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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

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            Last Updated on January 16, 2020

            12 Simple Ways to Boost Your Confidence Right Now

            12 Simple Ways to Boost Your Confidence Right Now

            The way you feel about yourself greatly influences how you live and interact with others. If you are confident about yourself, you tend to see yourself positively and actually enjoy spending time with and around people. You don’t feel self-conscious or awkward around others, and that allows you to live your fullest and happiest life.

            However, if you’re drowning in a sea of self-doubt, hesitancy and shyness, you often withdraw and isolate yourself from others and avoid interacting and connecting with people. That anxiety you feel in the pit of your stomach when you are around people is holding you back greatly and it is not good for your emotional health and overall well-being. You need to do something about it if you are low in self-confidence or have friends or family members who are not confident.

            “Confidence isn’t walking into a room thinking you’re better than everyone, it’s walking in not having to compare yourself to anyone” – Anonymous

            Here are simple, practical tips to boost your confidence right now and make you feel and act your best.

            1. Stop labeling yourself as awkward, timid or shy.

            When you label yourself as awkward, timid or shy, you sub-consciously tell your mind to act accordingly and psychologically feel inclined to live up to those expectations. Instead of labeling and entertaining negative self-talk, visualize and affirm yourself as confident and strong. Close your eyes for a minute and visualize yourself in different situation as you would like to be.

            Be your own cheerleader. Experts believe that positive affirmation and good mental practices like picturing yourself winning or achieving a goal can lead to greater feelings of self-assurance and prepare your brain for success.[1] As the saying goes, “seeing is believing.” Picture yourself as confident and soon enough you will begin to manifest behavior that gives evidence to this new ‘fact.’

            2. Recognize that the world is not focused on you (unless, of course, you are Kanye West).

            That means you don’t have to be excessively sensitive about who you are or what you are doing (or not doing). You are not on the center stage; there is no need for preoccupation with self and perfectionism. As rap music star Rocko sings, “You just do you and I will do me, aight?”

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            Forget about trying to please everyone or being perfect. Trying to be perfect and being a people-pleaser puts too much pressure on you and creates unnecessary anxiety. Besides, people are too preoccupied with their own issues to pay much attention to your every move unless, of course, you are a mega famous, super celebrity like Beyonce or Kanye West.

            3. Focus on other people as opposed to yourself.

            If you are low on confidence, self-conscious, nervous and shy in social situations, focus your attention on other people and what they are saying or doing instead of focusing on your own awkwardness.

            For example, think about what it is that is interesting about the person who’s the centre of the party or the guy or girl you are talking with. Prompt them to talk more about themselves and be genuinely curious and interested in what they say. You will instantly come across as confident and warmhearted.

            People generally want to talk about themselves, be heard and understood. They will love it when you’re eager and willing to listen to them and really hear what they have to say.

            This habit of focusing more on what you love in others as opposed to what you dislike in yourself will not only help you become more assertive and comfortable in virtually all social situations, but also instantly make you feel great about yourself.

            4. Know (and accept) yourself for who you are.

            Chinese military general, strategist and philosopher Sun Tzu, author of the internationally acclaimed book The Art of War, said, “Know yourself and you will win all battles.” Even in the battle with lack of confidence, you will need to know yourself to win.

            Knowing yourself starts with understanding that people are not all the same, neither are all social situation suitable for everyone. You might not be confident in large gatherings, but you could be bold and confident in one-on-one and small group interactions. We all have our own unique gifts and unique ways of expressing ourselves. Embrace yours!

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            Introverts, for example, have a quiet confidence that is, unfortunately, often confused for shyness. They are naturally low key and prefer to spend time alone. However, this natural disposition affords them certain unique gifts, such as an ability to listen better than most people and notice things that others don’t.

            Your uniqueness is where your strength and advantage lies. You won’t be comfortable and confident in all situations all the time. Albert Einstein said,

            “Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.”

            5. Crack a smile.

            If there is one sure way to instantly boost your confidence, it’s cracking a smile. Christine Clapp, a public speaking expert at The George Washington University, says that flashing those pretty, pearly white teeth will immediately make you appear both confident and composed. But, the effect of smiling is not just external. Studies show that smiling can also help nix feelings of stress and pave the way for a happier and more relaxed you.[2]

            Not a bad return for something seemingly so trite, wouldn’t you agree?

            6. Break a sweat—with exercise.

            Working out is another great way to make yourself feel amazing and confident. Science has shown that exercising increases your endorphins, helps reduce stress, tones your muscles and makes you feel happy and confident.[3]

            And hey, all you have to do is take a walk a few times a week and you’ll see the benefits. What seems to matter—as far as your confidence goes—is whether you break a sweat, not how strenuous your session is, which is pretty cool. Start working out now.

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            7. Groom yourself.

            This might seem mundane, but it’s amazing how much of a difference a shower and shave can have on your confidence and self-image. And when you spritz on a scent, the boost on confidence and self-esteem is incredible. As it turns out, your favorite fragrance does more than make you smell oh-so-nice.

            A study found that a fragrance can inspire confidence in men. Interestingly, the study also found that the more a man likes the fragrance, the more confident he might feel. Another study found that 90% of women feel more confident while wearing a scent than those who go fragrance-free.

            8. Dress nicely.

            Another one that might seem trite, but it works. If you dress nicely, you’ll instantly feel good about yourself and give your confidence a real boost. That is largely because you’ll feel attractive, presentable and sometimes even successful in nice clothes.

            While dressing nicely means something different for everyone, it does not necessarily mean wearing $500 designer outfits. It means wearing clothes that are clean, that you are comfortable in and that are nice-looking and presentable, including casual clothes.

            9. Do activities you enjoy.

            Whether it is reading a book, playing a musical instrument, riding your bicycle or going fishing, do what you really enjoy and what makes you truly happy often. It will boost your self-esteem, soothe your ego and allow you to identify with your gifts and talents. That will in turn bolster your self-belief and grow your confidence exponentially.

            You might not become popular for doing what you love, but you might not even want to be popular at all. Being popular doesn’t make you happy; doing what you love does.

            10. Prepare for the possibility of rejection / setback.

            Late World No. 1 professional tennis player Arthur Ashe said, “One important key to success is self-confidence. A key to self-confidence is preparation.” You need to prepare for the possibility of rejection and setback.

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            Why?

            Everybody suffers rejection and setback at one point or another. You are not exempted. The question on your mind, therefore, should not be if you will be rejected, but how you will handle rejection when it comes.

            Prepare yourself adequately in every situation to minimize the risk and effect of rejection and so that your confidence is not broken. For example, learn public speaking and rehearse what you are going to say beforehand if you have landed a public speaking engagement. That way, you are sure of yourself and confident you have what it takes to hack it. If you are rejected, don’t take it personally.

            Rejection and setbacks happen to the best of us. Take it as a learning experience. Learn from your mistakes and move on.

            11. Face uncomfortable situations square in the face.

            Don’t run away from uncomfortable situations. Running away from people or situations because you feel scared, shy or timid only confirms and reinforces your shyness. Instead, face the situation that makes you uneasy square in the face. For example, go ahead and talk to that person you are afraid to approach, or go straight to the front of your yoga class! What’s the worst that can happen?

            Prepare and be ready for any eventuality. The more you face your fears, the more you realize you are stronger than you thought and the more confident you get. This simple, yet admittedly courageous, act makes you unstoppable. You get comfortable being uncomfortable and begin to feel like you can take on the world. And that is the hallmark of someone destined for great things.

            12. Sit up straight and walk tall—you are awesome!

            Yes, sit up straight and believe you are awesome. Don’t slump in your chair or slouch your shoulders. Experts say the right stance can not only keep your self-esteem and mood lifted, but also lead to more confidence in your own thoughts.[4]

            The way to sit is to open up your chest and keep your head level so that you look and feel poised and assured. And when you get up, stand tall and walk like you’re on a mission. People who sit up straight and walk tall are more attractive and instantly feel more confident. Try it now: you’ll feel fierce and confident just by sitting up straight and walking tall.

            Featured photo credit: Freshh Connection via unsplash.com

            Reference

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