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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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            Last Updated on September 18, 2020

            13 Helping Points When Things Don’t Go Your Way

            13 Helping Points When Things Don’t Go Your Way

            For the original article by Celestine: 13 Helping Points When Things Don’t Go Your Way

            “We all have problems. The way we solve them is what makes us different.” ~Unknown

            “It’s not stress that kills us, it is our reaction to it.” – Hans Selye

            Have you ever experienced moments when things just don’t go your way? For example, losing your keys, accidentally spilling your drink, waking up late, missing your buses/trains, forgetting to bring your things, and so on?

            You’re not alone. All of us, myself included, experience times when things don’t go as we expect.

            Here is my guide on how to deal with daily setbacks.

            1. Take a step back and evaluate

            When something bad happens, take a step back and evaluate the situation. Some questions to ask yourself:

            1. What is the problem?
            2. Are you the only person facing this problem in the world today?
            3. How does this problem look like at an individual level? A national level? On a global scale?
            4. What’s the worst possible thing that can happen to you as a result of this?
            5. How is it going to impact your life in the next 1 year? 5 years? 10 years?

            Doing this exercise is not to undermine the problem or disclaiming responsibility, but to consider different perspectives, so you can adopt the best approach for it. Most problems we encounter daily may seem like huge issues when they crop up, but most, if not all, don’t have much impact in our life beyond that day.

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            2. Vent if you have to, but don’t linger on the problem

            If you feel very frustrated and need to let off some steam, go ahead and do that. Talk to a friend, complain, crib about it, or scream at the top of your lungs if it makes you happy.

            At the same time, don’t get caught up with venting. While venting may temporarily relieve yourself, it’s not going to solve the problem ultimately. You don’t want to be an energy vampire.

            Vent if there’s a need to, but do it for 15 to 20 minutes. Then move on.

            3. Realize there are others out there facing this too

            Even though the situation may be frustrating, you’re not alone. Remember there are almost 7 billion people in the world today, and chances are that other people have faced the same thing before too. Knowing it’s not just you helps you to get out of a self-victimizing mindset.

            4. Process your thoughts/emotions

            Process your thoughts/emotions with any of the four methods:

            1. Journal. Write your unhappiness in a private diary or in your blog. It doesn’t have to be formal at all – it can be a brain dump on rough paper or new word document. Delete after you are done.
            2. Audio taping. Record yourself as you talk out what’s on your mind. Tools include tape recorder, your PC (Audacity is a freeware for recording/editing audio) and your mobile (most mobiles today have audio recording functions). You can even use your voice mail for this. Just talking helps you to gain awareness of your emotions. After recording, play back and listen to what you said. You might find it quite revealing.
            3. Meditation. At its simplest form, meditation is just sitting/lying still and observing your reality as it is – including your thoughts and emotions. Some think that it involves some complex mambo-jumbo, but it doesn’t.
            4. Talking to someone. Talking about it with someone helps you work through the issue. It also gets you an alternate viewpoint and consider it from a different angle.

            5. Acknowledge your thoughts

            Don’t resist your thoughts, but acknowledge them. This includes both positive and negative thoughts.

            By acknowledging, I mean recognizing these thoughts exist. So if say, you have a thought that says, “Wow, I’m so stupid!”, acknowledge that. If you have a thought that says, “I can’t believe this is happening to me again”, acknowledge that as well.

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            Know that acknowledging the thoughts doesn’t mean you agree with them. It’s simply recognizing the existence of said thoughts so that you can stop resisting yourself and focus on the situation on hand.

            6. Give yourself a break

            If you’re very stressed out by the situation, and the problem is not time sensitive, then give yourself a break. Take a walk, listen to some music, watch a movie, or get some sleep. When you’re done, you should feel a lot more revitalized to deal with the situation.

            7. Uncover what you’re really upset about

            A lot of times, the anger we feel isn’t about the world. You may start off feeling angry at someone or something, but at the depth of it, it’s anger toward yourself.

            Uncover the root of your anger. I have written a five part anger management series on how to permanently overcome anger.

            After that, ask yourself: How can you improve the situation? Go to Step #9, where you define your actionable steps. Our anger comes from not having control on the situation. Sitting there and feeling infuriated is not going to change the situation. The more action we take, the more we will regain control over the situation, the better we will feel.

            8. See this as an obstacle to be overcome

            As Helen Keller once said,

            “Character cannot be developed in ease and quiet. Only through experiences of trial and suffering can the soul be strengthened, vision cleared, ambition inspired and success achieved.”

            Whatever you’re facing right now, see it as an obstacle to be overcome. In every worthy endeavor, there’ll always be countless obstacles that emerge along the way. These obstacles are what separate the people who make it, and those who don’t. If you’re able to push through and overcome them, you’ll emerge a stronger person than before. It’ll be harder for anything to get you down in the future.

            9. Analyze the situation – Focus on actionable steps

            In every setback, there are going to be things that can’t be reversed since they have already occurred. You want to focus on things that can still be changed (salvageable) vs. things that have already happened and can’t be changed. The only time the situation changes is when you take steps to improve it. Rather than cry over spilt milk, work through your situation:

            1. What’s the situation?
            2. What’s stressing you about this situation?
            3. What are the next steps that’ll help you resolve them?
            4. Take action on your next steps!

            After you have identified your next steps, act on them. The key here is to focus on the actionable steps, not the inactionable steps. It’s about regaining control over the situation through direct action.

            10. Identify how it occurred (so it won’t occur again next time)

            A lot of times we react to our problems. The problem occurs, and we try to make the best out of what has happened within the context. While developing a healthy coping mechanism is important (which is what the other helping points are on), it’s also equally important, if not more, to understand how the problem arose. This way, you can work on preventing it from taking place next time, vs. dealing reactively with it.

            Most of us probably think the problem is outside of our control, but reality is most of the times it’s fully preventable. It’s just a matter of how much responsibility you take over the problem.

            For example, for someone who can’t get a cab for work in the morning, he/she may see the problem as a lack of cabs in the country, or bad luck. However, if you trace to the root of the problem, it’s probably more to do with (a) Having unrealistic expectations of the length of time to get a cab. He/she should budget more time for waiting for a cab next time. (b) Oversleeping, because he/she was too tired from working late the previous day. He/she should allocate enough time for rest next time. He/she should also pick up better time management skills, so as to finish work in lesser time.

            11. Realize the situation can be a lot worse

            No matter how bad the situation is, it can always be much worse. A plus point vs. negative point analysis will help you realize that.

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            12. Do your best, but don’t kill yourself over it

            No matter how bad your situation may seem, do your best, but don’t kill yourself over it. Life is too beautiful to worry so much over daily issues. Take a step back (#1), give yourself a break if you need to (#6), and do what you can within your means (#9). Everything else will unfold accordingly. Worrying too much about the outcome isn’t going to change things or make your life any better.

            13. Pick out the learning points from the encounter

            There’s something to learn from every encounter. What have you learned from this situation? What lessons have you taken away?

            After you identify your learning points, think about how you’re going to apply them moving forward. With this, you’ve clearly gained something from this encounter. You’ve walked away a stronger, wiser, better person, with more life lessons to draw from in the future.

            Get the manifesto version of this article: [Manifesto] What To Do When Things Don’t Go Your Way

            Featured photo credit: Alice Donovan Rouse via unsplash.com

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