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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 November 17, 2019

            40 Amazing Date Ideas for Valentine’s Day

            40 Amazing Date Ideas for Valentine’s Day

            With Valentine’s Day just around the corner, starry-eyed lovers worldwide are getting ready to celebrate their love and planning the perfect date for their partner. However, there are many loving, caring, and generally great people out there who simply can’t think of a single romantic thing to do, let alone create the ultimate Valentine’s Day experience for their loved one. If you are looking for some great date ideas that will put a smile on your partner’s face and melt their heart, then just keep on reading. I’ve got a pretty big list of choices for you. Here are some great ideas ranging from tried and true classics, to the fun and slightly unconventional.

            1. Rom-coms marathon

            This is a very basic yet highly romantic way of spending the day with your partner. Take a few days to prepare the right playlist and create a romantic atmosphere at home. You can order out some food, open a bottle of wine and cuddle up in front of the TV.

            2. Recreate your first date

            Rated pretty high on the “romantic gestures scale,” this is guaranteed to impress your significant other. It requires a good memory and a bit of work to make it just right, but it is well worth it. Walk down the same streets where you first kissed and have a couple of drinks in that old coffee shop where you had your first drinks together. Don’t be afraid to spend a bit extra and add a little romantic gift into the mix.

            3. Cook for your loved one

            Start researching good recipes for a romantic dinner for two, get the right ingredients and prepare a couple of practice dinners to make sure you’ve got your technique and presentation down pat. Cooking for someone can be a big turn on and you can create some incredible meals without spending too much money. Take it up a notch by dressing classy, decorating your dining room and presenting your partner with a printed menu.

            4. Organize your very own ancient Greek party

            Here’s another one of those creative date ideas for the stay-at-home couple. The ancient Greek private party can be a very fun and erotic experience. You can decorate by using big bowls full of grapes, spreading some white sheets all over the place, placing some plastic vines here and there, putting up a few posters depicting Greek parties and having plenty of wine lying around. Wear nothing but light sheets or costumes and channel some of that hot-blooded Greek spirit.

            5. A romantic weekend getaway in the mountains

            For those looking for a change of scenery and an escape from the busy city, there is nothing better than a quiet, romantic weekend in the mountains. There are plenty of fun activities like skiing that will keep you active. You can have fun making a snowman or engaging in a snowball fight, and, of course, there is plenty of privacy and great room service waiting for you back at your room.

            6. Fun day at the shooting range

            A bit unconventional but an incredibly fun and exciting date that will get your blood pumping and put a huge smile on your faces. Try out a number of guns and have a bit of a competition. Some outdoor ranges have fully automatic rifles, which are a blast to shoot.

            7. Rent an expensive sports car for a day

            Don’t be afraid to live large from time to time—even if you can’t afford the glamorous lifestyle of the stars, you can most definitely play pretend for a day. Put on some classy clothes and drive around town in a rented sports car. The quick acceleration and high speed are sure to provide an exhilarating experience.

            8. Go on a shopping spree together

            Very few things can elicit such a huge dopamine rush as a good old shopping spree. Get some new lingerie, pretty shoes, a nice shirt and tie, a couple of new video games or whatever else you need or want. This is a unique chance to bond, have fun and get some stuff that you’ve been waiting to buy for a while now.

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            9. Hit the clubs

            For all the party animals out there, one of the best date ideas is to go out drinking, dancing, and just generally enjoying the night life. Visit a few good clubs, then go to an after-party and keep that party spirit going for as long as you can.

            10. Spend the day driving around the city and visiting new places

            This one is geared towards couples who have been together for a year or two and want to experience a few new things together. Visit a few cool coffee places on the other side of town, check out interesting restaurants you’ve never been to, and consider going to see a play or having fun at a comedy club on open mic night.

            11. Wine and chocolates at sunset

            Pick out a romantic location, such as a camping spot on a hill overlooking the city or a balcony in a restaurant with a nice view, open a bottle of wine and a box of chocolates and wait for that perfect moment when the sky turns fiery red to embrace and share a passionate kiss.

            12. Ice skating

            There is something incredibly fun about ice skating that brings people closer together and just keeps you laughing (maybe it’s all the falling and clinging to the other person for dear life). You can have some great fun and then move on to a more private location for some alone time.

            13. Body painting

            Speaking of private locations and intimate moments, body painting allows you to spice things up back at your place and add a new element of fun to foreplay. You’ll need adequate body paints and some brushes and the rest is up to you. You can do tiger stripes, paint a t-shirt on your partner, or go for something more abstract—the choice is yours.

            14. Model clothes for each other

            This one goes well when combined with a shopping spree, but you can just get a bunch of your clothes—old and new—from the closet, set up a catwalk area and then try on different combinations. You can be stylish, funny or beautiful. It’s a great after-dinner show and a good way to transition into a more intimate atmosphere.

            15. Dance the night away

            If you and your significant other are relatively good dancers, or if you simply enjoy moving your body to the rhythm of the music, then a night at salsa club or similar venue is the perfect thing for you. Alternatively, you can set up dance floor at home, play your favorite music, have a few drinks and dance like there is no tomorrow.

            16. Lock the doors, turn off the phones and have the whole house to yourselves

            This one might seem a bit obvious and kind of redundant seeing as how I’ve already mentioned a bunch of stay-at-home date ideas that require this step as a prerequisite, but when I say, “Have the whole house to yourselves,” I literally mean turning the whole house into romantic stage where you can explore your fantasies. Decorate each room a bit differently, have a lot of snacks and drinks lying around, put a bunch of blankets and pillows on the floor and go from room to room throughout the day. You can start off with a steaming shower, have a romantic meal, then watch a movie cuddled up on the couch and eventually make your way to the bedroom.

            17. Organize a nature walk

            Being outside has many health benefits, but what you are going for is the beautiful view, seclusion, and the thrill of engaging in some erotic behavior out in the open. You can rent a cottage far from the city, bring some food and drinks, and explore the wilderness. This is nice way to spice things up a bit and get away from the loud and busy city life.

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            18. Act out a fun scenario wearing costumes

            Some role-playing may be just the thing you need to spice up your love life after a few years of being together, but it can be a very fun experience for new couples as well. Work on the scenario together (wounded soldier and nurse, a female cop arresting a robber, etc.), buy the right costumes and accessories beforehand and find a good setting. You could also rent a hotel room to add to the forbidden-fruit vibe.

            19. Travel abroad

            This takes a bit of planning in advance and may be a bit costly, but if you can afford it, there are very few things that can match a trip to France, Italy, Egypt, Turkey, Greece, or a number of other excellent locations.

            20. Go on a hot-air balloon ride

            These are very fun and romantic—you get an incredible view, get to experience the thrill of flying, and you’ve got enough room for a romantic dinner and some champagne. Just be sure to wear warm clothes, it can get pretty cold high up in the air.

            21. A relaxing day at the spa

            Treat your body, mind and senses to a relaxing day at the spa. You and your partner will feel fresh, comfortable and relaxed—a perfect date for the more serious couples who don’t get to spend as much time with each other as they’d like.

            22. A trip down memory lane

            This one is great for long-term couples who will benefit from reminiscing about all of their fondest memories together from the start of the relationship through to the present, reliving some of the most significant moments they shared.

            23. Fun times at a karaoke bar

            A great choice for couples celebrating their first Valentine’s Day together—it’s fairly informal and inexpensive, yet incredibly fun and allows for deeper bonding. Once you have a few drinks in your system and come to terms with the fact that you are making a complete fool of yourself, you’ll have the time of your life!

            24. Helicopter tour of the city followed by dinner

            A modern equivalent to the hot-air balloon ride, the helicopter tour is among the more reasonably priced date ideas and is incredibly romantic and exciting. After about half an hour or an hour of sightseeing you can finish off the upper-class experience by dining in a nice restaurant.

            25. Horseback riding

            Horseback riding is incredibly fun, especially if you’ve never done it before. And what girl doesn’t dream of a prince coming to take her on an adventure on his noble steed? It evokes a sense of nobility and is a very good bonding experience.

            26. Plan a fun date night with other couples

            Take a break and rent a cabin in the woods, go to a mountain resort, a couple’s retreat, or just organize a huge date night at someone’s place and hang out with other couples. This is a great option for couples who have spent at least one Valentine’s Day together and allows you to customize your experience to suit your needs. Also, you can always retire early and get some alone time with your partner if you so desire.

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            27. Cocktail night

            This can be done privately, or with other couples if you are organizing a group Valentine’s Day celebration at someone’s house. All you need is a bunch of different drinks, a few accessories like fruit and spices, and internet access to check out some cool recipes online. Try out all sorts of fun cocktails and mix some brand new ones on your own. Make it a fancy dress night for added fun.

            28. Make reservations at an exclusive restaurant

            A fairly old school move, except this time you can pick out a restaurant that serves a particular type of cuisine you’ve never tried before. Go for a place that has unusual menus and likes to make a show out of presenting the food, rather than just going for your regular “suits and monocles” type venue.

            29. Go to a concert

            There are a whole bunch of things happening around Valentine’s Day, so go online and check out what’s happening near you. You’ll surely be able to find tickets for a cool concert or some type of festival with live music.

            30. Fancy night on the town

            Buy some elegant new clothes, rent a limo for the night and go to a nice restaurant, followed by a jazz club or gallery exhibition. Walk tall, make a few sarcastic quips, and have a few laughs with your partner while letting your inner snob take charge for a few hours.

            31. Take a tour of the historical and cultural sites of your city

            For the cultured crowd and history buffs among us, a day spent learning about some of the local history and delving deeper into national culture is both incredibly fun and a great way to share a unique experience with a loved one. You’d be surprised to find just how much you don’t know about the place you live in.

            32. Live out a James Bond film at a casino

            A beautiful lady in a simple yet sensual, form-fitting, black dress, and a strong and handsome, if somewhat stern-looking man in a fine suit walk up to a roulette table with drinks in hand and place bets at random as they smile at each other seductively. This is a scenario most of us wish to play out, but rarely get a chance. It can be a bit costly, but this is one of the most incredibly adventurous and romantic date ideas.

            33. Go bungee jumping

            People in long-term relationships often talk about things like keeping a relationship fun and exciting, doing new things together, trusting each other and using aphrodisiacs. Well, bungee jumping is a fun, exhilarating activity you can both enjoy; it requires trust and the adrenaline rush you get from it is better than any aphrodisiac out there. Just saying, give it a shot and you won’t regret it.

            34. Take a tour of a winery or brewery

            Taking a tour like this can be a great opportunity to learn new things about wine or beer (or perhaps whiskey) and how it is made, while at the same time getting a chance to taste some excellent drinks and get a few bottles for later in the evening.

            35. Make a fun music video

            Meet up earlier in the day, take decent camera, and start shooting a music video. Rehearse the lyrics (you can even make up your own silly song), dress up, and start filming. You’ll have tons of fun doing it and you can edit the video later and have a cool memento.

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            36. Play some sports

            Some one-on-one basketball, a soccer match against another couple, a bit of tennis, or even something as simple as a table tennis tournament (make it fun by stripping off items of clothing when you lose a game). You can combine this with date idea #13 and paint team uniforms on each other and play in the nude.

            37. Visit a club with live music

            A great option for just about any couple—pick a club that has live performers (whether it’s jazz, rock or even a poetry reading) and dress up for the occasion. Be sure to make reservations in advance to avoid the Valentine’s Day rush, and focus on making your date feel comfortable.

            38. Take skydiving lessons

            Another adrenaline-filled date, skydiving is sure to get your heart racing like crazy and leave you with a goofy grin for the rest of the day. You can offset all the excitement by ending the day with a quiet dinner at home.

            39. Go for some paintball

            Playing war games is an excellent way to get your body moving, focus on some of that hand-eye-coordination, and engage your brain in coming up with tactical solutions in the heat of the moment. It is also a great bonding experience, adrenaline-fueled fun, and role-playing all wrapped into one. And when you get back home, you can always act out the wounded soldier scenario (see #18).

            40. Fill the whole day with random fun activities

            Just say no to plans, reservations and clichés—take your partner by the hand, have your credit card ready and just go out and have some fun. Bowling, followed by a drink at a coffee shop and then a romantic movie? Sure, why not? Going for lunch at a nice restaurant and then organizing a double-date game night? Go right ahead. Going for a long walk in the park, visiting a museum, followed by romantic meal at home and then going out to a club? Hey, who am I to say no? You can use some of the ideas from this article and mash them up together to create a fun-filled Valentine’s Day you’ll both remember.

            There you go, a whole bunch of useful date ideas for all you loving couples out there. You can pick out any one of these, make some adjustments or even combine different options to create the perfect Valentine’s Day date for your significant other. Plan ahead, have fun and celebrate your love proudly.

            Featured photo credit: Relevante design via unsplash.com

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