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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 May 20, 2019

            How to Live in the Moment and Stop Worrying About the Past or Future

            How to Live in the Moment and Stop Worrying About the Past or Future

            We sometimes hear people talk about the importance of living in the moment. We might hear about the different ways it will benefit us. It all sounds wonderful, but how exactly can we live in the moment when our mind is constantly racing?

            In this article, we’ll discuss some of the benefits of living in the moment you may not be aware of. Then we’ll look at some of the obstacles, and why we worry. Finally, and most importantly, I’ll show you how to live in the moment and stop worrying using some simple practices that you can easily incorporate into your busy schedule.

            The result: a happier and more fulfilling life.

            Why Live in the Moment?

            “The secret of health for both mind and body is not to mourn for the past, worry about the future, or anticipate troubles, but to live in the present moment wisely and earnestly.” – Buddha

            Living in the moment has innumerable benefits. Here are just a few that will enhance your life tremendously:

            Better Health

            By reducing stress and anxiety, you avoid many of the associated health consequences, such as high blood pressure, heart disease, and obesity. Studies have shown that being present can also improve psychological well-being.[1]

            Improve Your Relationships

            Have you ever been with someone who is physically present, but mentally he’s a million miles away?

            Being with unavailable people is a struggle, and makes relationships with them extremely difficult.

            How about being with someone who is fully present? We enjoy being with him because we can make a much deeper connection with him.

            By living in the moment, you can be that person other people enjoy being with, and you make relationships much easier.

            Greater Self-Control

            You have greater control over your mind, body, and emotions. Imagine how much better your life would be if it weren’t at the mercy of a racing mind, and unpredictable emotions. You would certainly be more at peace, and much happier.[2]

            Why Do We Worry?

            Before we answer this question, it’s important to distinguish between worry and concern.

            When we are concerned about something, we are more likely dealing with a real problem with realistic solutions. Then once we do whatever we can to address the problem, we’re willing to live with the outcome.

            Worrying, on the other hand, involves unrealistic thinking. We may worry about a problem that doesn’t really exist, or dwell on all the bad things that can happen as a result. Then, we feel unable to deal with the outcome. Either way, we have difficulty dealing with uncertainty, which is a normal part of life.

            Certainly, some of our problems may not have desirable outcomes, such as a serious health issue. Some problems may be beyond our control, such as civil unrest or economic downturn. In such cases, it can be hard to avoid worrying, but not impossible.

            We sometimes worry when we don’t know how to deal with a problem. For example, have you ever received a letter from the IRS telling you that you owe more money than you thought, and don’t have the funds to pay it? This is enough to scare anyone who is not familiar with taxes.

            How to Live in the Moment

            Step 1: Overcome Worrying

            In order to overcome worrying, we need to do two things:

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            Learn How to Live in the Moment

            By living in the moment, you calm your mind, and are able to see more clearly.

            The reason some problems seem so daunting is that our mind is racing so fast that we cannot see things as they truly are. So we make up a bunch of possible scenarios in our mind, most of which are unlikely to come true.

            In addition to seeing more clearly, living in the moment will help us think more realistically. Unrealistic thinking is fueled by confusion and uncontrolled emotions. Calming your mind will reduce confusion and calm your emotions.

            Learn to Focus on Solutions Instead of Problems

            Some people tend to be more solution-oriented, and others more problem-oriented. Some of the factors that may determine this are gender, upbringing, and education.

            People with higher educations tend to be problem-solvers. That is what their years of education train them to do. In addition, their jobs probably reinforce this way of thinking.

            If you’re not problem-solving oriented, don’t worry. You can train yourself to worry less. We’ll discuss that soon.

            Step 2: Identify Obstacles to Living in the Moment

            In today’s busy world, it can be a challenge to live in the moment. The reasons revolve around how our mind works, and outside influences.

            Racing Mind

            Many busy people have a racing mind that never seems to slow down. Their mind gets so agitated from too much sensory stimulation.

            You see, anything that stimulates any of our five senses (sight, sound, taste, touch, and smell) will trigger a thought, and that thought leads to another, and then another, and so on.

            If you have a busy life, all your activities will overstimulate your mind, and make it seemingly impossible to slow it down. And an agitated mind wants to go to another place and time.

            Unpleasant Situations and Troublesome Past

            None of us want to be in unpleasant situations, or remember those of the past. They can bring up painful emotions, which we don’t want to feel.

            So how do most people cope with painful emotions?

            By doing whatever we can to avoid them, and we can avoid them by taking our mind to another place and time where things are more pleasant.

            In other words, we avoid living in the present moment.

            Some people resort to doing things that stimulate sensory pleasure, such as eating, alcohol or sex. Others will consume substances that dull their mind, and keep them from thinking about unpleasant or stressful situations.

            A Wandering Mind

            From the moment we are born (likely sooner) until the time we die, our body and mind are active performing some function. So it’s natural for our mind to have some level of activity, whether conscious or unconscious.

            Generally, a wandering mind is unproductive. As noted above, one thought starts an endless chain of thoughts. The reason is that one thought reminds us of something else, and this process can go on until we need our mind to perform a specific function, or until we get distracted with something else.

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            Now, there are times when a wandering mind can be productive, such as when creating works of art, or trying to find creative solutions to problems. In such cases, we need our mind to explore different possibilities.[3]

            Outside Influences

            Most of us are not fully aware of how our environment and social norms influence our thinking and behavior. People and institutions are constantly competing for our attention. The news media draw our attention to the past, and advertising usually to the future.[4]

            Many people around us who dwell on the past or future try to draw us to their way of thinking. Even the whole concept of the American dream is geared toward the future. It tells us that if we acquire things like a good career, family, and house, then we’ll be happy.

            Step 3: Practice Mindfulness

            So how can we live in the moment in a world that is constantly trying to draw our attention to the past and future?

            Before we get into concrete actions you can take, it’s important to understand what mindfulness is. You’ve probably heard the term before, but may not fully understand what it means.

            Understand Mindfulness

            The concept of mindfulness is actually quite simple. To be mindful IS to live in the moment.

            When you are mindful, your attention is focused on what is happening in the present moment. When you are mindful, you are fully in touch with reality because the present moment is where reality is taking place.

            You are aware of what is happening in your body, mind, emotions, and the world around you. This is different than thinking about these things. To develop greater understanding, you don’t have to think about them so much, but rather just observe them.

            This may be counter-intuitive to many people, especially intellectuals, because they’re so used to using logic to develop greater understanding. With mindfulness, we calm our mind and emotions so we can see clearer. Then much of our understanding will come from simply observation. When we develop mindfulness, we literally expand our awareness.

            To develop mindfulness, we need to train ourselves to observe things more objectively, that is, without our emotions or preconceived ideas influencing our views.

            You’d be surprised to find out just how much your emotions and past experiences influence your judgments. What many of us do, including intellectuals, is make a quick judgment about a person or situation, then add the reasoning afterwards. That is not logic, but rather rationalization.

            When you are mindful, you reserve judgment until you have more information. Notice how I said “more information,” and not “complete information.” It is impossible to have complete information about something because there are infinite numbers of factors affecting it. So the best thing to do is be as objective as possible, and always be open to new information.

            Viewing the world in this manner can be a challenge, and takes some practice to overcome years of habitual thinking. But it can make our lives infinitely more fulfilling, as we’ll be able to make much better decisions that will result in real happiness and inner peace.

            So if you’re ready to live a better life, read on for some simple mindfulness practices that you can incorporate into your busy life to help you live in the moment, that is, reality.

            You don’t have to do all of them, but rather choose the ones that appeal to you, and suit your lifestyle.

            Mindfulness Meditation

            Mindfulness meditation is the mainstay of developing mindfulness and living in the moment. To practice mindfulness meditation, all you really have to do is sit quietly and follow your breathing. When your mind wanders off, just bring it back to your breath.

            Notice how your lungs expand with each in-breath, and contract with each out-breath. Let your breathing become relaxed and natural.

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            You don’t have to do it perfectly. The idea is to give your mind a rest from the constant sensory stimulation of all your activities, and just allow it to settle down naturally. Start with about 5 to 10 minutes per day and work your way up to about 20 minutes or longer.

            This practice is highly effective, and can have both short-term and long-term benefits.

            If you want to learn more about mindfulness meditation, take a look at this article: How to Practice Mindful Meditation to Calm Your Thoughts

            Also, there are many good books on the market that explain the concepts and techniques in greater detail. Some examples are

            Mindful Breathing

            While this may sound the same as mindfulness meditation, all you’re really doing is taking short breaks occasionally (10 to 15 seconds) to observe your breathing. Stop whatever you’re doing, and take a few mindful breaths, then resume your activity. That’s it.

            You can do mindful breathing at any time of the day during your busy schedule. What it does is interrupt the acceleration of your mind. It is like taking your foot off the accelerator while driving. It’s a nice refreshing break you can take without anyone noticing.

            Here’re some breathing exercises you can try to learn: 5 Breathing Exercises for Anxiety (Simple and Calm Anxiety Quickly)

            Mindful Walking

            Walking is an activity that you perform several times throughout the day. We often think we’re being productive by texting, or calling someone while walking. But are we really?

            Instead of getting on your cell phone, or letting your mind wander off, why not use your walking for training yourself to live in the moment?

            Mindful walking is similar to mindful breathing. But instead of focusing on your breath, focus on your walking. Pay attention to each footstep. Also, notice the different motions of your arms, legs, and torso. When your mind wanders off, just bring your attention back to your walking.

            You can even make a meditation out of walking. That is, go walking for a few minutes outside. Start by slowing down your pace. If you slow down your body, your mind will follow.

            In addition to paying attention to your walking, notice the trees, sunshine, and critters. A mindful walk is enjoyable, and can really help your mind settle down.

            Mindful Eating

            Eating is an activity that most of us perform mindlessly. The reason is that it doesn’t require your attention to perform. So what many of us do is try to multitask while we eat. We may talk on the phone, text, watch TV, or even hold a meeting.

            The problem with not eating mindfully is that we don’t eat what our body and mind need to perform at an optimal level. We may eat unhealthy foods, or too much. This can lead to various health problems, especially as we get older.

            Mindful eating has many health benefits, such as reduced food cravings, better digestion, and even weight loss.[5]

            So how do you eat mindfully? Start by slowing down, and avoid the temptation to distract yourself with another activity. Here are 3 different aspects of eating where you can practice mindfulness:

            • Eating itself: Focus your attention on choosing a portion of food to insert into your mouth. Notice the smell, flavor, and texture as you chew it; then finally swallow it. As with following your breath during meditation, pay close attention to every aspect of eating.
            • Choice of foods: Although you’ve already chosen your food before you have begun eating, you can still take the opportunity to contemplate your choices. Think about the nutrients your body needs to sustain itself. Ask yourself, “Is this what my body and mind need to be healthy, and perform at an optimal level?” “Is it sufficient, or too much?” By asking yourself these questions, you will be more inclined to make better choices in the future.
            • Contemplating the sources: Most of us don’t think about all the work it takes to provide us with the food we eat. While you’re eating, consider all the work by the farmer, shipping company, and the grocery store. These are real people who worked hard to provide you with the food necessary for your survival.

            You can find more tips about mindful eating here: 7 Simple Steps to Mindful Eating

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            Mindful Activities

            Choose an activity that you perform regularly, such as washing dishes. Focus all your attention on this activity, and resist the temptation to let your mind wander, or get distracted. When it does, then just bring your attention back to washing dishes.

            Notice some of the specific movements, or sensations of washing dishes, such as how the soapy water feels on your hands, the circular motion of scrubbing the dish, or the rinsing. You’d be surprised at how such a mundane activity can truly expand your awareness.

            You can choose any activity you like, such as ironing, folding clothes, mowing the lawn, or showering. Over time, you will begin doing all these activities with greater mindfulness.

            Bonus Suggestion

            Here is one activity that is not generally considered a mindful activity. It is physical training. For those of you who already workout, it may be easy to see how physical training requires you to live in the moment.

            Here’s how it works:

            In order to perform an exercise to get the desired benefit, you need to use a proper technique. In order to use the proper technique, you need to pay close attention to how you are doing the exercise. In other words, you need to be fully present in the moment.

            Another aspect of training that helps you live in the moment is tuning into what is happening in your body. First, during exercising, you need to pay close attention to how your body feels. Are you exercising hard enough, or not enough?

            There are times to go easy, such as during warm-up exercises; and times to push yourself hard, such as when you’re warmed up and want to stimulate growth.

            Second, when you’re not in the gym training, you need to pay close attention to the signals your body is sending you. What nutrients and how much do you need to consume to support your training? How much rest do you need?

            By tuning in to your body, you force yourself to be in the moment. So, physical training done properly is just about as effective as meditation, or any mindful activity, for developing mindfulness. It’s also great for your health.

            Final Thoughts

            Practicing mindfulness is like regularly putting small amounts of change in a jar. They will all add up over time. And this will add up to greater peace and happiness.

            Remember, you don’t have to do the mindfulness practices perfectly to get the benefits. All you have to do is keep bringing your mind back to the present moment when it wanders off.

            Practicing mindfulness may be a bit challenging in the beginning; but I can assure you, it will get easier fairly quickly.

            The benefits of living in the moment are well within your reach, no matter how much your mind is racing. If you stick with these mindfulness practices, you too will learn how to live in the moment and stop worrying; and when you do, a whole new world will open up for you. This is what Zen master Thich Nhat Hanh calls the ultimate reality.

            Featured photo credit: Priscilla Du Preez via unsplash.com

            Reference

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