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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 March 30, 2020

            What Does Self-Conscious Mean? (And How to Stop Being It)

            What Does Self-Conscious Mean? (And How to Stop Being It)

            Have you ever walked into a room and felt like your nerves simply couldn’t handle it? Your heart beats fast, you start to sweat, and you feel like all eyes are on you (even if they’re really not). This is just one of the many ways that being self-conscious can rear its ugly head.

            You may not even realize you’re self-conscious, and you may be wondering, “What does self-conscious mean?” That’s a good place to start.

            This article will define self-consciousness, show how practically everyone has faced it at one point or another, and give you tips to avoid it.

            What Does Self-Conscious Mean?

            According to the Merriam-Webster dictionary, self-conscious is defined as “conscious of one’s own acts or states as belonging to or originating in oneself.”[1]

            Not so bad, right? There’s another definition, though — one that speaks more to what you’re going through: “feeling uncomfortably conscious of oneself as an object of the observation of others.” For those of us who regularly deal with extreme self-consciousness, that second definition sounds about right.

            There are many different ways self-consciousness can spring up. You may feel self-conscious around people you know, like your family members or closest friends. You may feel self-conscious at work, even though you spend hours every week around your co-workers. Or you may feel self-conscious when out in public and surrounded by strangers. However, you probably don’t feel self-conscious when you’re home alone.

            How to Stop Being Too Self-Conscious

            When you’re in the throes of self-consciousness, it’s nearly impossible to remember how to stop feeling that way. That’s why it’s so important to prepare ahead of time, when you’re feeling ready to tackle the problem instead of succumbing to it.

            Here are a variety of ways to feel better about yourself and stop thinking about how others see you.

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            1. Ask Yourself, “So What?”

            One way to banish negative, self-conscious thoughts is to do just that: banish them.

            The next time you walk into a room and feel your face getting red, think to yourself, “So what?” How much does it really matter if people don’t like how you look or act? What’s the worst that could happen?

            Most of the time, you’ll find that you don’t have a good answer to this question. Then, you can immediately start assigning such thoughts less importance. With self-awareness, you can acknowledge that your negative thoughts are present and realize that you don’t agree with them.[2] They’re just thoughts, after all.

            2. Be Honest

            A lie that self-consciousness might tell is that there’s one way to act or feel. Honestly, though, everyone else is just figuring life out as well. There isn’t a preferred way to show up to an event, gathering, or public place. What you can do is be honest with your feelings and thoughts.[3]

            If you feel offended by something someone says, you don’t have to smile to be polite or laugh to fit in with the crowd. Instead, you can politely say why you disagree or excuse yourself and find a group of people who you relate to better. If you’re nervous, don’t overcompensate by trying to look relaxed and casual — it’ll be obvious you’re putting on a front. Instead, nothing is more endearing than saying, “I’m a little nervous!” to a room of people who probably feel the exact same way.

            On the same note, if you don’t understand why someone wants you to do something, question it. You can do this at work, at home, or even with people you don’t know well. Nobody should force you to do something you don’t want to do.

            Also, even if you’re willing to do what’s asked of you, there’s nothing wrong with asking for more clarification. People will realize that you’re not a person to be bossed around.

            3. Understand Why You’re Struggling at Work

            Being self-conscious at work can get in the way of your daily responsibilities, your relationships with co-workers, and even your career as a whole. If you’re facing some sort of conflict but you’re too nervous to speak up, you may be at the whim of what happens to you instead of taking some control.

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            If you’re usually confident at work, you may be wondering where this new self-consciousness is coming from. It’s possible that you’re dealing with burnout.[4] Common signs are anxiety, fatigue and distraction, all of which can leave you feeling under-confident.

            4. Succeed at Something

            When you create success in your life, it’s easier to feel confident[5] and less self-conscious. If you feel self-conscious at work, finish the project that’s been looming over your head. If you feel self-conscious in the gym, complete an advanced workout class.

            Exposing yourself to what you’re scared of and then succeeding at it in some way (even just by finishing it) can do wonders for your self-esteem. The more confidence you build, the more likely you are to have more success in the future, which will create a cycle of confidence-building.

            5. Treat All of You — Not Just Your Self-Consciousness

            Trying to solve your self-consciousness alone may not treat the root of the problem. Instead, take a well-rounded approach to lower your self-consciousness and build confidence in areas where you may struggle.

            Even professional counselors are embracing this holistic type of treatment[6] because they feel that the health of the mind and body are inextricably linked. This approach combines physical, spiritual, and psychological components. Common activities and treatments include meditation, yoga, massage, and healthy changes to diet and exercise.

            If much of this is new to you, it will pay to give it a try. You never know how it will impact you.

            If you’re feeling self-conscious about how your body looks, a massage that makes you feel great could boost your confidence. If you try a new workout, you could have something exciting to talk about the next time you’re in a group setting.

            Putting yourself in a new situation and learning that you can get through it with grace can give you the confidence to get through all sorts of events and nerve-wracking moments.

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            6. Make the Changes That Are Within Your Control

            Let’s say you walk into a room and you’re self-conscious about how you look. However, you may have put a lot of time and effort into your outfit. Even though it may stand out, this is how you have chosen to express yourself.

            You have to work on your internal confidence, not your external appearance. There’s nothing to change other than your outlook.

            On the other hand, maybe there’s something that you don’t like about yourself that you can change. For example, maybe you hate how a birthmark on your face looks or have varicose veins that you think are unsightly. If you can do something about these things, do it! There’s nothing wrong with changing your appearance (or skills, education, etc.) if it’s going to make you more confident.

            You don’t have to accept your current situation for acceptance’s sake. There’s no award for putting up with something you hate. Confidence is also required to make changes that are scary, even if they’re for the better. Plus, it may be an easier fix than you thought. For example, treating varicose veins doesn’t have to involve surgery — sometimes simple compression stockings will take care of the problem.[7]

            7. Realize That Everyone Has Awkward Moments

            Everyone has said something awkward to someone else and lived to tell the tale. We’ve all forgotten somebody’s name or said, “You too!” when the concession stand girl says to enjoy our movie. Not only are these things uber-common, but they’re not nearly as embarrassing as you feel they are.

            Think about how you react when someone else does something awkward. Do you think, “Wow, that person’s such a loser!” or do you think, “What a relief, I’m not the only one who does that.” Chances are good that’s the same reaction others have to you when you stumble.

            Remember, self-consciousness is a state of mind that you have control over. You don’t have to feel this way. Do what you need to in order to build your confidence, put your self-consciousness in perspective, and start exercising your “I feel awesome about myself” muscle. It’ll get easier with time.

            When Is Being Self-Conscious a Good Thing?

            Self-consciousness can sometimes be a good thing[8], but you have to take the awkwardness and nerves out of it.

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            In this case, “self-aware” is a much better term. Knowing how you come off to people is an excellent trait; you’ll be able to read a room and understand how what you do and say affects others. These are fantastic skills for people work and personal relationships.

            Self-awareness helps you dress appropriately for the occasion, tells you that you’re talking too loud or not loud enough, and guides a conversation so you don’t offend or bore anyone.

            It’s not about being someone you’re not — that can actually have adverse effects, just like self-consciousness. Instead, it’s about turning up certain aspects of yourself to perform well in the situation.

            Final Thoughts

            When you’re self-conscious, you’re constantly battling with yourself in an effort to control how other people view you. You try to change yourself to suit what you think other people want to see.

            The truth, though, is that you can’t actually control how other people view you — and you may not even be correct about how they view you in the first place.

            Being confident doesn’t happen overnight. Instead, it happens in small steps as you slowly build your confidence and say “no” to your self-consciousness. It also requires accepting that you’re going to feel self-conscious sometimes, and that’s okay.

            Sometimes worrying that there is a problem can be more stressful than the problem itself. Feeling bad for feeling self-conscious can be more troublesome than simply feeling it and getting on with the day.

            Forgive yourself for being human and make the small changes that will lead to better confidence in the future.

            More Tips for Improving Your Self-Esteem

            Featured photo credit: Cata via unsplash.com

            Reference

            [1] Merriam-Webster: Self-conscious
            [2] Bustle: 7 Tips On How To Stop Feeling Self-Conscious
            [3] Marc and Angel: 10 Things to Remember When You Feel Unsure of Yourself
            [4] Bostitch: How to Protect Small Businesses From Burnout
            [5] Psychology Today: Self-conscious? Get Over It
            [6] Wake Forest University: Embracing Holistic Medicine
            [7] Center for Vein Restoration: What Causes Venous Ulcers, and How Are They Treated?
            [8] Scientific American: The Pros and Cons of Being Self-Aware

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