Advertising
Advertising

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

d7054aae1c377d68f18fb6402cc00939

    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.

    Advertising

    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

    fd3d6a495016ecdfc22346b4e9d861ea

      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.)

      Advertising

      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

      a31a0bdccc646a88c3ce27d74deab70f

        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.

        Advertising

        13. We break down

        0aa2b0048ae560e2f99acf896f1b13da

          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.

          Advertising

          17. We want to be social

          d6cf00b75e19ba05cc65e680e1aa29da

            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

            More by this author

            Missy Mitchell

            Author, Artist, Advocate

            20 Things Parents of Critically Ill Children Want You To Know 15 Things Only People Living With A Health Problem Know 10 Things to Pack For Your Child’s Hospital Stay All About The Bass! 7 Amazing Things Happen When You Stop Worrying About Body Size 9 Things Only People With Migraines Would Understand

            Trending in Communication

            1 7 Ways to Get Rid of Negative Energy and Become Positive 2 10 Things a Happy Person Does Differently 3 50+ Best Motivational Quotes To Overcome Life’s Challenges 4 41 Beautiful Pictures That Show What True Love Is All About 5 The Lifehack Show Episode 3: Why Validation is Key to Lasting Relationships

            Read Next

            Advertising
            Advertising
            Advertising

            Last Updated on July 16, 2019

            7 Ways to Get Rid of Negative Energy and Become Positive

            7 Ways to Get Rid of Negative Energy and Become Positive

            Negativity affects ourselves and everyone around us. It limits our potential to become something great and live a fulfilling, purposeful life. Negativity has a tangible effect on our health, too. Research has shown that people who cultivate negative energy experience more stress, more sickness, and less opportunity over the course of their lives than those who choose to live positively.

            When we make a decision to become positive, and follow that decision up with action, we will begin to encounter situations and people that are also positive. The negative energy gets edged out by all positive experiences. It’s a snowball effect.

            Although negative and positive thoughts will always exist, the key to becoming positive is to limit the amount of negativity that we experience by filling ourselves up with more positivity.

            Here are some ways to get rid of negativity and become more positive.

            1. Become Grateful for Everything

            When life is all about us, it’s easy to believe that we deserve what we have. An attitude of entitlement puts us at the center of the universe and sets up the unrealistic expectation that others should cater to us, our needs, and our wants. This vain state of existence is a surefire way to set yourself up for an unfulfilled life of negativity.

            People living in this sort of entitlement are “energy suckers”–they are always searching for what they can get out of a situation. People that don’t appreciate the nuances of their lives live in a constant state of lacking. And it’s really difficult to live a positive life this way.

            Advertising

            When we begin to be grateful and appreciate everything in our lives–from the small struggles that make us better, to the car that gets us from A to B every day–we shift our attitude from one of selfishness, to one of appreciation. This appreciation gets noticed by others, and a positive harmony begins to form in our relationships.

            We begin to receive more of that which we are grateful for, because we’ve opened ourselves up to the idea of receiving, instead of taking. This will make your life more fulfilling, and more positive.

            2. Laugh More, Especially at Yourself

            Life gets busy, our schedules fill up, we get into relationships, and work can feel task oriented and routine-driven at times. Being human can feel more like being a robot. But having this work-driven, serious attitude often results in negative and performance oriented thinking.

            Becoming positive means taking life less seriously and letting yourself off the hook. This is the only life that you get to live, why not lighten up your mood?

            Laughter helps us become positive by lightening our mood and reminding us not to take life so seriously. Are you sensitive to light sarcasm? Do you have trouble laughing at jokes? Usually, people who are stressed out and overly serious get most offended by sarcasm because their life is all work and no play.

            If we can learn to laugh at ourselves and our mistakes, life will become more of an experiment in finding out what makes us happy. And finding happiness means finding positivity.

            Advertising

            3. Help Others

            Negativity goes hand in hand with selfishness. People that live only for themselves have no higher purpose in their lives. If the whole point of this world is only to take care of yourself and no one else, the road to a long-term fulfillment and purpose is going to be a long one.

            Positivity accompanies purpose. The most basic way to create purpose and positivity in your life is to begin doing things for others. Start small; open the door for the person in front of you at Starbucks or ask someone how their day was before telling them about yours.

            Helping others will give you an intangible sense of value that will translate into positivity. And people might just appreciate you in the process.

            4. Change Your Thinking

            We can either be our best coach or our best enemy. Change starts from within. If you want to become more positive, change the wording of your thoughts. We are the hardest on ourselves, and a stream of negative self talk is corrosive to a positive life.

            The next time you have a negative thought, write it down and rephrase it with a positive spin. For example, change a thought like, “I can’t believe I did so horribly on the test–I suck.” to “I didn’t do as well as I hoped to on this test. But I know I’m capable and I’ll do better next time.”

            Changing our self-talk is powerful.

            Advertising

            5. Surround Yourself with Positive People

            We become most like the people that we surround ourselves with. If our friend group is full of negative energy-suckers and drama queens, we will emulate that behavior and become like them. It is very difficult to become more positive when the people around us don’t support or demonstrate positive behavior.

            As you become more positive, you’ll find that your existing friends will either appreciate the new you or they will become resistant to your positive changes. This is a natural response.

            Change is scary; but cutting out the negative people in your life is a huge step to becoming more positive. Positive people reflect and bounce their perspectives onto one another. Positivity is a step-by-step process when you do it solo, but a positive group of friends can be an escalator.

            6. Get into Action

            Negative thoughts can be overwhelming and challenging to navigate. Negativity is usually accompanied by a “freak-out” response, especially when tied to relationships, people and to worrying about the future. This is debilitating to becoming positive and usually snowballs into more worry, more stress and more freak-outs.

            Turn the negative stress into positive action. The next time you’re in one of these situations, walk away and take a break. With your eyes closed, take a few deep breaths. Once you’re calm, approach the situation or problem with a pen and pad of paper. Write out four or five actions or solutions to begin solving the problem.

            Taking yourself out of the emotionally charged negative by moving into the action-oriented positive will help you solve more problems rationally and live in positivity

            Advertising

            7. Take Full Responsibility, Stop Being the Victim

            You are responsible for your thoughts.

            People that consistently believe that things happen to them handicap themselves to a victim mentality. This is a subtle and deceptive negative thought pattern. Phrases like “I have to work” or “I can’t believe he did that to me” are indicators of a victim mentality. Blaming circumstances and blaming others only handicaps our decision to change something negative into something positive.

            Taking full responsibility for your life, your thoughts and your actions is one of the biggest steps in creating a more positive life. We have unlimited potential within to create our own reality, change our life, and change our thoughts. When we begin to really internalize this, we discover that no one can make us feel or do anything. We choose our emotional and behavioral response to people and circumstances.

            Make positive choices in favor of yourself.

            “Watch your thoughts; they become words. Watch your words; they become actions. Watch your actions; they become habit. Watch your habits; they become character. Watch your character; it becomes your destiny” ― Lao Tzu

            More About Positivity

            Featured photo credit: Brooke Cagle via unsplash.com

            Read Next