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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 November 15, 2018

            Success In Reaching Goals Is Determined By Mindset

            Success In Reaching Goals Is Determined By Mindset

            What do you think it takes to achieve your goals? Hard work? Lots of actions? While these are paramount to becoming successful in reaching our goals, neither of these are possible without a positive mindset.

            As humans, we naturally tend to lean towards a negative outlook when it comes to our hopes and dreams. We are prone to believing that we have limitations either from within ourselves or from external forces keeping us from truly getting to where we want to be in life. Our tendency to think that we’ll “believe it when we see it” suggests that our mindsets are focused on our goals not really being attainable until they’ve been achieved. The problem with this is that this common mindset fuels our limiting beliefs and shows a lack of faith in ourselves.

            The Success Mindset

            Success in achieving our goals comes down to a ‘success mindset’. Successful mindsets are those focused on victory, based on positive mental attitudes, empowering inclinations and good habits. Acquiring a success mindset is the sure-fire way to dramatically increase your chance to achieve your goals.

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            The idea that achieving our goals comes down to our habits and actions is actually a typical type of mindset that misses a crucial point; that our mindset is, in fact, the determiner of our energy and what actions we take. A negative mindset will tend to create negative actions and similarly if we have a mindset that will only set into action once we see ‘proof’ that our goals are achievable, then the road will be much longer and arduous. This is why, instead of thinking “I’ll believe it when I see it”, a success mindset will think “I’ll see it when I believe it.”

            The Placebo Effect and What It Shows Us About The Power of Mindset

            The placebo effect is a perfect example of how mindset really can be powerful. In scientific trials, a group of participants were told they received medication that will heal an ailment but were actually given a sugar pill that does nothing (the placebo). Yet after the trial the participants believed it’s had a positive effect – sometimes even cured their ailment even though nothing has changed. This is the power of mindset.

            How do we apply this to our goals? Well, when we set goals and dreams how often do we really believe they’ll come to fruition? Have absolute faith that they can be achieved? Have a complete unwavering expectation? Most of us don’t because we hold on to negative mindsets and limiting beliefs about ourselves that stop us from fully believing we are capable or that it’s at all possible. We tend to listen to the opinions of others despite them misaligning with our own or bow to societal pressures that make us believe we should think and act a certain way. There are many reasons why we possess these types of mindsets but a success mindset can be achieved.

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            How To Create a Success Mindset

            People with success mindsets have a particular way of perceiving things. They have positive outlooks and are able to put faith fully in their ability to succeed. With that in mind, here are a few ways that can turn a negative mindset into a successful one.

            1. A Success Mindset Comes From a Growth Mindset

            How does a mindset even manifest itself? It comes from the way you talk to yourself in the privacy of your own head. Realising this will go a long way towards noticing how you speak to yourself and others around you. If it’s mainly negative language you use when you talk about your goals and aspirations then this is an example of a fixed mindset.

            A negative mindset brings with it a huge number of limiting beliefs. It creates a fixed mindset – one that can’t see beyond it’s own limitations. A growth mindset sees these limitations and looks beyond them – it finds ways to overcome obstacles and believes that this will result in success. When you think of your goal, a fixed mindset may think “what if I fail?” A growth mindset would look at the same goal and think “failures happen but that doesn’t mean I won’t be successful.”

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            There’s a lot of power in changing your perspective.

            2. Look For The Successes

            It’s really important to get your mind focused on positive aspects of your goal. Finding inspiration through others can be really uplifting and keep you on track with developing your success mindset; reinforcing your belief that your dreams can be achieved. Find people that you can talk with about how they achieved their goals and seek out and surround yourself with positive people. This is crucial if you’re learning to develop a positive mindset.

            3. Eliminate Negativity

            You can come up against a lot of negativity sometimes either through other people or within yourself. Understanding that other people’s negative opinions are created through their own fears and limiting beliefs will go a long way in sustaining your success mindset. But for a lot of us, negative chatter can come from within and these usually manifest as negative words such as can’t, won’t, shouldn’t. Sometimes, when we think of how we’re going to achieve our goals, statements in our minds come out as negative absolutes: ‘It never works out for me’ or ‘I always fail.’

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            When you notice these coming up you need to turn them around with ‘It always works out for me!’ and ‘I never fail!’ The trick is to believe it no matter what’s happened in the past. Remember that every new day is a clean slate and for you to adjust your mindset.

            4. Create a Vision

            Envisioning your end goal and seeing it in your mind is an important trait of a success mindset. Allowing ourselves to imagine our success creates a powerful excitement that shouldn’t be underestimated. When our brain becomes excited at the thought of achieving our goals, we become more committed, work harder towards achieving it and more likely to do whatever it takes to make it happen.

            If this involves creating a vision board that you can look at to remind yourself every day then go for it. Small techniques like this go a long way in sustaining your success mindset and shouldn’t be dismissed.

            An Inspirational Story…

            For centuries experts said that running a mile in under 4 minutes was humanly impossible. On the 6th May 1954, Rodger Bannister did just that. As part of his training, Bannister relentlessly visualised the achievement, believing he could accomplish what everyone said wasn’t possible…and he did it.

            What’s more amazing is that, as soon as Bannister achieved the 4-minute mile, more and more people also achieved it. How was this possible after so many years of no one achieving it? Because in people’s minds it was suddenly possible – once people knew that it was achievable it created a mindset of success and now, after over fifty years since Bannister did the ‘impossible’, his record has been lowered by 17 seconds – the power of the success mindset!

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