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20 Things Parents of Critically Ill Children Want You To Know

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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.

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            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 July 20, 2021

            How to Overcome the Fear of Public Speaking (A Step-by-Step Guide)

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            How to Overcome the Fear of Public Speaking (A Step-by-Step Guide)

            You’re standing behind the curtain, just about to make your way on stage to face the many faces half-shrouded in darkness in front of you. As you move towards the spotlight, your body starts to feel heavier with each step. A familiar thump echoes throughout your body – your heartbeat has gone off the charts.

            Don’t worry, you’re not the only one with glossophobia(also known as speech anxiety or the fear of speaking to large crowds). Sometimes, the anxiety happens long before you even stand on stage.

            Your body’s defence mechanism responds by causing a part of your brain to release adrenaline into your blood – the same chemical that gets released as if you were being chased by a lion.

            Here’s a step-by-step guide to help you overcome your fear of public speaking:

            1. Prepare yourself mentally and physically

            According to experts, we’re built to display anxiety and to recognize it in others. If your body and mind are anxious, your audience will notice. Hence, it’s important to prepare yourself before the big show so that you arrive on stage confident, collected and ready.

            “Your outside world is a reflection of your inside world. What goes on in the inside, shows on the outside.” – Bob Proctor

            Exercising lightly before a presentation helps get your blood circulating and sends oxygen to the brain. Mental exercises, on the other hand, can help calm the mind and nerves. Here are some useful ways to calm your racing heart when you start to feel the butterflies in your stomach:

            Warming up

            If you’re nervous, chances are your body will feel the same way. Your body gets tense, your muscles feel tight or you’re breaking in cold sweat. The audience will notice you are nervous.

            If you observe that this is exactly what is happening to you minutes before a speech, do a couple of stretches to loosen and relax your body. It’s better to warm up before every speech as it helps to increase the functional potential of the body as a whole. Not only that, it increases muscle efficiency, improves reaction time and your movements.

            Here are some exercises to loosen up your body before show time:

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            1. Neck and shoulder rolls – This helps relieve upper body muscle tension and pressure as the rolls focus on rotating the head and shoulders, loosening the muscle. Stress and anxiety can make us rigid within this area which can make you feel agitated, especially when standing.
            2. Arm stretches – We often use this part of our muscles during a speech or presentation through our hand gestures and movements. Stretching these muscles can reduce arm fatigue, loosen you up and improve your body language range.
            3. Waist twists – Place your hands on your hips and rotate your waist in a circular motion. This exercise focuses on loosening the abdominal and lower back regions which is essential as it can cause discomfort and pain, further amplifying any anxieties you may experience.

            Stay hydrated

            Ever felt parched seconds before speaking? And then coming up on stage sounding raspy and scratchy in front of the audience? This happens because the adrenaline from stage fright causes your mouth to feel dried out.

            To prevent all that, it’s essential we stay adequately hydrated before a speech. A sip of water will do the trick. However, do drink in moderation so that you won’t need to go to the bathroom constantly.

            Try to avoid sugary beverages and caffeine, since it’s a diuretic – meaning you’ll feel thirstier. It will also amplify your anxiety which prevents you from speaking smoothly.

            Meditate

            Meditation is well-known as a powerful tool to calm the mind. ABC’s Dan Harris, co-anchor of Nightline and Good Morning America weekend and author of the book titled10% Happier , recommends that meditation can help individuals to feel significantly calmer, faster.

            Meditation is like a workout for your mind. It gives you the strength and focus to filter out the negativity and distractions with words of encouragement, confidence and strength.

            Mindfulness meditation, in particular, is a popular method to calm yourself before going up on the big stage. The practice involves sitting comfortably, focusing on your breathing and then bringing your mind’s attention to the present without drifting into concerns about the past or future – which likely includes floundering on stage.

            Here’s a nice example of guided meditation before public speaking:

            2. Focus on your goal

            One thing people with a fear of public speaking have in common is focusing too much on themselves and the possibility of failure.

            Do I look funny? What if I can’t remember what to say? Do I look stupid? Will people listen to me? Does anyone care about what I’m talking about?’

            Instead of thinking this way, shift your attention to your one true purpose – contributing something of value to your audience.

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            Decide on the progress you’d like your audience to make after your presentation. Notice their movements and expressions to adapt your speech to ensure that they are having a good time to leave the room as better people.

            If your own focus isn’t beneficial and what it should be when you’re speaking, then shift it to what does. This is also key to establishing trust during your presentation as the audience can clearly see that you have their interests at heart.[1]

            3. Convert negativity to positivity

            There are two sides constantly battling inside of us – one is filled with strength and courage while the other is doubt and insecurities. Which one will you feed?

            ‘What if I mess up this speech? What if I’m not funny enough? What if I forget what to say?’

            It’s no wonder why many of us are uncomfortable giving a presentation. All we do is bring ourselves down before we got a chance to prove ourselves. This is also known as a self-fulfilling prophecy – a belief that comes true because we are acting as if it already is. If you think you’re incompetent, then it will eventually become true.

            Motivational coaches tout that positive mantras and affirmations tend to boost your confidents for the moments that matter most. Say to yourself: “I’ll ace this speech and I can do it!”

            Take advantage of your adrenaline rush to encourage positive outcome rather than thinking of the negative ‘what ifs’.

            Here’s a video of Psychologist Kelly McGonigal who encourages her audience to turn stress into something positive as well as provide methods on how to cope with it:

            4. Understand your content

            Knowing your content at your fingertips helps reduce your anxiety because there is one less thing to worry about. One way to get there is to practice numerous times before your actual speech.

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            However, memorizing your script word-for-word is not encouraged. You can end up freezing should you forget something. You’ll also risk sounding unnatural and less approachable.

            “No amount of reading or memorizing will make you successful in life. It is the understanding and the application of wise thought that counts.” – Bob Proctor

            Many people unconsciously make the mistake of reading from their slides or memorizing their script word-for-word without understanding their content – a definite way to stress themselves out.

            Understanding your speech flow and content makes it easier for you to convert ideas and concepts into your own words which you can then clearly explain to others in a conversational manner. Designing your slides to include text prompts is also an easy hack to ensure you get to quickly recall your flow when your mind goes blank.[2]

            One way to understand is to memorize the over-arching concepts or ideas in your pitch. It helps you speak more naturally and let your personality shine through. It’s almost like taking your audience on a journey with a few key milestones.

            5. Practice makes perfect

            Like most people, many of us are not naturally attuned to public speaking. Rarely do individuals walk up to a large audience and present flawlessly without any research and preparation.

            In fact, some of the top presenters make it look easy during showtime because they have spent countless hours behind-the-scenes in deep practice. Even great speakers like the late John F. Kennedy would spend months preparing his speech beforehand.

            Public speaking, like any other skill, requires practice – whether it be practicing your speech countless of times in front of a mirror or making notes. As the saying goes, practice makes perfect!

            6. Be authentic

            There’s nothing wrong with feeling stressed before going up to speak in front of an audience.

            Many people fear public speaking because they fear others will judge them for showing their true, vulnerable self. However, vulnerability can sometimes help you come across as more authentic and relatable as a speaker.

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            Drop the pretence of trying to act or speak like someone else and you’ll find that it’s worth the risk. You become more genuine, flexible and spontaneous, which makes it easier to handle unpredictable situations – whether it’s getting tough questions from the crowd or experiencing an unexpected technical difficulty.

            To find out your authentic style of speaking is easy. Just pick a topic or issue you are passionate about and discuss this like you normally would with a close family or friend. It is like having a conversation with someone in a personal one-to-one setting. A great way to do this on stage is to select a random audience member(with a hopefully calming face) and speak to a single person at a time during your speech. You’ll find that it’s easier trying to connect to one person at a time than a whole room.

            With that said, being comfortable enough to be yourself in front of others may take a little time and some experience, depending how comfortable you are with being yourself in front of others. But once you embrace it, stage fright will not be as intimidating as you initially thought.

            Presenters like Barack Obama are a prime example of a genuine and passionate speaker:

            7. Post speech evaluation

            Last but not the least, if you’ve done public speaking and have been scarred from a bad experience, try seeing it as a lesson learned to improve yourself as a speaker.

            Don’t beat yourself up after a presentation

            We are the hardest on ourselves and it’s good to be. But when you finish delivering your speech or presentation, give yourself some recognition and a pat on the back.

            You managed to finish whatever you had to do and did not give up. You did not let your fears and insecurities get to you. Take a little more pride in your work and believe in yourself.

            Improve your next speech

            As mentioned before, practice does make perfect. If you want to improve your public speaking skills, try asking someone to film you during a speech or presentation. Afterwards, watch and observe what you can do to improve yourself next time.

            Here are some questions you can ask yourself after every speech:

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            • How did I do?
            • Are there any areas for improvement?
            • Did I sound or look stressed?
            • Did I stumble on my words? Why?
            • Was I saying “um” too often?
            • How was the flow of the speech?

            Write everything you observed down and keep practicing and improving. In time, you’ll be able to better manage your fears of public speaking and appear more confident when it counts.

            If you want even more tips about public speaking or delivering a great presentation, check out these articles too:

            Reference

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