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20 Things Parents of Critically Ill Children Want You To Know

20 Things Parents of Critically Ill Children Want You To Know

My husband and I are still married. That’s a mighty bold accomplishment, so we’re told, given the fact that both of our two children are critically ill and have been since birth. For the most part, you wouldn’t know it by passing them on the street. They have what most people consider not to be a disease. They were born with major congenital heart defects, which, collectively, is often referred to as a disease. Congenital heart defects/disease (CHDs) is the leading cause of birth defect-associated illnesses and death in infants, so prevalent, in fact, that 1% of live births in the United States are affected by CHDs every year. This equates to nearly one in one hundred babies. It seems both my children won the genetic lottery, making each of them one in one hundred.

It’s not easy to be a parent. Period. Just ask one. We’ll share stories until the cows come home, and leave again in the morning. However, being the parent of a critically ill child is the most difficult thing I’ve ever done (and am still doing.) I want to ask why? I want to say, “It’s not fair.” I want to get mad. But none of that changes or fixes anything, because it is what it is.

Yes, we have sick children. They’re still too young to understand the unfairness of life. Being their parents, we feel it’s our responsibility to make their world as awesome as possible. We’re not heroes; we’re just doing our jobs. You’d do the same if it were your child. I know it’s difficult to walk in our shoes, however, here are some things about our lives we want you, parents of “healthy” kids, to know.

1. We hope you realize how lucky you are

Look, we don’t want to keep telling you, but, damn, you’re lucky to have healthy children.

2. We’re not judging you or your parenting skills

Okay, maybe sometimes. Like when you’re on your phone… the WHOLE time you’re at the park with your child. There are times when our kids can’t make it outside because they’re too sick. We’d be thrilled to play at the park with our children. In reality, we know everyone’s just trying to do the best they can. Or at least we hope that.

3. We promise we’re not trying to make you feel guilty

That’s probably why we don’t share certain information with you. We’re not trying to one-up you or make you feel weird. We’re not the moral police, trying to teach you lessons about life. We might give a reality check now and then, but, hey, that’s what social media is for. (i.e. #1 above)

4. We don’t think we’re different from other parents

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    Although we look like we have a lot more on our plates (like staying up all night – all the time, shoving tubes up noses and down throats to feed, giving injections when we’re not medical professionals, living in hospitals, etc. etc.) we don’t think we’re different or better parents. You would do all these things for your child if you had to, and we know this.

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    5. (But…) We do get aggravated when you complain about something minor or silly

    There’s no sugar coating this fact: It’s hard to sit back and be silent when you complain about something in your life that would be no big deal in our world. Again, we’re not judging you or your life, it’s just that when you’ve seen/done what we’ve seen/done, the rest is cake. We get it, though, because it’s human nature to complain. It’s just sometimes we want to stop you in the middle of your sentence to give you a quick priority check.

    We don’t usually do this because we’d lose friends fast. But, please, please, please, the next time you’re complaining about something your child did or didn’t do, try to remember there’s someone out there that would give anything to have a child who’s healthy enough to be a little annoying. (Okay, so that’s a small guilt trip.)

    6. We’re not heroes

    We just seem like it because we appear to live in hell and, yet, we still manage to smile. And show up showered, dressed and on-time, at least a few times a week. Okay, so some of us have saved our children’s lives. Yes, it’s true. We’ve done CPR on our son more than once (when he was kind of sort of not technically alive anymore.) We sat next to our daughter when she “crashed” in the hospital. We’ve managed keep a child with only a 50% chance of surviving to age five alive for ten years (and she’s still doing awesome.) Parents of children with chronic illnesses or who are critically/terminally ill do what they do, not because they’re heroes, but because they’re parents. You’d do it, too, if you had to.

    7. Our children are the true heroes

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      We’re not heroes, our children are. Critically ill children are some of the bravest, strongest and most resilient people I know. They’re continually and continuously beaten down by their illnesses, but they refuse to lose the fight. They get up, brush themselves off and keep going. These children can handle surgeries and needles with confidence. They can swallow humongous pills  and nasty-tasting medicine like nobody’s business. They put up a good front and, for the most part, they get through the annoying routine stuff – regular doctor appointments, poking, prodding, etc. – with a smile. Or only a few tears.

      I’ve NEVER seen anyone as resilient as my little 10-year-old girl. She can smile through the worst pain, even when she’s injecting her medication all by herself into her tiny leg (with a one-inch needle.)

      8. We don’t like to compare illnesses/injuries

      People have a terrible habit of comparing their child’s one-time illness or injury to our child’s ordeal. No, your child’s two-day stay in the hospital for slight dehydration caused by the flu couldn’t touch the time my daughter was in the hospital, fighting for her life, because her heart was sick from that same damn flu, BUT, it doesn’t change the fact that your child was in the hospital and you were scared. Your child was sick and you couldn’t help her and that feeling is the same no matter what, whether it’s a broken bone or a broken heart.

      There’s no need to apologize for the lack of tragedy in your situation. We hear this, “Well, it’s nothing like your situation” or “It was really minor compared to your situation” ALL the time. No, it’s not like our situation, thank goodness. But it still sucks when your child is sick or hurt, no matter how minor and we feel bad.  (And to my fellow parents of critically ill children, you shouldn’t be comparing illnesses. NO parent likes seeing their child sick or hurt. You, out of everyone, should be the most empathizing.)

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      9. We have a love/hate relationship with social media.

      Social media is a blessing and a curse for us. On the one hand, we love being able to share our good times, our victories (and we have some weird victories), and health news. We also find it important to share when something bad has happened. It’s a fast way to inform people of a complication or a trip to the hospital. It’s also the best way for people to participate in the popular new methods of fundraising, like crowdfunding, which is done online. Believe it or not, we really enjoy seeing posts about your life and your children.

      On the other hand, it’s really difficult to see your posts because we’re seeing new homes, new furniture, new cars, perfect kids, healthy kids playing every sport, perfect vacations – you get the idea. We’re seeing life moving forward.

      10. We’re struggling financially

      This is a big one. Nobody understands this. If we had a nickel for every time we heard, “Don’t you have insurance?” YES! We have insurance. Good insurance. We also have a critically ill child who reaches the maximum coverage by March every year, who sees specialists, who’s on fifteen different medications (some of which aren’t covered), and so on. We miss more work than most people, which leads to layoffs, job loss (yes, they can let go of you – they’ll just give another reason), or serious decline in income.

      And before you even think it…this has nothing to do with the president or politics or healthcare policies. Our child is so sick, we’ll max out every plan, with or without Obamacare. In fact, we (parents of sick children) don’t even have the energy to talk healthcare to people who don’t have health issues in their families.

      We work hard and we don’t expect handouts, but there are lots of times when donations are literally life-saving.

      11. We’re happy your children are healthy

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        I promise we are. We may appear to be envious, and, at times, we are. We’d give anything to have a taste of the healthy life, but it ain’t happening. We still support your kids, cheer for your kids and love your kids, and we feel sad when they get hurt or sick (even with that nasty flu that’s going around.)

        12. We have a different version of normal

        My husband and I learned long ago that “It is what it is”. We’ve tried to create a life for our family that is as happy, fun and as real as possible…within the parameters we’ve been given. Our kids are considered critically ill, but they have healthy friends and “hospital” friends. That’s just part of who they are. There’s no difference in their eyes. The hospital friends understand the bad days; the healthy friends, while they’re supportive of the bad days, they’re there on the good days, giving our children exactly what they need: normality. If such a thing exists.

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        13. We break down

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          You just don’t see it. We’re not trying to hide our emotions. It’s just we don’t often open the flood gates out in public. Raising very sick children is HARD. Watching your child go through so much, seeing them in pain, knowing they feel so sick and there’s nothing you can do to help them is one of the worst feelings a parent can have. We feel like failures as parents. All we can do is try our best to comfort them, but sometimes, not even our love helps. So, yes, once in a while, we lose it. Think: The Fault In Our Stars type of sob session. At least once a month for most moms I know. It’s just so damn difficult to be so damn incapable of mothering.

          14. Yes, we probably need help, and, no, we probably won’t ask

          Forget the financials for a second, even though most of us are barely surviving because we’re so overwhelmed with medical and pharmacy bills.

          We’re trying to keep our critically ill child well (maybe even alive), while doing all the normal parent stuff. We’ll hold babies and oxygen tanks while cooking dinner. We’re folding laundry while we’re making sure the tube in the nose, which leads to the stomach, isn’t kinked so the formula (because our baby can’t be breastfed) will make it into the baby’s tummy. We’ll have one child at home for any  number of days, while the other is in the hospital. There are always other things, life-altering things, going on at the same time.

          Everything you’re doing that is typical for your family is a hundred times more difficult when you have a critically ill child. I know, I know. Parents of healthy kids might roll their eyes at this one, thinking we’re whining or complaining. We’re not. It’s just a fact. While your kid was playing soccer last night, ours was having issues breathing.

          Do we need help? Totally. Cleaning the house, doing the laundry, cooking… all those things take a back seat more often than not. You have no idea how freaking awesome it is when someone brings dinner or offers up a cleaning service.

          15. We’re scared that our children will die

          Every single day we have to swallow that fear and go on with our day. And we work hard to never, ever let our kids know about that fear.

          16. Some of us are so affected by our situation we actually have PTSD

          (Post traumatic stress disorder) Yes, having a really sick kiddo is THAT hard.

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          17. We want to be social

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            We’d like to go out with you. We’d like to go to parties or dinner or concerts or whatever. Anything with other adults. But…our children are, well, you know. And we can’t get a babysitter. Okay, we won’t get a babysitter. Are you kidding me? How on earth can we leave our child – who requires life-saving medications, who may stop breathing at any point, requiring CPR, who has special health needs – with anyone but us? We can’t. So we don’t. Ever.

            We just don’t go out. Thanks for asking, though.

            18. School is a nightmare

            Emergency medical plans, medication lists, two hundred and sixty seven hours spent filling out forms, faxing back and forth with doctor’s offices, making sure the schools have everything they need, prepping the teachers, checking the IEPs, more forms (PE!!). And the field trips. OMG.

            Can’t we just have one normal day like you guys where we just go through the loop and drop off?

            19. Truth? We HATE the perfect attendance awards at school

            Hate! With a passion. Because you know what that means? It means someone sent their child to school sick – at least once. And that pisses us off to no end. Look, we don’t want to pull the “we’re special” card, but, well, we are. Our children have crappy immune systems. Hell, a common cold can send my daughter to the hospital with a life-threatening case of pneumonia within hours. We don’t want to keep our children in a bubble because that’s not real life, however, we don’t like to purposely send them into a cesspool of germs either.

            Please! We’re begging you. No matter what the reason, if your child is sick, keep him/her home. If not for our children, do it for the other children and the teacher. It’s just not fair. I’m happy to print a certificate at the end of the year for good parenting.

            20. It’s all about perspective

            Life is very difficult with critically ill children. There’s no vacation from the illness. As a parent, there’s no break from the sadness we feel as we witness our child sick or in pain. We may feel like things will never get better, but it’s all about perspective. Most of us learned long ago to change our perspective. This is our life. We’re blessed. We’re resilient. Our children may have an illness, but they’re still rock stars in our eyes. They will overcome many challenges. Not all of them, though. And that’s perfectly fine with us. They’ve already overcome their biggest challenge just by being here with us.

            photo credit: Pinterest

            Featured photo credit: Christiaan Triebert via flickr.com

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            Missy Mitchell

            Author, Artist, Advocate

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            Last Updated on March 14, 2019

            7 Questions to Ask in a Job Interview That Will Impress the Interviewer

            7 Questions to Ask in a Job Interview That Will Impress the Interviewer

            Recruiters might hold thousands of interviews in their careers and a lot of them are reporting the same thing—that most candidates play it safe with the questions they ask, or have no questions to ask in a job interview at all.

            For job applicants, this approach is crazy! This is a job that you’re going to dedicate a lot of hours to and that might have a huge impact on your future career. Don’t throw away the chance to figure out if the position is perfect for you.

            Here are 7 killer questions to ask in a job interview that will both impress your counterpart and give you some really useful insights into whether this job will be a dream … or a nightmare.

            1. What are some challenges I might come up against this role?

            A lesser candidate might ask, “what does a typical day look like in this role?” While this is a perfectly reasonable question to ask in an interview, focusing on potential challenges takes you much further because it indicates that you already are visualizing yourself in the role.

            It’s impressive because it shows that you are not afraid of challenges, and you are prepared to strategize a game plan upfront to make sure you succeed if you get the job.

            It can also open up a conversation about how you’ve solved problems in the past which can be a reassuring exercise for both you and the hiring manager.

            How it helps you:

            If you ask the interviewer to describe a typical day, you may get a vibrant picture of all the lovely things you’ll get to do in this job and all the lovely people you’ll get to do them with.

            Asking about potential roadblocks means you hear the other side of the story—dysfunctional teams, internal politics, difficult clients, bootstrap budgets and so on. This can help you decide if you’re up for the challenge or whether, for the sake of your sanity, you should respectfully decline the job offer.

            2. What are the qualities of really successful people in this role?

            Employers don’t want to hire someone who goes through the motions; they want to hire someone who will excel.

            Asking this question shows that you care about success, too. How could they not hire you with a dragon-slayer attitude like that?

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            How it helps you:

            Interviewers hire people who are great people to work with, but the definition of “great people” differs from person to person.

            Does this company hire and promote people with a specific attitude, approach, worth ethic or communication style? Are the most successful people in this role strong extroverts who love to talk and socialize when you are studious and reserved? Does the company reward those who work insane hours when you’re happiest in a more relaxed environment?

            If so, then this may not be the right match for you.

            Whatever the answer is, you can decide whether you have what it takes for the manager to be happy with your performance in this role. And if the interviewer has no idea what success looks like for this position, this is a sign to proceed with extreme caution.

            3. From the research I did on your company, I noticed the culture really supports XYZ. Can you tell me more about that element of the culture and how it impacts this job role?

            Of course, you could just ask “what is the culture like here? ” but then you would miss a great opportunity to show that you’ve done your research!

            Interviewers give BIG bonus point to those who read up and pay attention, and you’ve just pointed out that (a) you’re diligent in your research (b) you care about the company culture and (c) you’re committed to finding a great cultural fit.

            How it helps you:

            This question is so useful because it lets you pick an element of the culture that you really care about and that will have the most impact on whether you are happy with the organization.

            For example, if training and development is important to you, then you need to know what’s on offer so you don’t end up in a dead-end job with no learning opportunities.

            Companies often talk a good talk, and their press releases may be full of shiny CSR initiatives and all the headline-grabbing diversity programs they’re putting in place. This is your opportunity to look under the hood and see if the company lives its values on the ground.

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            A company that says it is committed to doing the right thing by customers should not judge success by the number of up-sells an employee makes, for instance. Look for consistency, so you aren’t in for a culture shock after you start.

            4. What is the promotion path for this role, and how would my performance on that path be measured?

            To be clear, you are not asking when you will get promoted. Don’t go there—it’s presumptuous, and it indicates that you think you are better than the role you have applied for.

            A career-minded candidate, on the other hand, usually has a plan that she’s working towards. This question shows you have a great drive toward growth and advancement and an intention to stick with the company beyond your current state.

            How it helps you:

            One word: hierarchy.

            All organizations have levels of work and authority—executives, upper managers, line managers, the workforce, and so on. Understanding the hierarchical structure gives you power, because you can decide if you can work within it and are capable of climbing through its ranks, or whether it will be endlessly frustrating to you.

            In a traditional pyramid hierarchy, for example, the people at the bottom tend to have very little autonomy to make decisions. This gets better as you rise up through the pyramid, but even middle managers have little power to create policy; they are more concerned with enforcing the rules the top leaders make.

            If having a high degree of autonomy and accountability is important to you, you may do better in a flat hierarchy where work teams can design their own way of achieving the corporate goals.

            5. What’s the most important thing the successful candidate could accomplish in their first 3 months/6 months/year?

            Of all the questions to ask in a job interview, this one is impressive because it shows that you identify with and want to be a successful performer, and not just an average one.

            Here, you’re drilling down into what the company needs, and needs quite urgently, proving that you’re all about adding value to the organization and not just about what’s in it for you.

            How it helps you:

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            Most job descriptions come with 8, 10 or 12 different job responsibilities and a lot of them with be boilerplate or responsibilities that someone in HR thinks are associated with this role. This question gives you a better sense of which responsibilities are the most important—and they may not be what initially attracted you to the role.

            If you like the idea of training juniors, for example, but success is judged purely on your sales figures, then is this really the job you thought you were applying for?

            This question will also give you an idea of what kind of learning curve you’re expected to have and whether you’ll get any ramp-up time before getting down to business. If you’re the type of person who likes to jump right in and get things done, for instance, you may not be thrilled to hear that you’re going to spend the first three months shadowing a peer.

            6. What do you like about working here?

            This simple question is all about building rapport with the interviewer. People like to talk about themselves, and the interviewer will be flattered that you’re interested in her opinions.

            Hopefully, you’ll find some great connection points that the two of you share. What similar things drive you head into the office each day? How will you fit into the culture?

            How it helps you:

            You can learn a lot from this question. Someone who genuinely enjoys his job will be able to list several things they like, and their answers will sound passionate and sincere. If not….well, you might consider that a red flag.

            Since you potentially can learn a lot about the company culture from this question, it’s a good idea to figure out upfront what’s important to you. Maybe you’re looking for a hands-off boss who values independent thought and creativity? Maybe you work better in environments that move at a rapid, exciting pace?

            Whatever’s important to you, listen carefully and see if you can find any common ground.

            7. Based on this interview, do you have any questions or concerns about my qualifications for the role?

            What a great closing question to ask in a job interview! It shows that you’re not afraid of feedback—in fact, you are inviting it. Not being able to take criticism is a red flag for employers, who need to know that you’ll act on any “coaching moments” with a good heart.

            As a bonus, asking this question shows that you are really interested in the position and wish to clear up anything that may be holding the company back from hiring you.

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            How it helps you:

            What a devious beast this question is! On the surface, it looks straightforward, but it’s actually giving you four key pieces of information.

            First, is the manager capable of giving you feedback when put on the spot like this? Some managers are scared of giving feedback, or don’t think it’s important enough to bother outside of a formal performance appraisal. Do you want to work for a boss like that? How will you improve if no one is telling you what you did wrong?

            Second, can the manager give feedback in a constructive way without being too pillowy or too confrontational? It’s unfair to expect the interviewer to have figured out your preferred way of receiving feedback in the space of an interview, but if she come back with a machine-gun fire of shortcomings or one of those corporate feedback “sandwiches” (the doozy slipped between two slices of compliment), then you need to ask yourself, can you work with someone who gives feedback like that?

            Third, you get to learn the things the hiring manager is concerned about before you leave the interview. This gives you the chance to make a final, tailored sales pitch so you can convince the interviewer that she should not be worried about those things.

            Fourth, you get to learn the things the hiring manager is concerned about period. If turnover is keeping him up at night, then your frequent job hopping might get a lot of additional scrutiny. If he’s facing some issues with conflict or communication, then he might raise concerns regarding your performance in this area.

            Listen carefully: the concerns that are being raised about you might actually be a proxy for problems in the wider organization.

            Making Your Interview Work for You

            Interviews are a two-way street. While it is important to differentiate yourself from every other candidate, understand that convincing the interviewer you’re the right person for the role goes hand-in-hand with figuring out if the job is the right fit for you.

            Would you feel happy in a work environment where the people, priorities, culture and management style were completely at odds with the way you work? Didn’t think so!

            More Resources About Job Interviews

            Featured photo credit: Amy Hirschi via unsplash.com

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