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20 Things Parents of Critically Ill Children Want You To Know

20 Things Parents of Critically Ill Children Want You To Know

My husband and I are still married. That’s a mighty bold accomplishment, so we’re told, given the fact that both of our two children are critically ill and have been since birth. For the most part, you wouldn’t know it by passing them on the street. They have what most people consider not to be a disease. They were born with major congenital heart defects, which, collectively, is often referred to as a disease. Congenital heart defects/disease (CHDs) is the leading cause of birth defect-associated illnesses and death in infants, so prevalent, in fact, that 1% of live births in the United States are affected by CHDs every year. This equates to nearly one in one hundred babies. It seems both my children won the genetic lottery, making each of them one in one hundred.

It’s not easy to be a parent. Period. Just ask one. We’ll share stories until the cows come home, and leave again in the morning. However, being the parent of a critically ill child is the most difficult thing I’ve ever done (and am still doing.) I want to ask why? I want to say, “It’s not fair.” I want to get mad. But none of that changes or fixes anything, because it is what it is.

Yes, we have sick children. They’re still too young to understand the unfairness of life. Being their parents, we feel it’s our responsibility to make their world as awesome as possible. We’re not heroes; we’re just doing our jobs. You’d do the same if it were your child. I know it’s difficult to walk in our shoes, however, here are some things about our lives we want you, parents of “healthy” kids, to know.

1. We hope you realize how lucky you are

Look, we don’t want to keep telling you, but, damn, you’re lucky to have healthy children.

2. We’re not judging you or your parenting skills

Okay, maybe sometimes. Like when you’re on your phone… the WHOLE time you’re at the park with your child. There are times when our kids can’t make it outside because they’re too sick. We’d be thrilled to play at the park with our children. In reality, we know everyone’s just trying to do the best they can. Or at least we hope that.

3. We promise we’re not trying to make you feel guilty

That’s probably why we don’t share certain information with you. We’re not trying to one-up you or make you feel weird. We’re not the moral police, trying to teach you lessons about life. We might give a reality check now and then, but, hey, that’s what social media is for. (i.e. #1 above)

4. We don’t think we’re different from other parents

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    Although we look like we have a lot more on our plates (like staying up all night – all the time, shoving tubes up noses and down throats to feed, giving injections when we’re not medical professionals, living in hospitals, etc. etc.) we don’t think we’re different or better parents. You would do all these things for your child if you had to, and we know this.

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    5. (But…) We do get aggravated when you complain about something minor or silly

    There’s no sugar coating this fact: It’s hard to sit back and be silent when you complain about something in your life that would be no big deal in our world. Again, we’re not judging you or your life, it’s just that when you’ve seen/done what we’ve seen/done, the rest is cake. We get it, though, because it’s human nature to complain. It’s just sometimes we want to stop you in the middle of your sentence to give you a quick priority check.

    We don’t usually do this because we’d lose friends fast. But, please, please, please, the next time you’re complaining about something your child did or didn’t do, try to remember there’s someone out there that would give anything to have a child who’s healthy enough to be a little annoying. (Okay, so that’s a small guilt trip.)

    6. We’re not heroes

    We just seem like it because we appear to live in hell and, yet, we still manage to smile. And show up showered, dressed and on-time, at least a few times a week. Okay, so some of us have saved our children’s lives. Yes, it’s true. We’ve done CPR on our son more than once (when he was kind of sort of not technically alive anymore.) We sat next to our daughter when she “crashed” in the hospital. We’ve managed keep a child with only a 50% chance of surviving to age five alive for ten years (and she’s still doing awesome.) Parents of children with chronic illnesses or who are critically/terminally ill do what they do, not because they’re heroes, but because they’re parents. You’d do it, too, if you had to.

    7. Our children are the true heroes

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      We’re not heroes, our children are. Critically ill children are some of the bravest, strongest and most resilient people I know. They’re continually and continuously beaten down by their illnesses, but they refuse to lose the fight. They get up, brush themselves off and keep going. These children can handle surgeries and needles with confidence. They can swallow humongous pills  and nasty-tasting medicine like nobody’s business. They put up a good front and, for the most part, they get through the annoying routine stuff – regular doctor appointments, poking, prodding, etc. – with a smile. Or only a few tears.

      I’ve NEVER seen anyone as resilient as my little 10-year-old girl. She can smile through the worst pain, even when she’s injecting her medication all by herself into her tiny leg (with a one-inch needle.)

      8. We don’t like to compare illnesses/injuries

      People have a terrible habit of comparing their child’s one-time illness or injury to our child’s ordeal. No, your child’s two-day stay in the hospital for slight dehydration caused by the flu couldn’t touch the time my daughter was in the hospital, fighting for her life, because her heart was sick from that same damn flu, BUT, it doesn’t change the fact that your child was in the hospital and you were scared. Your child was sick and you couldn’t help her and that feeling is the same no matter what, whether it’s a broken bone or a broken heart.

      There’s no need to apologize for the lack of tragedy in your situation. We hear this, “Well, it’s nothing like your situation” or “It was really minor compared to your situation” ALL the time. No, it’s not like our situation, thank goodness. But it still sucks when your child is sick or hurt, no matter how minor and we feel bad.  (And to my fellow parents of critically ill children, you shouldn’t be comparing illnesses. NO parent likes seeing their child sick or hurt. You, out of everyone, should be the most empathizing.)

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      9. We have a love/hate relationship with social media.

      Social media is a blessing and a curse for us. On the one hand, we love being able to share our good times, our victories (and we have some weird victories), and health news. We also find it important to share when something bad has happened. It’s a fast way to inform people of a complication or a trip to the hospital. It’s also the best way for people to participate in the popular new methods of fundraising, like crowdfunding, which is done online. Believe it or not, we really enjoy seeing posts about your life and your children.

      On the other hand, it’s really difficult to see your posts because we’re seeing new homes, new furniture, new cars, perfect kids, healthy kids playing every sport, perfect vacations – you get the idea. We’re seeing life moving forward.

      10. We’re struggling financially

      This is a big one. Nobody understands this. If we had a nickel for every time we heard, “Don’t you have insurance?” YES! We have insurance. Good insurance. We also have a critically ill child who reaches the maximum coverage by March every year, who sees specialists, who’s on fifteen different medications (some of which aren’t covered), and so on. We miss more work than most people, which leads to layoffs, job loss (yes, they can let go of you – they’ll just give another reason), or serious decline in income.

      And before you even think it…this has nothing to do with the president or politics or healthcare policies. Our child is so sick, we’ll max out every plan, with or without Obamacare. In fact, we (parents of sick children) don’t even have the energy to talk healthcare to people who don’t have health issues in their families.

      We work hard and we don’t expect handouts, but there are lots of times when donations are literally life-saving.

      11. We’re happy your children are healthy

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        I promise we are. We may appear to be envious, and, at times, we are. We’d give anything to have a taste of the healthy life, but it ain’t happening. We still support your kids, cheer for your kids and love your kids, and we feel sad when they get hurt or sick (even with that nasty flu that’s going around.)

        12. We have a different version of normal

        My husband and I learned long ago that “It is what it is”. We’ve tried to create a life for our family that is as happy, fun and as real as possible…within the parameters we’ve been given. Our kids are considered critically ill, but they have healthy friends and “hospital” friends. That’s just part of who they are. There’s no difference in their eyes. The hospital friends understand the bad days; the healthy friends, while they’re supportive of the bad days, they’re there on the good days, giving our children exactly what they need: normality. If such a thing exists.

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        13. We break down

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          You just don’t see it. We’re not trying to hide our emotions. It’s just we don’t often open the flood gates out in public. Raising very sick children is HARD. Watching your child go through so much, seeing them in pain, knowing they feel so sick and there’s nothing you can do to help them is one of the worst feelings a parent can have. We feel like failures as parents. All we can do is try our best to comfort them, but sometimes, not even our love helps. So, yes, once in a while, we lose it. Think: The Fault In Our Stars type of sob session. At least once a month for most moms I know. It’s just so damn difficult to be so damn incapable of mothering.

          14. Yes, we probably need help, and, no, we probably won’t ask

          Forget the financials for a second, even though most of us are barely surviving because we’re so overwhelmed with medical and pharmacy bills.

          We’re trying to keep our critically ill child well (maybe even alive), while doing all the normal parent stuff. We’ll hold babies and oxygen tanks while cooking dinner. We’re folding laundry while we’re making sure the tube in the nose, which leads to the stomach, isn’t kinked so the formula (because our baby can’t be breastfed) will make it into the baby’s tummy. We’ll have one child at home for any  number of days, while the other is in the hospital. There are always other things, life-altering things, going on at the same time.

          Everything you’re doing that is typical for your family is a hundred times more difficult when you have a critically ill child. I know, I know. Parents of healthy kids might roll their eyes at this one, thinking we’re whining or complaining. We’re not. It’s just a fact. While your kid was playing soccer last night, ours was having issues breathing.

          Do we need help? Totally. Cleaning the house, doing the laundry, cooking… all those things take a back seat more often than not. You have no idea how freaking awesome it is when someone brings dinner or offers up a cleaning service.

          15. We’re scared that our children will die

          Every single day we have to swallow that fear and go on with our day. And we work hard to never, ever let our kids know about that fear.

          16. Some of us are so affected by our situation we actually have PTSD

          (Post traumatic stress disorder) Yes, having a really sick kiddo is THAT hard.

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          17. We want to be social

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            We’d like to go out with you. We’d like to go to parties or dinner or concerts or whatever. Anything with other adults. But…our children are, well, you know. And we can’t get a babysitter. Okay, we won’t get a babysitter. Are you kidding me? How on earth can we leave our child – who requires life-saving medications, who may stop breathing at any point, requiring CPR, who has special health needs – with anyone but us? We can’t. So we don’t. Ever.

            We just don’t go out. Thanks for asking, though.

            18. School is a nightmare

            Emergency medical plans, medication lists, two hundred and sixty seven hours spent filling out forms, faxing back and forth with doctor’s offices, making sure the schools have everything they need, prepping the teachers, checking the IEPs, more forms (PE!!). And the field trips. OMG.

            Can’t we just have one normal day like you guys where we just go through the loop and drop off?

            19. Truth? We HATE the perfect attendance awards at school

            Hate! With a passion. Because you know what that means? It means someone sent their child to school sick – at least once. And that pisses us off to no end. Look, we don’t want to pull the “we’re special” card, but, well, we are. Our children have crappy immune systems. Hell, a common cold can send my daughter to the hospital with a life-threatening case of pneumonia within hours. We don’t want to keep our children in a bubble because that’s not real life, however, we don’t like to purposely send them into a cesspool of germs either.

            Please! We’re begging you. No matter what the reason, if your child is sick, keep him/her home. If not for our children, do it for the other children and the teacher. It’s just not fair. I’m happy to print a certificate at the end of the year for good parenting.

            20. It’s all about perspective

            Life is very difficult with critically ill children. There’s no vacation from the illness. As a parent, there’s no break from the sadness we feel as we witness our child sick or in pain. We may feel like things will never get better, but it’s all about perspective. Most of us learned long ago to change our perspective. This is our life. We’re blessed. We’re resilient. Our children may have an illness, but they’re still rock stars in our eyes. They will overcome many challenges. Not all of them, though. And that’s perfectly fine with us. They’ve already overcome their biggest challenge just by being here with us.

            photo credit: Pinterest

            Featured photo credit: Christiaan Triebert via flickr.com

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            Missy Mitchell

            Author, Artist, Advocate

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            Published on May 4, 2021

            How To Spot Fake People (And Ways To Deal With Them)

            How To Spot Fake People (And Ways To Deal With Them)

            They say we are the average of the five persons we spend the most time with. For a minute, consider the people around you. Are they truly who your “tribe” should be or who you aspire to become in the future? Are they really genuine people who want to see you succeed? Or are they fake people who don’t really want to see you happy?

            In this article, I’ll review why it is important to surround yourself with genuine individuals—the ones who care, bring something to our table, and first and foremost, who leave all fakeness behind.

            How to Spot Fake People?

            When you’ve been working in the helping professions for a while, spotting fake people gets a bit easier. There are some very clear signs that the person you are looking at is hiding something, acting somehow, or simply wanting to get somewhere. Most often, there is a secondary gain—perhaps attention, sympathy, or even a promotion.

            Whatever it is, you’re better off working their true agenda and staying the hell away. Here are some things you should look out for to help spot fake people.

            1. Full of Themselves

            Fake people like to show off. They love looking at themselves in the mirror. They collect photos and videos of every single achievement they had and every part of their body and claim to be the “best at what they do.”

            Most of these people are actually not that good in real life. But they act like they are and ensure that they appear better than the next person. The issue for you is that you may find yourself always feeling “beneath” them and irritated at their constant need to be in the spotlight.

            2. Murky in Expressing Their Emotions

            Have you ever tried having a deep and meaningful conversation with a fake person? It’s almost impossible. It’s because they have limited emotional intelligence and don’t know how they truly feel deep down—and partly because they don’t want to have their true emotions exposed, no matter how normal these might be.

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            It’s much harder to say “I’m the best at what I do” while simultaneously sharing “average” emotions with “equal” people.

            3. Zero Self-Reflection

            To grow, we must accept feedback from others. We must be open to our strengths and to our weaknesses. We must accept that we all come in different shapes and can always improve.

            Self-reflection requires us to think, forgive, admit fault, and learn from our mistakes. But to do that, we have to be able to adopt a level of genuineness and depth that fake people don’t routinely have. A fake person generally never apologizes, but when they do, it is often followed with a “but” in the next breath.

            4. Unrealistic Perceptions

            Fake people most often have an unrealistic perception of the world—things that they want to portray to others (pseudo achievements, materialistic gains, or a made-up sense of happiness) or simply how they genuinely regard life outside themselves.

            A lot of fake people hide pain, shame, and other underlying reasons in their behavior. This could explain why they can’t be authentic and/or have difficulties seeing their environment for the way it objectively is (both good and bad).

            5. Love Attention

            As I mentioned earlier, the biggest sign that something isn’t quite right with someone’s behavior can be established by how much they love attention. Are you being interrupted every time you speak by someone who wants to make sure that the spotlight gets reverted back to them? Is the focus always on them, no matter the topic? If yes, you’re probably dealing with a fake person.

            6. People Pleaser

            Appreciation feels nice but having everyone like you is even better. While it is completely unrealistic for most people to please everyone all the time, fake people seem to always say yes in pursuit of constant approval.

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            Now, this is a problem for two reasons. Firstly, these people are simply saying yes to things for their own satisfaction. Secondly, they often end up changing their minds or retracting their offer for one reason or another (“I would have loved to, but my grandmother suddenly fell ill.”), leaving you in the lurch for the 100th time this year.

            7. Sarcasm and Cynicism

            Behind the chronic pasted smile, fake people are well known for brewing resentment, jealousy, or anger. This is because, behind the postcard life, they are often unhappy. Sarcasm and cynicism are well known to act as a defense mechanism, sometimes even a diversion—anything so they can remain feeling on top of the world, whether it is through boosting themselves or bringing people down.

            8. Crappy friend

            Fake people are bad friends. They don’t listen to you, your feelings, and whatever news you might have to share. In fact, you might find yourself migrating away from them when you have exciting or bad news to share, knowing that it will always end up one way—their way. In addition, you might find that they’re not available when you truly need them or worse, cancel plans at the last minute.

            It’s not unusual to hear that a fake person talks constantly behind people’s backs. Let’s be honest, if they do it to others, they’re doing it to you too. If your “friend” makes you feel bad constantly, trust me, they’re not achieving their purpose, and they’re simply not a good person to have around.

            The sooner you learn to spot these fake people, the sooner you can meet meaningful individuals again.

            How to Cope With Fake People Moving Forward?

            It is important to remind yourself that you deserve more than what you’re getting. You are worthy, valuable, precious, and just as important as the next person.

            There are many ways to manage fake people. Here are some tips on how to deal with them.

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            1. Boundaries

            Keep your boundaries very clear. As explained in the book Unlock Your Resilience, boundaries are what keep you sane when the world tries to suffocate you. When fake people become emotional vampires, make sure to keep your distances, limit contact, and simply replace them with more valuable interactions.

            2. Don’t Take Their Behavior Personally

            Sadly, they most likely have behaved this way before they knew you and will continue much longer after you have moved on. It isn’t about you. It is about their inner need to meet a void that you are not responsible for. And in all honesty, unless you are a trained professional, you are unlikely to improve it anyway.

            3. Be Upfront and Honest About How You Feel

            If your “friend” has been hurtful or engaged in behaviors you struggle with, let them know—nicely, firmly, however you want, but let them know that they are affecting you. If it works, great. If it doesn’t, you’ll feel better and when you’re ready to move on, you’ll know you tried to reach out. Your conscience is clear.

            4. Ask for Advice

            If you’re unsure about what you’re seeing or feeling, ask for advice. Perhaps a relative, a good friend, or a colleague might have some input as to whether you are overreacting or seeing some genuine concerns.

            Now, don’t confuse asking for advice with gossiping behind the fake person’s back because, in the end, you don’t want to stoop down to their level. However, a little reminder as to how to stay on your own wellness track can never hurt.

            5. Dig Deeper

            Now, this one, I offer with caution. If you are emotionally strong, up to it, guaranteed you won’t get sucked into it, and have the skills to manage, perhaps you could dig into the reasons a fake person is acting the way they do.

            Have they suffered recent trauma? Have they been rejected all their lives? Is their self-esteem so low that they must resort to making themselves feel good in any way they can? Sometimes, having an understanding of a person’s behavior can help in processing it.

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            6. Practice Self-Care!

            Clearly, putting some distance between the fake person and yourself is probably the way to go. However, sometimes, it takes time to get there. In the meantime, make sure to practice self-care, be gentle with yourself, and compensate with lots of positives!

            Self-care can be as simple as taking a hot shower after talking to them or declining an invitation when you’re not feeling up to the challenge.

            Spotting fake people isn’t too hard. They generally glow with wanna-be vibes. However, most often, there are reasons as to why they are like this. Calling their behavior might be the first step. Providing them with support might be the second. But if these don’t work, it’s time to stay away and surround yourself with the positivity that you deserve.

            Final Thoughts

            Remember that life is a rollercoaster. It has good moments, tough moments, and moments you wouldn’t change for the world. So, look around and make sure that you take the time to choose the right people to share it all with.

            We are the average of the five people we spend the most time with, so take a good look around and choose wisely!

            More Tips on Dealing With Fake People

            Featured photo credit: Priscilla Du Preez via unsplash.com

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