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.

What Not to Say to a Mother When Her Child is Hospitalized

It’s hard to talk to someone when you don’t have a common experience. In these moments when you are trying to connect and say something comforting, people say things that are unintentionally hurtful. To help you avoid looking like a jack ass, I present to you a list of things not to say to a mother when her child is in the hospital.

  • Do not tell her about someone who made sure her child had a family member bedside the entire stay. Every hospital stay is different. Different families have different resources and different needs. What works for one family is not necessarily going to work for another family. And God help you if you have said this to someone who is not able to be bedside at all times. It feels like an attack on her parenting.Instead, tell her you would be happy to come to the hospital if she ever needs a break, or that you would be happy to watch her other children so she can spend time at the hospital with her child.

    I have been both the mother who was there all the time, and I’ve been the mother who was doing her best to be in all the places at once, knowing she was disappointing all of her children.

  • Do not tell her she will sleep better if she goes home and sleeps in her own bed. Will her own bed be more comfortable that whatever she is sleeping on in the hospital? Yes! Sleep couches and sleep chairs are not ideal. Hospital furniture is made for function, not comfort. Will this mother sleep more than a few hours at home if she has left her child at the hospital? Probably not. If she goes home, her mind will still be at the hospital. She will wonder what is happening. She will wonder if her child is feeling alone and scared. She will wonder how soon her child will get help if something happens while she isn’t there.Bottom line, while her child is hospitalized, she will not sleep well regardless of where this sleep takes place. Please don’t presume to know what is best for her.

    If you really want to help her sleep better, bring her an air mattress or a foam roll. You can always offer to cover an evening shift at the hospital so she can go home. But leave it entirely up to her whether she takes you up on that offer. Likely her decision to stay or go will be based on her child’s current health and her child’s age.

    I would likely take you up on this offer if my 10-year-old were in the hospital. But if it’s my 3-year-old, it’s pretty safe to assume I’m not leaving. If my child is in critical condition, regardless of age, I also will not leave.

  • Do not tell her she needs to take care of her self. She doesn’t want to hear that she can’t fill others’ cups unless she fills her own. She doesn’t want to hear that self care is important. She knows this is important in the grand scheme of things, but leaving the hospital isn’t like skipping a PTA meeting for a bubble bath and a glass of wine. She is running on fumes, and lets face facts, she isn’t going to take a time out unless she absolutely needs it.You can offer to be there for her. You can offer to bring her some self care (nail polish, a good book, real coffee, etc). And you can always offer to be there if she wants to leave for some self care. Just let it be her decision.

    For me, hospital self care has been a bottle of nail polish for a post bedtime mani-pedi. It has been walking a few blocks for real coffee while my child naps and doesn’t know I’ve been gone.

  • Do not give her any advice about her situation unless she asked for it. Advice from people, especially those who haven’t walked in your shoes will always come off wrong. Advice from people who have been in your shoes may or may not be helpful, but in the very least it doesn’t feel dismissive of your experience.Basically, it’s OK not to have anything to contribute to a conversation. It’s OK to admit that you don’t know what to say or how to react, and that you have no idea what you’d do in her situation.If you have gone through a similar experience with one of your children, you may offer up some insight, but you really are going to need to exercise your best judgement on whether what you are about to offer will actually help her. Probably the best approach is to offer a nugget of information to let her know you had a similar experience, but then let her come to you.

    The very best thing you can do for a mother whose child has been hospitalized is to just be there, with no agenda, no expectations, and let her feel what she is feeling in the moment.

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.

Shh…I Actually Like Our Elf

Christmas is by far my favorite holiday. It’s this purely magical time. Of course it’s magical for kids, but I seem to have never lost my love of or excitement for Christmas.

Like most families, we hopped on the Elf on the Shelf train. We have a festive, sometimes mischievous, elf named Ginger. She comes to our house every year the day after Thanksgiving.

Our elf usually brings something with her, for the kids, to kick off the season. Her past gifts have included books, movies, Christmas socks, Christmas shirts, and Christmas jammies. Not all of these things every year. Maybe just one thing. This year she brought coordinating Christmas jammies (that she bought on super sale) and a movie (that she bought early last year and then forgot about when Thanksgiving rolled around). Basically she brings them something they can enjoy the whole season.

Unlike most other moms on the internet, I actually like our elf. And I’m willing to admit it. That’s a bonus point for me. Of course I do hate when I forget to move the elf. That panic every parent gets at 6 a.m., when she suddenly wakes up and realized the elf is exactly where it was the day before and her children are no longer deeply asleep. Been there. Done that. More than once. It certainly will happen again this year. This year our elf has been consistently relocating at 3 a.m.

Despite the occasional panic, I still love our elf. My children are filled with pure excitement beginning a day or two before her return. She makes Christmas magic real for them. She is their direct link to Santa.

Good Points

Every morning there is excitement about finding Ginger. Where will she be? What will she be doing? Some mornings they even work as a team to divide and conquer. A system of, “you check the living room and I’ll check the kitchen.”

Our elf can make my job a little easier. She has nearly eliminated the need to “call Santa.” My children are required to self report bad behavior to Ginger. She then decides what to do with the information. On the flip side, they can’t wait to tell Ginger when they have done something good. I will make comments all season to remind them Ginger is listening and to estimate she is going to be very busy reporting all their fighting to Santa. But as a total, it’s pretty light lifting on the parenting front when she is around.

Not Great Points
I admit, it’s a struggle to figure out new spots for Ginger. Not that she does something new every visit. There are some spots she uses every single year. Heck, some years it’s hard enough just to make sure she doesn’t duplicate any of current year’s spots. It also is extra challenging the years we have toddlers who don’t know not to touch the elf. When all the spots have to be out of reach, creativity is limited.

At least I’m not an extra mom. That would be overwhelming for me. Occasionally, Ginger does something straight out of a Pinterest board. But most days she is pretty basic and hanging around. If I felt the need to be a super Pinterest-y mom, I think my affection toward our elf would have waned by now.

Final Ruling, the Elf is Cool
In mom circles, as the elf bashing starts, I will take a step back. It’s not that I won’t admit I like our elf, it’s more I don’t want to be the odd mom out.

Our elf tradition began when my oldest child was 3, she’s now 10. So this is our seventh season with Ginger. And I’ll possibly have another eight or nine years with her—my kids are 10, 6, 3 and 3. I do look forward to the days I might have elf helpers. I hope my oldest might want to help with elf relocation when she is a teen. Either way, I still have not hit the halfway point of elf visits at my house.

It’s fine. I secretly predict I will continue to move the elf when none of my children believe. I love how she enhances the season for my brood. Although, if I’m being honest, I am surprised my 10-year-old isn’t more skeptical. She has started asking more questions about how things work. This is at least the second Christmas season I’ve entered thinking this will be the last year she believes. But for now, all of the children believe in the magic of Christmas, and to me, that is priceless. I know Ginger is a big part of that.

Happy Holidays…

Happy holidays to the mom who:

Is spending it in her child’s hospital room
I know you wouldn’t be anywhere but your child’s hospital room today. I also know you wish this was a “normal” year and you could be with friends and family today. I know you are missing out on traditions, memories, and laughter that you desperately need today. To be honest, you probably couldn’t care less if you skipped all holidays this year.

Is hosting this year
I know you have spent the past few weeks shopping, planning, and cleaning as though the queen is visiting. I’m sure you will spend today more focused on the cooking rather than the gathering happening around you. I’m sure you wish someone would just hang out with you in the kitchen.

Is spending it away from her children
I don’t know what has separated you from your children today. Shared custody? Work? Illness? Whatever it is, I know you are missing your kids today. I know holidays don’t feel complete without them here. You might even prefer to skip the holiday season all together. Or maybe you plan to celebrate tomorrow, next week, or next month.

Is spending it with immediate family
Maybe this is what you prefer. Maybe you wish you could be surrounded by your extended family today. Separated by long distances. Separated by limited travel time and limited travel funds. Separated because no one has room for 60 people to gather.

Is spending most of the day breastfeeding a baby, or pumping round the clock
Whether you are tucked away in a bedroom or out in the open, I know today you will live by the schedule tht rules your life every other day. I know you may have a family member or two who will question you.

  • Again!?!
  • Didn’t he just eat?
  • Do you have to do that here?
  • When are you going to wean?

I hope your eyes don’t roll hard enough to give you a headache today. If you opt to be tucked away for any number of reasons, like an easily distracted baby, I know being tucked away also can be a much needed break for you.

Is dreading the unsolicited parenting advice
Your family means well. And you love them. But some of them haven’t raised small children in multiple decades. Some of them have selective parenting memories. Some of them have never raised a child like yours. Shockingly, children like adults, have different personalities and a one size fits all approach isn’t necessarily effective.

If you’re raising a child with special needs, there is an extra layer that goes with this unsolicited advice, (and sometimes medical advice). The layer of gross misunderstanding.

  • Why is she acting that way?
  • Don’t you think you’re coddling him?
  • We never had this problem with you.
  • I don’t think he gets enough therapy.
  • She must be tired.
  • Don’t put him down, I’ll hold him.

They mean well. Isn’t that what we always tell ourselves before we try to brush aside their advice and steer the conversation in a different direction?

However you observe the holidays this year; whatever your struggles; wherever you’re spending this season; I see you. It’s quite possible I’ve been you. Or I am you.

Happy holidays.

Yikes! I wasn’t Ready for the Sass

In case you didn’t know, I’m raising a 10-year-old daughter. She’s at an age when she has some more mature interests. She wants to do spa days. She craves “girl time.” Occasionally, she seems to really enjoy my company.

Sounds like I have hit the perfect age of parenting, at least with this one (because I still have toddlers in my house—or are 3-year-olds preschoolers?).

It is a good place. I love the freedom that 10 gives. She can do her homework with minimal supervision. When she and her friends play outside I don’t worry about anyone wandering in front of a moving car. She wants to learn how to do more things for herself, and I want to oster this budding independence. However, there is an ugly stage that is lurking in the background.

The Age of Stupid

Looming in the depths of my 10-year-old’s inner self, is a demonic version of herself. And I know this inner demon child will be running the show in the next few years.

Don’t confuse this demon with one you may have seen in the toddler years. This is not like a 3-year-old who needs a good exorcism when she is throwing things and screaming because she is overwhelmed or tired. No! This demon child is the teenager forming to take over my sweet girl who, I swear was only a baby yesterday.

This is the version of her who rolls her eyes at me because I am stupid.

I know, I was surprised too. All these years I thought I was mildly intelligent. Turns out, I am stupid, and my 10-year-old knows so much more than I do.

While checking her homework, if I tell her she needs to correct a math problem, after she rolls her eyes, she will “teach” me how they have done it in class to prove that she is right and I am old and stupid. Granted, I’m not a master of the new approaches to math. She did in fact need to teach me grid multiplication, or whatever it’s called. Thing is, when I tell her to correct something, it’s not that it’s in an unfamiliar format, it’s that the answer is WRONG. I don’t care how you multiply your numbers—grid, stacked, or calculator—the answers should all match. That is a key component of math. It doesn’t matter which method or approach you use, everyone arrives at the same answer.

If I tell her she isn’t actually done picking up her room, after the immediate eye roll (because I’m stupid), I get a very loaded, “what else needs to be done?” Clearly the socks on her floor and the sweater that is halfway under her bed belong exactly where they are. The assortment of clothes, books, and dolls on her bed, they belong there. Duh! It does not matter that if that sweater remains where it is, it will be swallowed up by the abyss that is the space under her bed and won’t resurface until it’s two sizes too small. It also doesn’t matter that the charger she can’t find is in fact on her bed in the pile of stuff that is “exactly where it belongs.” Now I’m rolling my eyes.

Thankfully I’m not always stupid. At 10, she is caught somewhere between the child I know and the teen she’ll become. This means I still have the ability to impress her with something I know or something I can do. If I experiment and make a new icing and it’s tasty, I am a genius. Although I should probably pause to note her level of shock when I succeed, I choose to ignore it. Of course when I take a chance and something doesn’t turn out the way I planned, she’s quick to tell me what I did wrong or what I should have done. At least I impress her more often than not.

I Was Her

I know 10 is only the beginning of what lies ahead. Puberty is on the horizon.

I know to her it seems like I’m out of touch because I’m old, but I too was once a 10-year-old girl. She’s caught between two worlds—one filled with toys and childhood simplicity, and one filled with complex emotions and social hierarchy. I vaguely remember what it was like to start finding my place in the world. To feel like I was no longer a little kid, but to know I was not yet an adult. To be honest, I’m still not sure I have found my place in the world, and I often need to remind myself I am an adult.

I knew the age of sass was coming for her. I just wasn’t prepared for it to hit as early as it did. That’s a lie, deep down I knew it would appear in the later elementary years. I just wasn’t ready for it. I don’t know that I ever would have been ready for it. I don’t know that I’ll be ready for it when the next child hits this stage, or the last child for that matter.

I’m 5 percent sure I wasn’t prepared simply because she still is my baby. But I’m 95 percent sure I wasn’t ready because I know what still is in-store for me. It’s not that I have a crystal ball, but I know how terrible I was at her age. I also know it only gets worse before it gets better. So while life with a daughter who is 10 is sprinkled with sass and hard eye rolls, life with a teen daughter is bound to contain exponentially more sass and too many eye rolls to count.

I’m not ready. I hope my own mother finds my situation comical. I know I deserve every ounce of sass that is headed my way (why was I so mouthy and sassy?!?). I’m sure I will survive the tumultuous teen years. My mother survived me. Her mother survived her. I’m just not looking forward to being stupid for so many years.

Premature Infants: Elephants in the Delivery Room

Every year, Nov. 17, is World Prematurity Day. The goal of this day is to bring awareness to preterm birth and the affects on families. So let’s talk about what it is like to deliver too soon. I won’t begin to speak for all parents of infants born too early. There are too many variables. I am just one mother. This is just my perspective.

When I gave birth to my twins at 24 weeks and 6 days, I was not prepared for the life I was about to live. Before my twins, I had given birth twice to beautiful full-term infants who tipped the scales at just under 9 pounds each—a daughter in 2009 who weighed 8 pounds, 14 ounces, and a son in 2013 who weighed 8 pounds, 15 ounces. It had never occurred to me that my third and fourth babies would be born too soon. I was cocky even when I was in preterm labor, because my previous pregnancies had gone so smoothly. Clearly, I WAS WRONG!

One of the first things I learned after my twins were born is how much everything hurts when your babies are born traumatically and whisked off to the neonatal intensive care unit (NICU). I’m not talking about physical pain that could accompany any delivery. I’m talking about the raw emotional pain I was in then, and continue to be in more than three years later.
Labor and Delivery isn’t Set Up for Parents of Preemies
The staff working in labor and delivery aren’t prepared for micropreemie infants. That’s what my twins were. Born at 24+6 weeks, weighing 1 pound, 11 ounces and 1 pound, 15 ounces, they were emotionally hard on the staff who attended my delivery. The thing is, it was emotionally hard on me too. I’ll even go far enough to argue it was harder on me than it was on them.

There are two things I vividly remember immediately following my twins’ birth. The first was the way the labor and delivery nurses comforted the pregnant resident who delivered my twins. I had just delivered baby B. Not a sound from him could be heard. The NICU nurses who attended the delivery were focused on him and the labor and delivery nurses were focused on the resident who began crying. My babies were so small, so early, so fragile that the resident in charge of the delivery was crying. Since she was visibly pregnant, it was hard for her to witness. The nurses consoled her. They told her it would be OK. Her baby would be fine. She should take a few moments to react to the trauma she just witnessed and process the situation.

Do you want to know what didn’t happen? No one talked to me. I had just delivered not one, but two babies more than 15 weeks before my due date. I had spent the last 12 hours in labor trying to keep those babies inside my body a little longer. I had just reached the point where we thought my labor was successfully stalled when my water broke and I was rushed into a delivery suite without time for any medications. I had just been told not to deliver the placentas and had an OB-GYN elbow-deep in my uterus to retrieve said placentas so they could be sent to the lab for further examination. Did I mention there was no time for pain medication?

No one talked to me. Everyone comforted the pregnant resident who was upset by the ordeal I had just lived. But no one talked to me.

The second thing I remember so vividly is recovering from the delivery in unit’s post-anesthesia care unit. Still, no one talked to me. A nurse sat with her back to me charting. She would check my vitals, but she didn’t really talk to me.

The first 30 minutes of my recovery I was alone with a nurse in a cold, bright, white recovery room. I had no idea if the babies I had just delivered were alive, I only knew they had been taken to the NICU. After that first half hour another woman was wheeled into the recovery room. It was loud. She had just had a c-section. She sounded overwhelmed. The nurse with her reassured her that she had done great. Her husband walked into recovery just a few minutes later. You could feel their excitement about having just become parents. They talked loudly. There was laughter. A little while later, a nurse brought in a baby wrapped in a blanket. There were gasps and cheers for this perfect little being who had begun to cry. While a celebration of the start of a new life was taking place on the other side of a curtain, I remained alone. Still no one talked to me. I spent most of my time in recovery sure twin B had died, trying to convince myself his death was for the best because I wasn’t equipped to raise four children.

After I had stayed in the recovery room for the prescribed amount of time, I was taken to a postpartum room. I was alone. I don’t remember for how long. I do know I could hear the newborn babies in neighboring rooms crying. Eventually someone took me to the NICU so I could meet my twins. I’m almost positive it was my husband who took me to the NICU.

I don’t think labor and delivery nurses knew what to say to me. They didn’t know how to interact with someone in my shoes. Thankfully NICU nurses were well equipped to handle me. They explained the world of the NICU and everything that was happening. During the next six months, they talked to me and they comforted me.
Everything Stings
Three years later, everything still hurts. Like grief, the pain is there, but it changes over time. The things that initially stung are now dull, but new things sting.

In the beginning it stung when people didn’t acknowledge I had just given birth. It stung when my boss had no expression of concern or wishes of congratulations. I’m sure people didn’t know what to say. It stung when I was discharged from the hospital and my babies remained, fighting for their next breath. It stung to see brand new babies and their parents being discharged home together with balloons, smiles, and well wishes from nurses. It stung when I went to my postpartum check up and my OB-GYN spent the visit trying to diagnose me with postpartum depression because I wasn’t my happy normal self, instead of hearing one of my twins had just been transferred to another hospital so he could have brain surgery. It wasn’t depression, it was worry and grief.

Today, the things that sting are the casual comments made by people who have no idea I have delivered early. It stings to hear (or read) about someone who hopes doctors take this baby early because pregnancy is “miserable.” I would prefer to vomit every day for 40 weeks and be kicked in the cervix by an elephant than to sit next to a plastic box every day for months while I have to ask to hold my baby, and some days be told no. It stings to read something that is supposed to reassure new parents but is wildly insensitive to those who have delivered early, or to those who delivered a very sick baby.

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Photo source: Facebook, Mommies With Heart

It seems, at least according to something like this, there is no greater sorrow than a deafening silence after your baby is born. That feeling of panic and desperation, not knowing if things will be OK, wondering if everything you just experienced was worth it.
Bottom Line
I get that this is my issue. I don’t expect people who are uncomfortably pregnant to stop complaining. I don’t want people to stop trying to reassure others that their birthing experiences, regardless of whether it followed a desired birth plan was indeed worth it. Yes, some things still are raw for me. But I don’t think life needs to contain more trigger warnings than it already does.

Here’s what I do want. Take World Prematurity Day as an opportunity to learn something about babies who are born too soon. The March of Dimes is a great place to start. Spoiler alert: premature infants aren’t tiny versions of full term infants; they aren’t in the NICU just to get bigger. If someone you know delivers early, reach out. It’s OK to say:

I also want healthcare professionals working in labor and delivery to recognize the pain that can accompany preterm birth. Learn how to better support parents who have just delivered preterm infants. Develop a better tool to screen for postpartum depression and post-traumatic stress disorder. But most importantly, don’t ignore us just because our experiences make you uncomfortable.