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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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            Last Updated on February 11, 2021

            Easily Misunderstood by Others? 6 Barriers You Should Overcome to Make Communication Less Frustrating

            Easily Misunderstood by Others? 6 Barriers You Should Overcome to Make Communication Less Frustrating

            How often have you said something simple, only to have the person who you said this to misunderstand it or twist the meaning completely around? Nodding your head in affirmative? Then this means that you are being unclear in your communication.

            Communication should be simple, right? It’s all about two people or more talking and explaining something to the other. The problem lies in the talking itself, somehow we end up being unclear, and our words, attitude or even the way of talking becomes a barrier in communication, most of the times unknowingly. We give you six common barriers to communication, and how to get past them; for you to actually say what you mean, and or the other person to understand it as well…

            The 6 Walls You Need to Break Down to Make Communication Effective

            Think about it this way, a simple phrase like “what do you mean” can be said in many different ways and each different way would end up “communicating” something else entirely. Scream it at the other person, and the perception would be anger. Whisper this is someone’s ear and others may take it as if you were plotting something. Say it in another language, and no one gets what you mean at all, if they don’t speak it… This is what we mean when we say that talking or saying something that’s clear in your head, many not mean that you have successfully communicated it across to your intended audience – thus what you say and how, where and why you said it – at times become barriers to communication.[1]

            Perceptual Barrier

            The moment you say something in a confrontational, sarcastic, angry or emotional tone, you have set up perceptual barriers to communication. The other person or people to whom you are trying to communicate your point get the message that you are disinterested in what you are saying and sort of turn a deaf ear. In effect, you are yelling your point across to person who might as well be deaf![2]

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            The problem: When you have a tone that’s not particularly positive, a body language that denotes your own disinterest in the situation and let your own stereotypes and misgivings enter the conversation via the way you talk and gesture, the other person perceives what you saying an entirely different manner than say if you said the same while smiling and catching their gaze.

            The solution: Start the conversation on a positive note, and don’t let what you think color your tone, gestures of body language. Maintain eye contact with your audience, and smile openly and wholeheartedly…

            Attitudinal Barrier

            Some people, if you would excuse the language, are simply badass and in general are unable to form relationships or even a common point of communication with others, due to their habit of thinking to highly or too lowly of them. They basically have an attitude problem – since they hold themselves in high esteem, they are unable to form genuine lines of communication with anyone. The same is true if they think too little of themselves as well.[3]

            The problem: If anyone at work, or even in your family, tends to roam around with a superior air – anything they say is likely to be taken by you and the others with a pinch, or even a bag of salt. Simply because whenever they talk, the first thing to come out of it is their condescending attitude. And in case there’s someone with an inferiority complex, their incessant self-pity forms barriers to communication.

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            The solution: Use simple words and an encouraging smile to communicate effectively – and stick to constructive criticism, and not criticism because you are a perfectionist. If you see someone doing a good job, let them know, and disregard the thought that you could have done it better. It’s their job so measure them by industry standards and not your own.

            Language Barrier

            This is perhaps the commonest and the most inadvertent of barriers to communication. Using big words, too much of technical jargon or even using just the wrong language at the incorrect or inopportune time can lead to a loss or misinterpretation of communication. It may have sounded right in your head and to your ears as well, but if sounded gobbledygook to the others, the purpose is lost.

            The problem: Say you are trying to explain a process to the newbies and end up using every technical word and industry jargon that you knew – your communication has failed if the newbie understood zilch. You have to, without sounding patronizing, explain things to someone in the simplest language they understand instead of the most complex that you do.

            The solution: Simplify things for the other person to understand you, and understand it well. Think about it this way: if you are trying to explain something scientific to a child, you tone it down to their thinking capacity, without “dumbing” anything down in the process.[4]

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            Emotional Barrier

            Sometimes, we hesitate in opening our mouths, for fear of putting our foot in it! Other times, our emotional state is so fragile that we keep it and our lips zipped tightly together lest we explode. This is the time that our emotions become barriers to communication.[5]

            The problem: Say you had a fight at home and are on a slow boil, muttering, in your head, about the injustice of it all. At this time, you have to give someone a dressing down over their work performance. You are likely to transfer at least part of your angst to the conversation then, and talk about unfairness in general, leaving the other person stymied about what you actually meant!

            The solution: Remove your emotions and feelings to a personal space, and talk to the other person as you normally would. Treat any phobias or fears that you have and nip them in the bud so that they don’t become a problem. And remember, no one is perfect.

            Cultural Barrier

            Sometimes, being in an ever-shrinking world means that inadvertently, rules can make cultures clash and cultural clashes can turn into barriers to communication. The idea is to make your point across without hurting anyone’s cultural or religious sentiments.

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            The problem: There are so many ways culture clashes can happen during communication and with cultural clashes; it’s not always about ethnicity. A non-smoker may have problems with smokers taking breaks; an older boss may have issues with younger staff using the Internet too much.

            The solution: Communicate only what is necessary to get the point across – and eave your personal sentiments or feelings out of it. Try to be accommodative of the other’s viewpoint, and in case you still need to work it out, do it one to one, to avoid making a spectacle of the other person’s beliefs.[6]

            Gender Barrier

            Finally, it’s about Men from Mars and Women from Venus. Sometimes, men don’t understand women and women don’t get men – and this gender gap throws barriers in communication. Women tend to take conflict to their graves, literally, while men can move on instantly. Women rely on intuition, men on logic – so inherently, gender becomes a big block in successful communication.[7]

            The problem: A male boss may inadvertently rub his female subordinates the wrong way with anti-feminism innuendoes, or even have problems with women taking too many family leaves. Similarly, women sometimes let their emotions get the better of them, something a male audience can’t relate to.

            The solution: Talk to people like people – don’t think or classify them into genders and then talk accordingly. Don’t make comments or innuendos that are gender biased – you don’t have to come across as an MCP or as a bra-burning feminist either. Keep gender out of it.

            And remember, the key to successful communication is simply being open, making eye contact and smiling intermittently. The battle is usually half won when you say what you mean in simple, straightforward words and keep your emotions out of it.

            Reference

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