Life

What It Really Feels Like When Your Terminally Ill Child Dies

By Sheryl Steines

That Moment in Time – When it felt time to have my first child, I knew it, and approached it as inevitable.

But my next steps in life didn’t follow a straight path, it jerked sideways and turned out nothing like I imagined it would.

I define my life as the before and the after; before the birth of my twins and the single moment when I thought I had reached the end of a long struggle with infertility, hoping that the girls’ birth would minimize the sadness of the time it took to get pregnant with them.

That single moment when I realized it was far from over, and I felt myself being wrenched down an unfamiliar abyss.

While I was elated to give birth to a perfectly healthy little girl named Kayla, I also gave birth to her twin, a perfectly imperfect daughter named Stephanie, born with an undiagnosed neuromuscular disorder that in the end, would take her from us within the first year of her life.

What should have been the happiest of days could best be described as bittersweet.

For months, I was lost in that single moment, and how everything changed.

Living with a Terminally Ill Child – Emotions and senses are heightened when living with a terminally ill child.

Her muscles were weak, which affected her breathing, eating, digestion, and bowels.

She couldn’t sit or roll over.

She would never be able to eat, stand or sit without assistance.

Nothing in her life was normal, which meant that our lives became un-normal too.

Milestones, accomplishments, and even simple things like laughter were infrequent or just never happened.

Days and nights were consumed keeping Stephanie’s tiny, broken body stable and at peace.

For eleven months we had been successful and looking back now, the days flash by me in a blur, and yet, I can still relive them as if they were yesterday.

My daughter’s care routine involved round-the-clock nurses, feeding tubes, oxygen tanks, and medical equipment that beeped.

It was difficult to obtain medicines; and oxygen tanks ran empty on weekends.

Unfortunately, many times we were forced to wait for care because services and goods were not available until after a holiday or weekend.

These stressors tied me to a single moment in time, it is like I went through the motions.

The world was moving, but I felt stuck.

Unable to let it go, I couldn’t help but wish things had been different, normal, familiar.

I was angry, I was hurt and I was jealous.

In fact, the angst, anger, and sadness was compounded as one child thrived normally and hit her milestones with ease.

It became so obvious that Stephanie lagged far behind.

She would never roll over, sit up, drink from a sippy cup, crawl or walk.

I was forced to come to very difficult terms and make some very hard decisions.

Joy in the Darkness – From the start, we knew there was no cure for Stephanie’s disease because there was no real diagnosis.

The only truth we understood–Stephanie would die.

So I worked hard to find joy in a hopeless situation.

There might not be joy in the traditional sense of caring for a terminal patient, but what you come to understand is that there are good, kind people who give you a glimmer of help and hope.

Volunteers filled my life for 11 months.

Whether they held my child in the ICU when I couldn’t be there to do it myself or came to my house to run errands so I could have just a few moments of down time.

There are no words for the care and comfort from strangers who ask for nothing in return.

Nurses taught me how to be a mommy to a terminally ill child, encouraging me to hold my child without fear.

They offered suggestions on how to bond, by taping myself reading a book and leaving the tape at the hospital so my child would know my voice.

Stephanie did know my voice and it made her happy when she heard it.

I will never forget a very grim and private conversation with the hospice nurse, who allowed me to speak freely, without shame as I dealt with the most difficult of situations.

At the worst of times, when I could no longer travel with Stephanie, because she outgrew the only car seat that could protect her in her condition, her pediatrician came to the house to examine her.

I liked him before he did this and I would forever appreciate his kindness, long after she died.

It all Stopped the Day She Died – Life moved slowly, sluggish and tight; what I imagine walking through quicksand would feel like.

That is until a new moment jerked me from what finally felt familiar, and a new moment chased me down.

I will never forget my new single moment when I watched my baby die.

The end of caring for a terminally ill child came to me in two stages.

The first was relief that I no longer had to live in the midst of the stress nor the need to care so intensely.

Though the relief was filled with great sadness, I had little time to dwell on it.

There was still so much we had to do for the funeral, and for my surviving twin who still needed care and love.

At least for the time being, I had no medicine, beeping equipment, nurses, or that stress that comes with survival.

The second stage was the overwhelming sense of loss that finally hit me.

All of the stress and the feelings that had been tightly kept inside, bubbled to the surface.

Four months after my daughter died, I came face to face with the raw grief.

I’m part of a club that I would prefer not to be a member of.

I don’t look for a greater meaning or purpose in my daughter’s disease and death.

I simply survived it and came through to the other side with a realization that so many in this world have great struggles.

Sadness will never leave me and though I will always have a missing piece from my heart, I came out stronger, more compassionate and empathetic to others and the struggles they try to overcome.

Stephanie’s short life and eventual death inspires me to continue living, creating, growing and accomplishing; to leave behind a legacy.

I have a strong desire for my children to be proud of me, and for me, proud of myself.

I live, not because my daughter died, but because I am here.

Learn more about Sheryl Steines at www.sherylsteines.com and connect with her on FacebookTwitterLinked In and Goodreads. Her new book, Black Market is available on Amazon.

RISE NEWS is a grassroots journalism news organization that is working to change the way young people become informed and engaged in the world. You can write for us.

Cover Photo Credit: Paulius Malinovskis/ Flickr (CC By 2.0)

Ladies, This D Ain’t Free

The world is filled with hypocrites, racism, Donald Trump tweets, and double standards.

There are a bunch of double standards in different areas of life but, guess what I’ll be focusing on?

*Ding, Ding, Ding*

The dating world!

More specifically, the first date.

Yup, a perfect follow up to my Valentine’s Day special.

“Oh my god, how can he talk about double standards in the dating world if he isn’t in a relationship? Oh no. He’s generalizing.”

First of all, hush.

Not the case, whatsoever.

I decided that I would interview a few people and see where they stand on the topic.

I made a conscious effort to search for and include singles, couples, gay, straight, brown, white, purple, Donald Trump supporters.

I think I’m going to stop dropping his name now, every time I type it I hear “Dun, Dun, DUN”.

It’s weird.

So, after the Valentine’s Day article was published, my good friend Lamar a.k.a. Big Money Mar planted the seed in my head to write an article addressing the “Double Standard”.

I ran with it.

Actually, it gives me a great excuse to talk to all the pretty girls around campus and other universities in the area.

So, why not?

The question was “In regards to the first date, should men be expected to pick up the bill?”

Society, custom, tradition, status quo, what ever you wish to call it has deemed it a requirement for the man to pay for the first date.

It is what it is.

No way to get around it.

The man has always been expected to be chivalrous due to some old fashioned courting technique established when Shakespeare was shaking it for a shilling.

When I asked Habon, a senior at the University of Baltimore, if the man should pay for the first date?

She succinctly replied, “The man should always pay.”

What ever the first date looks like to you, the man must pay according to the rules of society unless it is communicated otherwise; which a few young ladies agreed with.

You know he just paid for dinner, right? Photo Credit: Iselin/ Flickr (CC By 2.0)

Sydney, a Towson University sophomore agreed.

“Yes, I believe that clear and understanding conversations can eliminate the double standard. I don’t think there’s a big problem with going half on the first date.”

“All depends on who asked who out” says Siobhan, a graduate student at The University of Baltimore. “I personally would pay for the first date if I asked the man out. If he asked me out, then I would expect him to pay.”

While Taylor, a senior at The University of Baltimore, strongly believes the man has to pay to have her heart. “If the man is truly interested in pursuing, he should pay on the first date. If not, I categorize him as a friend. Paying for the first meal is an act of providing for a potential lover. If he doesn’t pay, that’s not a good sign in my opinion.”

If some women believe that paying for the first date equates to showing interest, how do men discern whether a woman is interested in a relationship or interested in getting a free meal?

Think about that one.

In a society where women compete with men in all aspects of life whether it be the workplace, weight room, court room, and even the battlefield it seems hypocritical for a woman to bow out when the bill hits the table, don’t you think?

Some will avoid the conversation and brush it off with the usual rebuttal “It’s just how it is.”

But, if I’m not mistaken, not too long ago women weren’t allowed to hold the same position as a man in society and that was brushed off with “It’s just how it is.”

So how is it O.K. to want to break down walls but be selective of which bricks remain?

If you’re reading this and think to yourself “He’s making this a big issue because he’s broke”, that’s definitely not the case either and congratulations, you played yourself.

Honestly, this is a conversation that needs to be had.

Some women are holding onto this outdated custom which essentially places them in an inferior position but are steady marching around the world hoisting “Respect my Existence or Expect my Resistance” signs above their head.

I say inferior position very loosely because I am not implying that women can’t pay for the bill but, in my eyes women are surrendering their power just for an expected meal.

It’s mind-boggling to me.

I asked Jennifer R. for her position on the matter, a woman with more experience than the college girls I had interviewed.

She said: “Our society has always put pressure on a man to pay, especially with the first date. It’s expected. When I go on dates I always make sure I have money to cover the bill. I have paid for dates in the past, I want to pay for dates but the first one is the ice breaker. Let a man be a man from time to time but also give him the respect he deserves and pay.”

“It isn’t necessarily the man’s fault for the existence of the double standard” said Lamar a.k.a. Big Money Mar.

Which is true.

It isn’t our fault (or at least the Millennials)!

So where do we go from here?

How do we progress as a society if women hold onto outdated customs?

Ladies, some of y’all earn more than the male counterpart but are still expecting dinner on the first date.

Don’t allow old traditions to erase the historical and monumental progress that has been made over the years.

It’s 2017!

Out with the old, in with the new.

Pick up the bill ladies, turn the tables, and keep making history.

And always remember that this D ain’t free.

RISE NEWS is a grassroots journalism news organization that is working to change the way young people become informed and engaged in the world. You can write for us.

Cover Photo Credit: Eve Ma/ Flickr (CC By 2.0)

The Cruel Reality Of Finding Love While Studying Abroad

By Caitlin Roberts

Our love was easy.

Our love was what both of us had always been searching for, and when I left him in the Paris Metro station that day, I really believed that the two of us would survive a year apart, but it was not that cut and dry.

It soon became this messy cluster of depression, missed phone calls, and living in this constant state of missing each other.

It destroyed us from the inside out and it led to him saying to me, “I think that we may have run our course.”

What I ultimately learned over this past year and some change, is that a long-distance relationship, with an ocean standing between the two of us, could be one of the worst decisions either of us have ever made, yet neither of us regret any of it.

Almost every girl dreams about going abroad and having the cliché, tall, dark and handsome man sweep them off their feet, but I never thought it would actually happen to me.

Something like that only happens in dreams, right?

So, when I arrived in London to spend a semester abroad, the last thing I thought would happen was to meet the love of my life.

When I met him, I had only been in the city for six days.

Hell, I had only gone to one class.

I just kept asking myself, “How is this happening to me?”

Our first conversation was about drinking tea and discussing history like we were invited by Catherine the Great of Russia to one of her salons in the 1700s.

That just completely knocked the wind out of me.

Not only did I meet a handsome English boy six days into my trip, I met one that loved history as much as I did and wanted to discuss it with me over tea.

I thought I had died and gone to heaven and that was only the beginning of the best, and simultaneously the worst, thing that has ever occurred in my life.
Just when I thought things could not get any better, January 24, 2015 happened.

We spent the whole day shopping, eating lunch, flirting and just enjoying each other’s company.

It was that day when I realized that I was in love with him.

I was head over heels, for lack of a better term, in love with him.

Only two weeks had gone by and we were almost inseparable and I honestly thought I was crazy for feeling this way.

How could I know for sure after only two weeks?

Later that night, after we had way too much to drink with his friends and I was successful in having them all yell “Roll Tide” when we took tequila shots at a bar in Clapham, we were standing out in the cold air drunkenly goofing off waiting for our Uber to arrive.

I had said something completely ridiculous and he responded with a jovial laugh and said, “This is why I love you,” and pulled me closer to him.

Without hesitation, I responded by laughing and saying, “I love you too.”

For the first week after that night, we were very noncommittal with “I love you,” because we were both wary about saying it too soon, but it felt right so finally we said it.

We both put it out there, even though we were not sure who actually said it first on the street a few nights before or whether that one counted.

We said it sober instead of just texting the uncertain “I <3 you” and decided to embark on the greatest and most fulfilling relationship either of us had ever had.

The next three months were filled with too much netflix, The Simpsons, debating over whether or not putting Nesquik in milk was considered a milkshake, and going on dates to places like the Churchill War Rooms.

I felt so alive.

A Creperie in London. Photo Credit: Davide D'Amico/ Flickr (CC by 2.0)

A Creperie in London. Photo Credit: Davide D’Amico/ Flickr (CC by 2.0)

I felt so safe and sure of myself.

Being with him gave me so much confidence to just be me and go after what I wanted.

He supported me and was genuinely interested in everything I had to say, even if I did talk about my love for Kate Middleton too much.

He loved me for me and wasn’t asking me to change a thing.

I didn’t feel like I needed to be someone I wasn’t, just to make him stick around.

My friends back home quickly noticed my change in demeanor.

I would light up whenever I would talk about him.

I was not trying to find faults that would allow me a way out, like I had done with every other guy I had ever been romantically involved with in the past.

This time was different and I really thought that this one was going to stick.

Fast forward to May of 2015, and my friends had arrived for our month long trip through Europe.

We checked off our eight days in London and the next stop was Paris.

He joined us for the last three of our five days and when I had to say goodbye to him on the afternoon of May 14, you could have thought that one of us was dying or that we were never going to see each other again.

The second thought could have honestly not been too far off.

We had only spent four months together, which has never seemed like a lot in retrospect, yet we both felt as if we were losing someone we had known for years.

We felt like we were losing a part of us and we didn’t know if we were ever going to get it back.

We stood there in the metro station, holding each other while constant waves of tears rolled down the shapes of our faces.

For me, no one else was there.

It was just the two of us, cherishing the last time we would physically feel our love for each other for half a year.

Then, it was over.

We both went our separate ways and embarked on the dreaded long-distance relationship that so many people avoid at all costs.
“I have searched so long for the perfect girl for me,” he said. “And now that I have found her, I’m never letting you go.”

The next six months were awful in the sense that I was alone most of the time even though I was surrounded by friends who were constantly trying to cheer me up.

None of it seemed to work.

My body was constantly bogged down with an overwhelming sadness and I sunk into a state of depression that I had seen in others, but never experienced myself.

Facetime sessions, phone calls, and texts that read “I miss you,” and “I love you,” were becoming too much.

I was not only sad, but I was angry.

I couldn’t understand how I could find someone that I thought was perfect for me and I wasn’t able to be with them.

I was becoming bitter and angry because I was just so sick and tired of missing him.

Things on his end, 4,300 miles away, were just about the same.

We wanted so badly to make this thing that both of us had searched for, for so long work, but it seemed like it was only getting harder everyday.

November 14 is when he left Alabama after coming to visit me for two weeks.

After that date, nothing seemed to be going right.

Sweet, loving conversations turned into screaming matches over things that did not matter and times when both of us would spend half of our day angry at one another because we were six hours apart in time.

We began to rip apart what was left of this, piece by piece like animals.

Then, my visit in March, marked the end.

Something had been off for a really long time and it had driven a wedge between us.

Our Titanic hit the iceberg and started going down fast, but unlike the original, there were only two casualties this time.

Now, I have to ask myself, “How will I manage to get over him?,” because I never imagined that this would be the outcome.

I imagined it lasting for much longer, and possibly forever, but now I am seeing that some things are not meant to last, no matter how much you want them to.

I still love him with every inch of me and I can’t say I regret us, because I would be lying.

Part of me hopes that when I move to London later this month, our timing will be right this time.

Maybe in this version of the Titanic, Jack and Rose survive the turmoil and overcome everything that is thrown at them, but I absolutely cannot throw my life away by putting all that I have onto a sinking ship.

RISE NEWS is a grassroots journalism news organization that is working to change the way young people become informed and engaged in the world. You can write for us.

Here Are 7 Tips Your Dog Is Trying To Teach You About Living Better

By Douglas Green

How would you like you like to spend 2016 as contented and centered as your dog?

As a psychotherapist, I spend a lot of time dealing with people and our big-brained problems. On most issues, like how to create a telephone that uses 3D touch to show birds catapulting into pigs, we are just brilliant. But we leave a lot to be desired in such areas as how to deal with each other, and how to live…those “human” quandaries!

So a few years back, I started watching my dog, Shirelle, to see how she avoids these problems. And I’ve tried to pass on what I’ve learned.

Now, many people have this idea, that you should only improve your lives once a year, when the calendar changes. A dog would say that’s crazy. If Shirelle found an imperfection in her squirrel-chasing technique in March, she wouldn’t wait ten months to adjust it – but oh well, that’s what makes us human.

Below, I’ve shared some key life lessons for us sapiens as we embark on 2016. Not to improve you so much, as to just make you happier – which, of course, is what dogs crave to their cores.

1. A few more times a day, forget that you have a past and a future.
Wise people will tell you to “live in the moment.” Pooches do that all the time; that’s why no dog ever needed a yoga class. But let’s face it – our jumbo-tron brains are too powerful not to constantly refocus on tomorrow, next summer, and yesterday.

However, we can pause that time-traveling, for moments. Try checking in right now. Treat this second as the only point that exists. What do you have, what do you need (right now, not for dinner or your retirement), what feels good, what hurts? And once you’re done, go back to your regular mind.

Try this a few times a day. If you already do it, add a few more and just see how it resets you.

2. Put yourself in someone else’s shoes, more.
Even the least selfish person often has trouble relating to others. How many of us sing about brotherhood, but the second we click onto our beloved social media, rant that anyone who disagrees with us about a tax rate is uglier than a naked mole rat?

When you’re positive someone else’s point of view is evil and insane, try to admit, instead, that we all have similar brains and figure out what led them there. Once you do, you can still disagree with them, but you’ll have lost the unhealthy prejudice.

After all, dogs mostly find us folks incomprehensible, but they still love us and try to follow our thinking.

After all, dogs mostly find us folks incomprehensible, but they still love us and try to follow our thinking. If you can do this same for others, your humility might make you as lovable as…okay, not quite as lovable as Marley, but closer than you are now.

3. Pollute and poison less.  
All animals pollute, but humans are the only ones brilliant enough to create materials that don’t serve the earth at all. When you throw a plastic bag out, or dump millions of gallons of toxins into an ocean, you can’t just kick some dirt over it and make your mess okay, the way mutts can.

A dog would suggest, and request, that you simply improve. If you’re a lazy slob, and you just start recycling your beer bottles, that will help things a bit. And if you already re-use paper, save your shower water, and drive an electric car charged by the sun, maybe you could also buy more locally-grown food? Every bit helps!

And just to clarify, animals don’t really notice which individual humans or corporations do the polluting. As far as they’re concerned, all us humans left that trash there, and all us humans haven’t cleaned it up.

So please, go a little out of your pathway and pick up that can, or try to help a river not turn to poison. It’ll make you feel good. And the stray pup out on the street would do it too if he could. Just for the feeling.

See this cool dog gets it. Photo Credit: Rich Robinson/ RISE NEWS

See, this cool dog gets it. Photo Credit: Rich Robinson/ RISE NEWS

4. Find more moments to enjoy and find more to enjoy about more moments.
When you open your front door in the morning, what’s going though your head? Lateness? Upcoming traffic? Some argument you had over breakfast?

You know what goes through a dog’s? The smells! The hit of fresh air with an unexpected temperature! Hundreds of sounds suddenly so clear! And even though her eyes are nowhere near as powerful as yours, millions of things to see!

Do you take in the sky? Do you count the stalks of grass? Do you check to see if there are any squirrels or ants or bees or lizards or even cats in sight?

And that’s only one moment. Each day has 86,400 seconds in it. Do you spend even one just rolling in what is? Or do you rush to media, to hear some pundit tell you whether the day was worth living or not?

Right now, pick a leaf off an interesting tree, look it over carefully, sniff it, run your fingers over it with your eyes closed, and chew it. Feels like being a kid, doesn’t it? Back when you did such things by instinct – the way a pup does all the time.

5. Give yourself just a bit more sleep.
Scientists estimate that dogs sleep twelve to fourteen hours a day on average, which means some snooze a lot more.

I’m not suggesting you go to that extreme, but one reason dogs tend to be so healthy and active is that they grab z’s whenever they can. What if you found a way to go to bed just a half hour earlier tonight? Or to take a nap this afternoon?

Maybe record that TV show, curl up, count sheep, and see what happens to your mood, your skin, your work skills, and even how others treat you.

6. Be silly more – silly for you.
People say dogs are clowns, for the way they act when they see a leash, or the signs of oncoming dinner. But what’s wrong with that?

Silliness isn’t just a part of life; it’s a core of it, a celebration of it. Now, if you’re great at telling naughty jokes at dinner parties, that’s fine. But when’s the last time you ran around in a sprinkler on a hot day? Sang so loud you hurt your vocal cords? Or barked in conversation with a dog?

Here’s my definition of silliness: Any action, the doing of which would normally make you blush in embarrassment. Every silly act actually helps you overcome your fear and shame. Every dog lives it, and any good doctor would prescribe it often.

7. Tell and show those you love that you’re crazy about them more.
Here’s where canines most excel. When you come home at the end of a long day, do you tell your family how happy you are to see them, and that they even exist? What about at your job – do you find ways to express your feelings about your coworkers?

The most common deathbed regrets humans report are not having spent more time with those they love, and not having let them know it. And that’s dumb, because nothing is easier! Just let it out!

Jump on a friend and kiss the top of their head. Yell across a business networking confab, “I have the best assistant in the world!” And call your mother and tell her you’re grateful.

No one can control what the world does to them, but these tools all help making living whatever hand you’re dealt more enjoyable. And, in all my years of watching dogs, if there’s a way to do too much of any of these, I haven’t seen it.

So try them, and good luck. May this be the year your tail learns how to wag!

Douglas Green is a psychotherapist, specializing in helping kids and teens build lives they can be proud of. He is also the creator and writer for AskShirelle.com, which helps kids, teens, parents, and others around the world with advice from the point of view of a friendly dog, and is the author of The Teachings of Shirelle – Life Lessons from a Divine Knucklehead. You can learn more about Green at www.CavalleriaPress.com, and connect with him on Facebook and Twitter.
 

Cover Photo Credit: Sandra Druschke/ Flickr (CC By 2.0)

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