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What to Say to Parents of Very Sick and Terminally Ill Children

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It isn’t easy for me to say it; my hearts beats a little faster each and every time I’m asked. I take a second to think is there a better way to say it?


I take a deep breath. I see that you’re waiting for my answer. My palms begin to sweat. I really don’t know how to say it without stunning you; the person who has asked me about my other children.

And I know what it is like to hear something you’re not expecting.

I remember talking to a mother outside a children’s ward, we were having a nice chat about the weather, the inconvenience of parking in the hospital and then I asked; “how many children do you have at home?”

The mother’s voice wobbled as she told me she had three, two at home and one had passed away.

I was not expecting her to say that.

What could I have said? I knew I couldn’t make it any better. We all know the death of a child is a parent’s worst nightmare. I felt such deep empathy for her. I said the same thing 99% of the population would say; “I am so so sorry”.

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She nodded as silence fell heavy between us.

I stood watching porters, nurses and doctors rushing in and out of the ward. My mind was panicking, what do I say now? Have I upset her?

“I am sorry,” I repeated as our eyes locked again. “What is your child’s name?” I felt my head automatically tilt to one side.

We stood talking about her wonderful, funny bright daughter Sarah. She told me of Sarah’s sense of humour, her love of animals and how great she was with her younger siblings.

I smiled as this heartbroken mother became full of life talking about her Sarah.

I tried to hide my shock, sympathy and pity from her; I couldn’t understand how this mother was smiling and full of conversation about her daughter who had lost her life to cancer.

We spoke for about half an hour. She asked me about my children and back then, I was only at the hospital because my eldest son needed grommets. I felt bad, guilty even… telling her my two boys were otherwise healthy. She smiled and told me her youngest was in getting his appendix out.

“Thank you” she rubbed my arm as she got ready to go back into her son.

“Thank you for telling me all about your Sarah” I felt the lump in my throat but pushed it down.

“Thank you so much for asking about Sarah and not the cancer.”

“Thank you so much for asking about Sarah and not the cancer.” She walked back into the hospital and I never saw her again.

That day and that conversation has stayed with me for many years. The strength that mother had was incredible.

I didn’t know it then, but I would soon have to find her strength.

I didn’t know how that ‘head tilt’, that ‘pity’ and that ‘I’m sorry’ would be things many strangers would do in my presence.

Shortly after that hospital visit, my eldest son Ethan, was diagnosed with a terminal rare disease called Hunter Syndrome- a progressive syndrome which would in time, leave him unable to walk, talk , eat and communicate. If he saw adulthood, he would need the same level of care as a baby would.

How do I say all that when I am asked about my children?

Like every parent; I want to talk about my greatest joy – my boys. My three wonderful boys.

I don’t want to upset, educate and lecture other parents who have simply asked an everyday question.

I take my time when asked about my children. I still get a bit nervous; nervous that I am going to stun and shock.

I have three boys, Ethan who is almost 14, J who is 11 and a dictating toddler D, who is 2 and a half (that half is very important to him).

We laugh when I say that, then comes the usual and fair observation “Wow you’ve a houseful ; I bet the older two are a great help to you, especially the 14 year old, he must be a great sitter.”

Like all parents, I am not going to lie or mislead about my children but if this is said to me as a parent is leaving I normally just smile and nod, but if the parent is sitting beside me and watching both our toddler’s play/argue; I feel compelled to correct that assumption.

I take a deep breath and respond “Not so much, no. My almost 14 year old has disabilities and my 11 year old has ADHD, so no not babysitters at all.” I tend to make eye contact with the person asking me the question at this point; I don’t know what I am looking for in that moment- acceptance… understanding… an interest… questions…

“Oh right, what disability does your son have?”

“He has Hunter syndrome.” I know they will have never heard of it, I wait all the same for them to state that and ask, as I prepare myself for telling them what it is.

It isn’t easy for me to say it ; my hearts beats a little faster each and every time I’m asked. I take a second to think is there a better way to say it?

“Oh, can’t say I’ve heard of it. ADHD I’ve heard of. What’s Hunter syndrome is it like Down syndrome or something like it?”

And so I explain that it is a terminal condition which has currently no cure. I explain that I’ve to watch my son regress through his life rather than progress. I explain that Down syndrome and Hunter syndrome have one thing and only one thing in common: they are both syndromes, meaning you can see the syndrome in comparison to the likes of ADHD which you cannot see.

An awkward silence hangs in the air, one of which I’ve become accustomed to.

“Jesus, I am so so sorry.” I am not surprised by this response at all, it’s very common and very understandable.

Of course you’re sorry, you’re human, you’re thankful it isn’t your child, but you are genuinely sorry that it is another mother’s child. I am sure that, that sorry is a mixture of empathy and pity…

I don’t feel any anger for you saying that you are sorry.

I’m sorry, I’m sorry that my son is ill, I’m sorry that my son has to live with such a cruel syndrome and I’m sorry my little family will be broken beyond repair.

“Me too,” is how I respond.

Here’s the tip: you’re sorry. You’ve already told me that, and I’ve responded.

Ask me about my son.

Ask me his name.

Ask me what he enjoys.

Ask me what he is like.

Always, always put the person before the disability or illness.

Ask about Ethan first. The syndrome second, I know you’re curious about a syndrome you’ve never heard of, but always, always put the person before the disability or illness.

Always.

As for the ‘I’m sorry’ sentence; in my personal circumstances, it doesn’t bother me, simply because I am sorry too.

What does bother me is that head tilt; one I was so used to doing before Ethan diagnosis. It screams pity…I don’t want pity,  I don’t write about my life and Ethan’s life for pity.

The confusing thing is empathy can often look like pity and I am all too aware of that… when I get that head tilt along with the “I’m so sorry,” I often find myself remembering my encounter with that mother outside the children’s ward… my intentions were honest and full of empathy… I know what it is like to be the parent who wasn’t expecting such a devastating answer to a very average question.

I write to hopefully raise awareness of Hunter Syndrome and rare conditions, I write to record all the wonderful things Ethan has done, has taught us and is still doing.

Ethan is almost 14; he still laughs, walks for short distances, talks with some words, cuddles us, kisses us, understands basic language and he still eats …he still tells me “I lobe you” – in a world where no one is promised a tomorrow;, I think we are doing quite well.

Ethan is the happiest child you could meet.

So don’t feel too ‘sorry’ for us. We are very lucky to have a child like him and to be shown a secret world which has changed our perspectives on so many, many things…yes it is ‘sad’ but Ethan doesn’t need “sadness;” he needs love, laughter and to live his life to the best of his abilities.

Yes, I’d be lying if I said it’s an easy life, but I am trying my hardest to give Ethan and his brothers happy memories. I cry… I scream… I am heartbroken; I didn’t know such heartbreak existed… but my boys don’t need to witness that, so I lock that away and talk about it to those who I know will understand.

Don’t most parents do the same thing with their worries? I am just like you, but different.

I want Ethan’s life on record because he is a gem and who better to record it than me, his mammy?

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Did you hear that? That was the sound of Nordstrom and Maisonette making all your kid's summer wardrobe dreams come true.

Nordstrom partnered with Maisonette to create the perfect in-store pop-up shop from May 24th-June 23rd, featuring some of our favorite baby and kids brands, like Pehr, Zestt Organics, Lali and more. (Trust us, these items are going to take your Instagram feed to the next level of cuteness. 😍) Items range from $15 to $200, so there's something for every budget.

Pop-In@Nordstrom x Maisonette

Maisonette has long been a go-to for some of the best children's products from around the world, whether it's tastefully designed outfits, adorable accessories, or handmade toys we actually don't mind seeing sprawled across the living room rug. Now their whimsical, colorful aesthetic will be available at Nordstrom.

The pop-in shops will be featured in nine Nordstrom locations: Costa Mesa, CA; Los Angeles, CA; Chicago, IL; Austin, TX; Dallas, TX; Bellevue, WA; Seattle, WA; Toronto, ON; and Vancouver, BC.

Don't live nearby? Don't stress! Mamas all across the U.S. and Canada will be able to access the pop-in merchandise online at nordstrom.com/pop

But don't delay―these heirloom-quality pieces will only be available at Nordstrom during the pop-in's run, and then they'll be over faster than your spring break vacation. Happy shopping! 🛍

This article is sponsored by Nordstrom. Thank you for supporting the brands that support Motherly and mamas.

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For decades, doctors have prescribed progesterone, one of the key hormones your body needs during pregnancy, to prevent a miscarriage. The hormone, produced by the ovaries, is necessary to prepare the body for implantation. As the pregnancy progresses, the placenta produces progesterone, which suppresses uterine contractions and early labor.

But a new study out of the UK finds that administering progesterone to women experiencing bleeding in their first trimester does not result in dramatically more successful births than a placebo. Yet, for a small group of mothers-to-be who had experienced "previous recurrent miscarriages," the numbers showed promise.

The study, conducted at Tommy's National Centre for Miscarriage Research at the University of Birmingham in the UK, is the largest of its kind, involving 4,153 pregnant women who were experiencing bleeding in those risky (and nerve-wracking) early weeks. The women were randomly split into two groups, with one group receiving 400 milligrams of progesterone via a vaginal suppository, and the other receiving a placebo of the same amount. Both groups were given the suppositories through their 16th week of pregnancy.

Of the group given progesterone, 75% went on to have a successful, full-term birth, compared to 72% for the placebo.

As the study notes, for most women, the administration of progesterone "did not result in a significantly higher incidence of live births than placebo." But for women who had experienced one or two previous miscarriages, the result was a 4% increase in the number of successful births. And for women who had experienced three or more recurrent miscarriages, the number jumped to a 15% increase.

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Dr. Arri Coomarasamy, Professor of Gynecology at the University of Birmingham and Director of Tommy's National Centre for Miscarriage Research, said the implications for that group are "huge." "Our finding that women who are at risk of a miscarriage because of current pregnancy bleeding and a history of a previous miscarriage could benefit from progesterone treatment has huge implications for practice," he said.

It's estimated that 1 in 5 pregnancies ends in miscarriage. And while even a spot of blood no doubt increases the fear in every expectant mother's mind, bleeding is actually a very common occurrence during pregnancy, Coomarasamy said. Still, first trimester bleeding is particularly risky, with a third of women who experience it going on to miscarry.

So for women who have been through it multiple times, Coomarasamy's findings are an important avenue to explore. "This treatment could save thousands of babies who may have otherwise been lost to a miscarriage," he added.

The study is among a number of recent groundbreaking discoveries made by doctors looking to further understand what causes miscarriages and what can be done to prevent them. While about 70% of miscarriages are attributed to chromosomal abnormalities, doctors recently learned that certain genetic abnormalities, which exist in a small group of parents-to-be, could be discovered by testing the mother and father, as well as the embryo.

Doctors have also discovered that even knowing the sex of your baby could predict the complications a mother may face, thus helping medical professionals to assist in keeping the pregnancy viable.

But while there is no sweeping solution to stop miscarriages, for some couples, the use of progesterone does offer a glimmer of hope. "The results from this study are important for parents who have experienced miscarriage," Jane Brewin, chief executive of Tommy's said. "They now have a robust and effective treatment option which will save many lives and prevent much heartache."

Brewin added that studies like this one are imperative to our understanding of how the creation of life, which remains both a miracle and a mystery, truly works. "It gives us confidence to believe that further research will yield more treatments and ultimately make many more miscarriages preventable," she said.

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It's never easy to give up a career and launch a whole new one, but when I decided to end my time as an opera singer and move into the field of sales, I knew I could do it. After all, I had the perfect role model: my mom.

When I was growing up, she worked as a dental hygienist, but when I started college, she took some courses in sales. She was single with two kids in college, which was a driving force to make more money. But above that, she truly had a passion for sales. In no time, she got jobs and excelled at them, ultimately earning her the title of Vendor Representative of the Year at her electronics company.

When I entered the field of sales, an unusual and unexpected twist followed. Several years into my career, I was hired by a different electronics company. My mom and I ended up selling similar products to some of the same businesses. (Neither of our companies realized this, and we have different last names.)

But rather than feeling uncomfortable, I saw this as a great opportunity. She and I were both committed to doing our best. More often than not, she beat me when we went after the same piece of business. But in the process, I learned so much from her. I was able to see how her work ethic, commitment and style drove her success. I had even more to emulate.

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Here are some of the biggest business lessons I learned from my working mom:

1. Use your existing skill set to differentiate yourself.

As a dental hygienist, my mom knew how to talk to people and make them feel comfortable. She had also served as a youth leader at three different churches where my dad preached. In each town, she found at-risk kids, brought them together and developed programs for them. She had learned how to help people improve themselves and make their lives better.

In sales, she did the same thing, focusing on how the products or services she was selling could genuinely make a difference in the lives of her customers. Those skills translated seamlessly into her new career.

2. Start strong from day one—don't wait for permission to launch your full potential.

From day one at a job, my mom showed up with energy and vigor to get going. She didn't take time to be tentative. Instead, she leaned into her tasks—the equivalent of blasting out of the gate in a race. Having seen how well this worked for her, I strive to do the same.

3. Have empathy, it's essential.

Many women have been falsely accused of being "too emotional" in business. However, empathy is a necessity and drives better results. As a businesswoman, my mom set herself apart by demonstrating genuine empathy for her clients and her colleagues. She loves getting to know people's stories. That understanding is a key component in her finalizing deals and helping her company reach higher levels of success.

4. Learn often—you're never done building your skill set.

My mom is the reason I spend at least three months out of each year getting a new certification or learning a new skill. She's always working to improve, harness new technologies or develop new competencies—and she's passed on that eagerness to learn to me. She knows that to stay on top, you have to keep learning.

5. Bring on the charm.

By nature, I'm analytical. I like to present the numbers to clients, showing the data to help sway their decisions. And that has its place, but charm is universal. Being someone people want to do business with makes a huge difference. If I had a nickel for every time a prospect told me, "I love your mother," I could retire now! Business, especially sales, is about the connections you make as much as the value you bring.

Our paths have taken our careers in different directions, but along the way, I've done my best to incorporate all these skills. Thank you, mom, for teaching me all this, and much more.

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Every mom has her own list of character traits each of she hopes to instill in her children, but there is one that stands out as a big priority for the majority of millennial mothers.

Motherly's 2019 State of Motherhood survey revealed that kindness is incredibly important to today's moms. It is the number one trait we want to cultivate in our children, and according to stats from the Harvard Graduate School of Education, this emphasis on kindness couldn't come at a better time.

In recent years kids and parents have been straying from kindness, but these Ivy League experts have some great ideas about how today's moms can get the next generation back on track so they can become the caring adults of tomorrow.

Between 2013 and 2014, as part of Harvard's Making Caring Common project, researchers surveyed 10,000 middle and high school students across the nation. They found that no matter what race, class or culture the kids identified with, the majority of the students surveyed valued their own personal success and happiness way more than that of others.

Why do kids value their own success so much more than things like caring and fairness? Well, apparently, mom and dad told them to.

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Eighty percent of the 10,000 students said their parents taught them that their own happiness and high achievement were more important than caring for others. (So much for sharing is caring.)

The folks at Harvard say that valuing your own ambition is obviously a good thing (in moderation) in today's competitive world, but prioritizing it so much more than ethical values like kindness, caring and fairness makes kids more likely to be cruel, disrespectful and dishonest.

So how do we fix this? Here's Harvard's four-step plan for raising kinder kids.

1. Help them practice being nice

Giving kids daily opportunities to practice caring and kind acts helps make ethical behavior second nature. They could help you with chores, help a friend with homework or work on a project to help homelessness.

All those tasks would help a child flex their empathy muscles. The key is to increase the challenges over time so your child can develop a stronger capacity for caregiving as they grow.

2. Help them see multiple perspectives

The researchers want kids to “zoom in" and listen closely to the people around them, but also see the bigger picture. “By zooming out and taking multiple perspectives, including the perspectives of those who are too often invisible (such as the new kid in class, someone who doesn't speak their language, or the school custodian), young people expand their circle of concern and become able to consider the justice of their communities and society," the study's authors' wrote.

3. Model kindness

Our kids are watching, so if we want them to be kinder, it's something we should try to cultivate in ourselves. The Harvard team suggests parents make an effort to widen our circles of concern and deepen our understanding of issues of fairness and justice.

4. Teach kids to cope with destructive feelings

According to the researchers, the ability to care about others can be overwhelmed by a kid's feelings of anger, shame, envy, or other negative feelings. They suggest we teach our kids teach that while all feelings are okay to feel, some ways of dealing with them are not helpful, or kind (for example, “Hitting your classmate might make you happy, but it won't make them happy and isn't very kind. Counting to 10 and talking about why you're mad is more productive than hitting.")

While the folks at Harvard are concerned that so many kids are being taught to value their own happiness above all, they were also encouraged by the students who do prioritize caring and kindness. One of the students surveyed wrote, “People should always put others before themselves and focus on contributing something to the world that will improve life for future generations."

If we follow the advice of Harvard researchers, the world will see more kids that think like that, and that's what future generations need.

[A version of this post was originally published November 8, 2017. It has been updated.]

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These days more women are having babies into their 40s, but the idea that women are facing down the biological clock is pretty pervasive—once you're over 35, you automatically receive that "advanced maternal age" classification, while your male partner's age may never even be mentioned. The pressure on older moms is unfair, because according to new research from Rutgers University, men may face age-related fertility decline too and America's dads are getting older.

It's a new idea, but this finding actually takes 40 years worth of research into account—which, coincidentally, is around the age male fertility may start to decline. According to Rutgers researchers, the medical community hasn't quite pinpointed the onset of advanced age, but it hovers somewhere between ages 35 and 45.

The study which appears in the journal Maturitas, finds that a father's age may not just affect his fertility, but also the health of his partner and offspring.

Based on previously conducted research, the team behind this study found evidence that men over 45 could put their partners at greater risk for pregnancy complications like gestational diabetes and preeclampsia. Babies born to older fathers also have an increased likelihood of premature birth, late stillbirth, low Apgar scores, low birthweight, newborn seizures and more. The risks appear to exist later in life, too: Research suggests children of older fathers have greater risk of childhood cancers, cognitive issues and autism.

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There's been plenty of studies surrounding advanced maternal age, but research on advanced paternal age is pretty slim—scientists don't quite understand how age correlates to these factors at this point. But researchers from Rutgers believe that age-related decline in testosterone and sperm quality degradation may be to blame. "Just as people lose muscle strength, flexibility and endurance with age, in men, sperm also tend to lose 'fitness' over the life cycle," Gloria Bachmann, director of the Women's Health Institute at Rutgers Robert Wood Johnson Medical School, explains in a release for this news.

As we've previously reported, more and more men are waiting until later in life to have children. According to a 2017 Stanford study, children born to fathers over 40 represent 9% of U.S. births, and the average age of first-time fathers has climbed by three-and-a-half years over the past four decades —so this research matters now more than ever, and it may represent the first step towards setting certain standards in place for men who choose to delay parenthood.

The biggest thing to come out of this research may be the need for more awareness surrounding advanced paternal age. This particular study's authors believe doctors should be starting to have conversations with their male patients, possibly even encouraging them to consider banking sperm if they're considering parenthood later in life.

Women certainly tend to be aware of the age-related risks to their fertility, and many regularly hear that they should freeze their eggs if they're not ready for motherhood. And while it's still too early to say whether we'll ever examine paternal age this closely, this research may set a whole new conversation in motion.

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