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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 November 26, 2020

            How Relationships Building Helps Achieve Career Success

            How Relationships Building Helps Achieve Career Success

            As playwright Wilson Mizner supposedly said all the way back in the 1930s,

            “Be kind to everyone on the way up; you will meet the same people on the way down.”

            The adage is the perfect prototype for relationship building in 2020, although we may want to expand Mizner’s definition of “kind” to include being helpful, respectful, grateful, and above all, crediting your colleagues along the way.

            5 Ways to Switch on Your Relationship Building Magnetism

            Relationship building does not come easily to all. Today’s computer culture makes us more insular and less likely to reach out—not to mention our new work-from-home situation in which we are only able to interact virtually. Still, relationship building remains an important part of career engagement and success, and it gets better with practice.

            Here are five ways you can strengthen your relationships:

            1. Advocate for Other’s Ideas

            Take the initiative to speak up in support of other team members’ good ideas. Doing so lets others know that the team’s success takes precedence over your needs for personal success. Get behind any colleague’s innovative approach or clever solution and offer whatever help you can give to see it through. Teammates will value your vote of confidence and your support.

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            2. Show Compassion

            If you learn that someone whom you work with has encountered difficult times, reach out. If it’s not someone you know well, a hand-written card expressing your sympathy and hopes for better times ahead could be an initial gesture. If it’s someone with whom you interact regularly, the act could involve offering to take on some of the person’s work to provide a needed reprieve or even bringing in a home-cooked dish as a way to offer comfort. The show of compassion will not go unnoticed, and your relationship building will have found a foothold.

            3. Communicate Regularly

            Make an effort to share any information with team members that will help them do their jobs more effectively. Keeping people in the loop says a lot about your consideration for what others need to deliver their best results.

            Try to discover the preferred mode of communication for each team member. Some people are fine relying on emails; others like to have a phone conversation. And once we can finally return to working together in offices, you may determine that face-to-face updates may be most advantageous for some members.

            4. Ask for Feedback

            Showing your willingness to reach out for advice and guidance will make a positive impression on your boss. When you make it clear that you welcome and can accept pointers, you display candor and trust in what opinions your superior has to offer. Your proclivity towards considering ways of improving your performance and strengthening any working interactions will signal your strong relationship skills.

            If you are in a work environment where you are asked to give feedback, be generous and compassionate. That does not mean being wishy-washy. Try always to give the type of feedback that you wouldn’t mind receiving.

            5. Give Credit Where It’s Due

            Be the worker who remembers to credit staffers with their contributions. It’s a surprisingly rare talent to credit others, but when you do so, they will remember to credit you, and the collective credit your team will accrue will be well worth the effort.

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            How Does Relationship Building Build Careers?

            Once you have strengthened and deepened your relationships, here are some of the great benefits:

            Work Doesn’t Feel So Much Like Work

            According to a Gallup poll, when you have a best friend at work, you are more likely to feel engaged with your job. Work is more fun when you have positive, productive relationships with your colleagues. Instead of spending time and energy overcoming difficult personalities, you can spend time enjoying the camaraderie with colleagues as you work congenially on projects together. When your coworkers are your friends, time goes by quickly and challenges don’t weigh as heavily.

            You Can Find Good Help

            It’s easier to ask for assistance when you have a good working relationship with a colleague. And with office tasks changing at the speed of technology, chances are that you are going to need some help acclimating—especially now that work has gone remote due to the COVID-19 pandemic.

            Much of relationship building rests on your genuine expressions of appreciation toward others. Showing gratitude for another’s help or for their willingness to put in the extra effort will let them know you value them.

            Mentors Come Out of the Woodwork

            Mentors are proven to advance your professional and career development. A mentor can help you navigate how to approach your work and keep you apprised of industry trends. They have a plethora of experience to draw from that can be invaluable when advising you on achieving career success and advancement.

            Mentors flock to those who are skilled at relationship building. So, work on your relationships and keep your eyes peeled for a worthy mentor.

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            You Pull Together as a Team

            Great teamwork starts with having an “abundance mentality” rather than a scarcity mentality. Too often, workers view all projects through a scarcity mentality lens. This leads to office strife as coworkers compete for their piece of the pie. But in an abundance mentality mode, you focus on the strengths that others bring rather than the possibility that they are potential competitors.

            Instead, you can commit relationship building efforts to ensure a positive work environment rather than an adversarial one. When you let others know that you intend to support their efforts and contribute to their success, they will respond in kind. Go, team!

            Your Network Expands and So Does Your Paycheck

            Expand your relationship building scope beyond your coworkers to include customers, suppliers, and other industry stakeholders. Your extra efforts can lead to extra sales, a more rewarding career, and even speedy professional advancement. And don’t overlook the importance of building warm relationships with assistants, receptionists, or even interns.

            Take care to build bridges, not just to your boss and your boss’s boss but with those that work under you as well. You may find that someone who you wouldn’t expect will put in a good word for you with your supervisor.

            Building and maintaining good working relationships with everyone you come in contact with can pay off in unforeseen ways. You never know when that underling will turn out to be the company’s “golden child.” Six years from now you may be turning to them for a job. If you have built up a good, trusting work relationship with others along your way, you will more likely be considered for positions that any of these people may be looking to fill.

            Your Job Won’t Stress You Out

            Study shows that some 83 percent of American workers experience work-related stress.[1] Granted, some of that stress is now likely caused by the new pandemic-triggered workplace adjustments, yet bosses and management, in general, are reportedly the predominant source of stress for more than one-third of workers.

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            Having meaningful connections among coworkers is the best way to make work less stressful. Whether it is having others whom to commiserate with, bounce ideas off, or bring out your best performance, friendships strengthen the group’s esprit de corps and lower the stress level of your job.

            Your Career Shines Bright

            Who would you feel better about approaching to provide a recommendation or ask for promotion: a cold, aloof boss with whom you have only an impersonal relationship or one that knows you as a person and with whom you have built a warm, trusting relationship?

            Your career advancement will always excel when you have a mutual bond of friendship and appreciation with those who can recommend you. Consider the plug you could receive from a supervisor who knows you as a friend versus one who remains detached and only notices you in terms of your ability to meet deadlines or attain goals.

            When people fully know your skills, strengths, personality, and aspirations, you have promoters who will sing your praises with any opportunity for advancement.

            Final Thoughts

            At the end of the day, it is “who you know” not “what you know.” When you build relationships, you build a pipeline of colleagues, work partners, team members, current bosses, and former bosses who want to help you—who want to see you succeed.

            At its core, every business is a people business. Making a point to take the small but meaningful actions that build the foundation of a good relationship can be instrumental in cultivating better relationships at work.

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            Featured photo credit: Adam Winger via unsplash.com

            Reference

            [1] The American Institute of Stress: 42 Worrying Workplace Stress Statistics

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