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

            1The Gentle Art of Saying No 217 Ted Talks for Kids to Inspire Little Minds to Do Big Things 310 Toxic Persons You Should Just Get Rid Of 4Striving Towards Secure Attachment: How to Restructure Your Thoughts 5Being Self Aware Is the Key to Success: How to Boost Self Awareness

            Read Next

            Advertising
            Advertising

            The Gentle Art of Saying No

            The Gentle Art of Saying No

            No!

            It’s a simple fact that you can never be productive if you take on too many commitments — you simply spread yourself too thin and will not be able to get anything done, at least not well or on time.

            Advertising

            But requests for your time are coming in all the time — through phone, email, IM or in person. To stay productive, and minimize stress, you have to learn the Gentle Art of Saying No — an art that many people have problems with.

            Advertising

            What’s so hard about saying no? Well, to start with, it can hurt, anger or disappoint the person you’re saying “no” to, and that’s not usually a fun task. Second, if you hope to work with that person in the future, you’ll want to continue to have a good relationship with that person, and saying “no” in the wrong way can jeopardize that.

            Advertising

            But it doesn’t have to be difficult or hard on your relationship. Here are the Top 10 tips for learning the Gentle Art of Saying No:

            1. Value your time. Know your commitments, and how valuable your precious time is. Then, when someone asks you to dedicate some of your time to a new commitment, you’ll know that you simply cannot do it. And tell them that: “I just can’t right now … my plate is overloaded as it is.”
            2. Know your priorities. Even if you do have some extra time (which for many of us is rare), is this new commitment really the way you want to spend that time? For myself, I know that more commitments means less time with my wife and kids, who are more important to me than anything.
            3. Practice saying no. Practice makes perfect. Saying “no” as often as you can is a great way to get better at it and more comfortable with saying the word. And sometimes, repeating the word is the only way to get a message through to extremely persistent people. When they keep insisting, just keep saying no. Eventually, they’ll get the message.
            4. Don’t apologize. A common way to start out is “I’m sorry but …” as people think that it sounds more polite. While politeness is important, apologizing just makes it sound weaker. You need to be firm, and unapologetic about guarding your time.
            5. Stop being nice. Again, it’s important to be polite, but being nice by saying yes all the time only hurts you. When you make it easy for people to grab your time (or money), they will continue to do it. But if you erect a wall, they will look for easier targets. Show them that your time is well guarded by being firm and turning down as many requests (that are not on your top priority list) as possible.
            6. Say no to your boss. Sometimes we feel that we have to say yes to our boss — they’re our boss, right? And if we say “no” then we look like we can’t handle the work — at least, that’s the common reasoning. But in fact, it’s the opposite — explain to your boss that by taking on too many commitments, you are weakening your productivity and jeopardizing your existing commitments. If your boss insists that you take on the project, go over your project or task list and ask him/her to re-prioritize, explaining that there’s only so much you can take on at one time.
            7. Pre-empting. It’s often much easier to pre-empt requests than to say “no” to them after the request has been made. If you know that requests are likely to be made, perhaps in a meeting, just say to everyone as soon as you come into the meeting, “Look guys, just to let you know, my week is booked full with some urgent projects and I won’t be able to take on any new requests.”
            8. Get back to you. Instead of providing an answer then and there, it’s often better to tell the person you’ll give their request some thought and get back to them. This will allow you to give it some consideration, and check your commitments and priorities. Then, if you can’t take on the request, simply tell them: “After giving this some thought, and checking my commitments, I won’t be able to accommodate the request at this time.” At least you gave it some consideration.
            9. Maybe later. If this is an option that you’d like to keep open, instead of just shutting the door on the person, it’s often better to just say, “This sounds like an interesting opportunity, but I just don’t have the time at the moment. Perhaps you could check back with me in [give a time frame].” Next time, when they check back with you, you might have some free time on your hands.
            10. It’s not you, it’s me. This classic dating rejection can work in other situations. Don’t be insincere about it, though. Often the person or project is a good one, but it’s just not right for you, at least not at this time. Simply say so — you can compliment the idea, the project, the person, the organization … but say that it’s not the right fit, or it’s not what you’re looking for at this time. Only say this if it’s true — people can sense insincerity.

            Featured photo credit: Pexels via pexels.com

            Advertising

            Read Next