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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 July 8, 2020

            How to Say No When You Say Yes Too Often

            How to Say No When You Say Yes Too Often

            Do you say yes so often that you realize you aren’t really happy about this, wondering how to say no to people?

            For years, I was a serial people pleaser. Known as someone who would step up, I would gladly make time especially when it came to volunteering for certain causes. I proudly carried this role all through grade school, college, even through law school. For years, I thought saying “no” meant I would disappoint a good friend or someone I respected.

            But somewhere along the way, I noticed I wasn’t quite living my life. Instead, I seem to have created a schedule that was a strange combination of meeting the expectations of others, what I thought I should be doing, and some of what I actually wanted to do. The result? I had a packed schedule that left me overwhelmed and unfulfilled.

            It took a long while but I learned the art of saying no. Saying ‘no’ meant I no longer catered fully to everyone else’s needs and could make more room for what I really wanted to do. Instead of cramming too much in, I chose to pursue what really mattered. I started to manage my time more around my own needs and interests. When that happened, I became a lot happier. And guess what? I hardly disappointed anyone.

            The Importance of Saying No

            When you learn the art of saying ‘no,’ you begin to look at the world differently. Rather than seeing all of the things you could or should be doing (and aren’t doing), you start to look at how to say yes to what’s important.

            In other words, you aren’t just reacting to what life throws at you. You seek the opportunities that move you to where you want to be.

            Successful people aren’t afraid to say no. Oprah Winfrey considered one of the most successful women in the world confessed that it was much later in life when she learned how to say no. Even after she had become internationally famous, she felt she had to say yes to virtually everything. It was only when she realized that after years of struggling with saying no, I finally got to this question: “What do I want?”

            Being able to say no also helps you manage your time better.

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            Warren Buffett views no as essential to his success. He said,

            “The difference between successful people and really successful people is that really successful people say no to almost everything.”

            When I made ‘no’ a part of my toolbox, I drove more of my own success focusing on fewer things and doing them well.

            How We Are Pressured to Say Yes

            It’s no wonder a lot of us find it hard to say ‘no.’

            From an early age, we are conditioned to say ‘yes.’ We said yes probably hundreds of time in order to graduate from high school and then get into college. We said yes to find work. We said yes get a promotion. We said yes to find love and then yes again to stay in a relationship. We said yes to find and keep friends.

            We say yes because it feels better to help someone. We say yes because it can seem like the right thing to do. We say yes because we think that is key to success. And we say yes because the request might come from someone who is hard to resist like the boss.

            And that’s not all. The pressure to say yes doesn’t just come from others. We put a lot of pressure on ourselves. At work, we say yes because we compare ourselves to others who seem to be doing more than we are. Outside of work, we say yes because we feel guilty we aren’t doing enough to spend time with family or friends.

            The message no matter where we turn is nearly always, “You really could be doing more.” The result? When people ask us for our time, we are heavily conditioned to say yes.

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            How to Say No Without Feeling Guilty

            Deciding to add the word ‘no’ to your toolbox is no small thing. Perhaps you already say ‘no’ but not as much as you would like. Maybe you have an instinct that if you were to learn the art of ‘no’ that you could finally create more time for things you care about. But let’s be honest, using the word ‘no’ doesn’t come easily for many people.

            The 3 Rules of Thumbs for Saying No

            1. You Need to Get Out of Your Comfort Zone

            Let’s face it. It is hard to say no. Setting boundaries around your time especially you haven’t done it much in the past will feel awkward.

            2. You Are the Air Traffic Controller of Your Time

            Remember that you are the only one who understands the demands for your time. Think about it, who else knows about all of the demands on your time? No one. Only you are at the center of all of these requests. are the only one that understands what time you really have.

            3. Saying ‘No’ Means Saying ‘Yes’ to Something That Matters

            When we decide not to do something, it means we can say yes to something else. You have a unique opportunity to decide how you spend your precious time.

            6 Ways to Start Saying No

            Incorporating that little word ‘no’ into your life can be transformational. Turning some things down will mean you can open doors to what really matters. Here are some essential tips to learn the art of no:

            1. Check in With Your Obligation Meter

            One of the biggest challenges to saying ‘no’ is a feeling of obligation. Do you feel you have a responsibility to say yes and worry that saying no reflect poorly on you?

            Ask yourself whether you truly have the duty to say yes. Check your assumptions or beliefs about whether you carry the responsibility to say yes. Turn it around and instead ask what duty you owe to yourself.

            2. Resist the Fear of Missing out (FOMO)

            Do you have a fear of missing out (FOMO)? FOMO can follow us around in so many ways. At work, we volunteer our time because we fear we won’t move ahead. In our personal lives, we agree to join the crowd because FOMO even while we ourselves aren’t enjoying the fun.

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            Check in with yourself. Are you saying yes because of FOMO or because you really want to say yes? More often than not, running after fear doesn’t make us feel better.

            3. Check Your Assumptions About What It Means to Say ‘No’

            Do you dread the reaction you will get if you say no? Often, we say ‘yes’ because we worry about how others will respond or the consequences of saying no or because of the consequences. We may be afraid to disappoint others or think we will lose respect from others. We often forget how much we are disappointing ourselves along the way.

            Keep in mind that saying ‘no’ can be exactly what is needed to send the right message that you have limited time. In the tips below, you will see how to communicate your no in a gentle and loving way. You might disappoint someone initially but drawing a boundary can bring you the freedom you need so that you can give freely of yourself when you truly want to.

            4. When the Request Comes In, Sit on It

            Sometimes, when we are in the moment, we instinctively agree. The request might make sense at first. Or we typically have said yes to this request in the past.

            Give yourself a little time to reflect on whether you really have the time, or can do the task properly. You may decide the best option is to say ‘no.’ There is no harm in giving yourself the time to decide.

            5. Communicate Your ‘No’ with Transparency and Kindness

            When you are ready to tell someone no, communicate your decision clearly. The message can be open and honest to ensure the recipient that your reasons have to do with your limited time.

            Resist the temptation not to respond or communicate all. But do not feel obligated to provide a lengthy account about why you are saying no.

            A clear communication with a short explanation is all that is needed. I have found it useful to tell people that I have many demands and need to be careful with how I allocate my time. I will sometimes say I really appreciate that they came to me and for them to check in again if the opportunity arises another time.

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            6. Consider How to Use a Modified ‘No’

            If you are under pressure to say yes but want to say no, you may want to consider downgrading a “yes” to a “yes but…” giving you an opportunity to condition your agreement to what works best for you.

            Sometimes, the condition can be to do the task but not in the time frame that was originally requested. Or perhaps you can do part of what has been asked.

            Final Thoughts

            Beginning right now, you can change how you respond to requests for your time. When the request comes in, take yourself off autopilot where you might normally say yes.

            Use the request as a fresh request to draw a healthy boundary around your time. Pay particular attention to when you place certain demands on yourself. If you are the one placing the demand on yourself, try to evaluate the demand as if it were coming from somewhere else.

            Try it now. Say no to a friend who continues to take advantage of your goodwill. Or, draw the line with a workaholic colleague and tell them you will complete the project but not by working all weekend. Or, tell someone in your family you can’t loan them money again because they never paid you back the last time. You’ll find yourself much happier.

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            Featured photo credit: Chris Ainsworth via unsplash.com

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