything she can think of is too big to ask. Let’s face facts, as women we put ourselves and our needs dead last. All the time. It’s like we don’t think we are worthy of help, but that attitude is a completely different post. I’ll get back to the task at hand.

I’m going to break the best ways to help into two categories: things you can do for your friend, and things you can give your friend. Both categories are equally important.
Services to Provide
Things you can do for your friend while she is in the hospital with her child. Many of these items only require your time.

First, don’t ask open ended questions about how can you help. She doesn’t want to make decisions. Coming up with ways for you to help, may only add to her stress. It’s best to offer a specific way you want to help.

  1. Clean her house, or a portion of her house. Housework is the furthest thing from your friend’s mind right now. You can either offer to clean her whole house, a room or two, or just offer to vacuum. This is totally up to you, and this service at any level is greatly appreciated.Just be sure to assure her as much as possible that you will not judge the current state of her home. The goal of this one is to give her less stress. The last thing you want is for her to worry about cleaning before you come over to clean.
  2. Cut her grass. Yard work, like house work, is not at the top of her priority list. This one might even go unnoticed for a little while, but it will be appreciated. Whether your friend is traveling from hospital to home and back again, or if she is staying with her child for days (or weeks) at a time, the last thing she wants is to notice her lawn resembles the Serengeti.
  3. Feed and walk her pets. If your friend’s family includes animals, they are probably not getting the love an attention they normally receive. Tell your friend you would love to come over to feed her dog, walk him and play with him. Offer to feed her cat and clean the litter box. Stop by to sprinkle food in the fish tank. You get the idea.
  4. Wash her laundry. This one is especially helpful if your friend is sleeping/showering at home. Or if your friend has other children at home. Daily needs don’t stop just because one child is in the hospital.
  5. Pick up her other children. If your friend has other children at home, offer to take those kids to and from school. Offer to take the other children to a park or a movie. Arrange a play date for her kids and your kids.
  6. Bring her a meal. This could be for the family members at home, or bring her something to eat at the hospital. Hospital food is expensive and has the habit of getting really old, really fast. Whatever you have made for dinner, save a serving in a container and drop it off to her.
  7. Loan her the password to one of your streaming services. This is why these things come with different profiles, right?
  8. Visit her. This one is tricky, because not everyone is up to having visitors, and your friend doesn’t want you to make a special trip to see her (you know, because she puts herself last). Hospitals can be very lonely, so visitors are a treat.

Gifts to Send/Give
Maybe you don’t live in the same city/state/region as your friend and you want to do something from afar. Maybe you and your friend only know each other through social media. Maybe you are busy with your own life. Whatever your reason, sometimes we prefer to throw money at things. So here are the things you can send to your friend whose child is in the hospital.

  1. Gas. If your friend is doing a lot of driving back and forth to the hospital to spend time with her child, she will LOVE a gift card for gas. A gift card to a popular gas chain in her area will buy her gas of course. But it will provide her snacks, coffee, breakfast, bottles of water—whatever your friend uses to keep her going in high-stress times, they have it at the gas station.
  2. Food. There is so much you can do with food. You can send a gift card for groceries, because if she has other children, they will need to eat too. You can send gift cards to an eatery near the hospital. Or find out what she likes and send a meal delivery service. Whatever you do in this category will not be wrong. She will need to eat.
  3. Caffeine. Similar to No. 2, send your friend coffee, tea, soda, or whatever her caffeinated beverage of choice is. You can send gift cards to coffee shops. Or you can mail her coffee pods, boxes of tea bags, a case of soda, etc.
  4. Money. This can be really awkward depending on your level of friendship. But you also could send gift cards to Amazon or Target. This makes the list because no matter how prepared she is for what is happening currently, there are bound to be items she forgot, or items she never knew existed that she suddenly needs. This could be money for a hands-free pump bra to make pumping breast milk for her infant easier. This could be for washable face masks to help protect her child fighting cancer from other people’s germs. This could be for a new pack of underwear because she simply did not bring extras with her and she’s afraid her significant other who is more than willing to bring her things from home will bring a pair she doesn’t want. Of if you are sending money, it could be what she uses to pay for parking at the hospital; what she pays tolls with when she drives to the hospital; or what she uses to buy breakfast, lunch, or dinner whiles she is at the hospital.
    • Contact the hospital where your friend’s child is staying and find out if you can purchase parking vouchers or gift cards to the hospital’s food court.
  5. Activities. Send age appropriate activities to your friend and/or her child. This could be games to occupy their time. A gift card for Apple or Google Play so they can download new apps, or spend money on extra game lives to occupy their time. Send coloring books and crayons or colored pencils. Send crossword puzzles, word searches, jumbles, Sudoku. Anything that helps pass the time while sitting in a hospital room.
  6. Care package. Send her some basic survival items. Lip balm, tissues, lotion, hair bands, fuzzy socks, a water bottle, a travel mug, and some snacks.
  7. A cleaning service. The last thing in the world she has time to do is clean her house. However, when she is home, she will notice if the floors haven’t been mopped or the sinks haven’t been wiped since before her child was admitted. The last thing she wants to do is clean, and she probably doesn’t have the energy to do it anyway.

Surviving Your Child’s Hospital Stay

When you are expecting a child, you dream about the future and you worry about the what ifs. But the thing is, the what ifs we worry about are the common challenges kids face. What if my child isn’t walking by 1? What if my child is bullied? What if my child has an allergic reaction? We don’t tend to wonder about the less common scenarios.

They say it takes a village to raise a child. In the digital age, a BIG component of your “village” comes from online communities. Visiting parenting boards, you’ll find many (probably too many) posts asking about rashes, the normal color of poop, whether a fever is high enough to warrant a trip to the nearest hospital’s emergency department. And just like the questions, the advice will vary dramatically.

Source: Reddit, Shit Mom Groups Say

As great as parenting groups can be, and as helpful as parenting sites can be, there are some subjects that aren’t discussed often, and maybe not ever depending on the make up of your group. I for one have never seen anything ever asked or shared about what to pack if your child is going to the hospital. We talk all the time about what to pack when you deliver a child, but we don’t talk about what to bring to the hospital when your child is admitted. I would like to think this is because it’s not very common, but having stayed with my children multiple times in a dedicated children’s hospital that reports 9,000 visits a year, I can tell you children are staying in hospitals more often than we think. I want to help close the information gap. As Liam Neeson’s character in Taken said, “… I do have are a very particular set of skills. Skills I have acquired over a very long career.”

I have logged a lot of days and nights in hospitals with my children. If you have a child who is facing a hospital admission, you have a lot on your mind and one of the things you might not be thinking about is packing for your child’s stay. So I present to you, a list I hope you find useful for your child’s hospital stay.
For Your Child:

  • Pajamas. How much and how many will depend on your child’s age and the reason s/he is being admitted. Keep in mind, if your child is having surgery, the surgery site will be examined often by nurses, attending doctors, and surgeons. You want to keep this site easily accessible. A lot of the time, a hospital gown will be your best bet in those early days. But if your child is being admitted for a treatment, (e.g., chemotherapy) you will have more use for regular pajamas. Additionally, your child’s regular pajamas will provide a layer of comfort to the experience. I recommend pajamas with short sleeves to make it easier for nursing staff to access and assess IV sites. If your child is a tot, I also recommend bringing tops that are a size bigger than what your child normally wears. Hospital stays can mean monitoring wires. While the wires themselves aren’t terribly cumbersome, most pajamas for young children are tight fitting because it’s safer in the event of a fire. However in the hospital, a tight top + monitoring wires = toddler crop top.
  • Robe. Regardless of why your child is going to the hospital, a robe is always a good idea. Even if wearing pajamas from home isn’t feasible, a robe will work. IV lines can follow the arm up to the shoulder and exit from the neck of the robe—all without disconnecting and reconnecting. Additionally a robe will provide your child with warmth (hospitals are freezing year round) and a layer of privacy/modesty because hospital gowns, even when tied aren’t guaranteed to cover all butts, and they can be very thin. Added bonus, robes are easier to use as a cover than blankets when traveling in the hospital via a wheelchair.
  • Socks. Hospitals are cold. Period. End of story. It’s better to pack the socks and not need them than to be stuck wearing scratchy hospital-issued non slip socks. If your child has socks with grippy bottoms, that is best, but if not, just make sure your child has some shoes that are easy on and off for when it’s time to walk around the unit or to walk to the scale to be weighed.
  • Favorite lovie. For a really young child, this goes without saying. But for your elementary school-aged child, it might be a nice touch of comfort. The hospital can be scary, and something soft and familiar to snuggle is nice.
  • Going home clothes. Duh. I knew you would know this because I, unlike your 4th grader, don’t think you are dumb. This item is here to highlight that your child’s going home clothes should be compatible with your child’s recovery. For example:
    • Knees after surgery are bandaged quite thickly and loose athletic pants or shorts (mostly shorts) will be the easiest to pass over that spot.
    • Bellies, particularly after abdominal surgeries are tender, so avoid items with stiff waists or thick elastic. Pick something loose and comfortable.
    • Heads after surgery might be bothered by shirts passing over, so shirts that have loose necklines or ones that button all the way up are likely better choices.

For You

Here is the meat and potatoes of my post. Why? When your child is the patient, a lot of necessities will be provided to him/her. You as the parent staying bedside will need a lot more items to make it through the stay.

  • Clothes. Again, hospitals are notoriously cold. I don’t care if it is 95 degrees outside, pack like it is fall. Long pants, socks, and layered tops. For me, my standard hospital attire includes leggings, tank tops, soft sweaters (especially ones with pockets), and fuzzy socks. I bring the same items in January as I do in July. The goal is to be comfortable and warm.
  • Slip-on shoes. You want something easy off and easy on. Flip flops, sport sandals, Crocs™, and mules are great for hospital life. So are slippers with hard soles.
  • Toiletries. This one should be common sense. Pack your toothbrush and deodorant in the very least. You want to pack light but it will not hurt to be prepared. Dry shampoo and cleaning cloths are always useful. In my experience, your child’s hospital will have a shower you can use. However the water won’t be super warm, the water pressure might be iffy, and the water flow may not leave your scalp feeling like it’s super clean. Additionally, if your child is transferred to the pediatric intensive care unit (PICU), our you are in a small hospital, or an older hospital, that shower will be shared with other families.
  • Moisturizer. Hospitals are not only cold, but they are dry. Your lips and hands will thank me if you remember to pack a lip balm and a hand lotion, and your face will thank me if you pack a moisturizer.
  • Chargers. In this digital age of entertainment and connectivity, bring charging cords and wall cubes. You’ll be sorry if you don’t have them for in-room charging. If you do forget them, fear not, many hospitals offer charging stations. Forgetting these items just means more time away from your child to sit next to a charging station. If you have a wireless charger, it’s never a bad idea to pack a charging cord as a back up. My wireless charger has a tendency to randomly stop working while staying in the hospital.
    • Similarly, bring additional devices for longer stays – a laptop, a tablet, etc. It will only help you occupy your time while your child is occupied with sleep or surgery.
  • Travel coffee mug. If you don’t drink coffee are you even a parent? Kidding, my husband has been off coffee for a few years. I, like every meme you’ve ever seen about mothers, rely on coffee to be my all important crutch that gets me through the day, the week, the month, the year…my life. Some hospitals will have free coffee available to parents. Other hospitals will only have coffee available for purchase. In either scenario, a travel mug will only keep your coffee warmer longer. Plus they are more sturdy than paper or foam cups.
  • Water bottle or reusable straw cup with a lid. See the previous comment about being more sturdy than a paper or foam cup. You’ll want a cup with a lid because it will help keep germs out of your drink. And remember my comment about if your child needs to stay in the PICU? The intensive care floors may ONLY allow drinks in containers with lids.
  • Money. You’ll need food for yourself and whether it comes from the cafeteria, a chain inside the hospital (common in large urban hospitals) or a vending machine, you’ll be paying for it. Depending on where your hospital is located, delivery services may also be available.
    • For the large urban hospitals, you may also need to pay for parking. Some hospitals may validate parking for a parent staying with an admitted child, but it’s not a guarantee and multiple days add up quickly. So on this note, if you know you will stay more than a day or two, consider making arrangements to not have a car at the hospital for your entire stay.
  • Snacks. Depending on your child’s age and condition, you may not get too many opportunities to eat. Packing protein bars or quick snacks will make you feel like a genius. It also is helpful on the wallet too. Fewer snack trips to the gift shop, canteen, cafeteria, or vending machines.
  • Light reading. I recommend magazines instead of books because they are easier to pick up and put down. In the hospital people are constantly coming in and out of your child’s room. Nurses on average are coming in every two to four hours. Doctors come in and out on rounds, and depending on your child’s condition, you may have multiple services stopping in to see your child and answer your questions. So pick reading material you know will be easy for you to stop and start again.
  • Ear buds. This one is great if you have a young child who will fall asleep before you and who would be bothered by the sounds of TV or video streaming. Although come to think of it, earbuds are helpful if you have a preteen who watches hours upon hours of shows about kids in high school who don’t do anything you remember yourself doing at that age. Basically pack ear buds if your child will fall asleep before you, or if your child has terrible taste in TV.
  • Flashlight or battery powered dim light. The lights in hospital rooms are bright, really bright. If you have a child who will fall asleep before you and you would like to stay up to read, work, or maybe write a blog post; you are taking a huge risk by using the lights in the room. You will be safer and your child will be more likely to sleep if you have soft dim lighting instead of very bright fluorescent lights.
  • Pen. You never know when you will need to make a note of something, or when you will luck into a magazine with a crossword puzzle.
  • Reusable bag. This one could have many uses, but if your child’s admission is for a longer amount of time, e.g. more than three days, use this as a laundry bag. Kids puke, things spill, and if you live at the hospital with your child for weeks, you’ll run out of clean things to wear. I hope for you parents who are staying with your children for weeks, your child’s hospital provides laundry service to parents and families. I have washed laundry in the hospital more times than I care to recall, and it’s been a true blessing to have family laundry on every unit my kids have stayed.