A modern lifestyle brand redefining motherhood

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

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”.

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?

Who said motherhood doesn't come with a manual?

Subscribe to get inspiration and super helpful ideas to rock your #momlife. Motherhood looks amazing on you.

Already a subscriber? Log in here.

Going back to work after having a baby is hard. Regaining your footing in a world where working mothers are so often penalized is tough, and (just like most things during the postpartum period) it takes time.

The challenges we face as working women returning from a maternity leave can be so different from those we faced before, it can feel like we're starting over from scratch. But mothers will not be deterred, even if our return to the working world doesn't go exactly as planned.

We are resilient, as Serena Williams proved at Wimbledon this weekend.

She lost to Angelique Kerber in the final, just 10 months after welcoming daughter Alexis Olympia and recovering from a physically and emotionally traumatic birth experience.

Williams didn't get her eighth Wimbledon title this weekend, but when we consider all the challenges she (and all new moms) faced in resuming her career, her presence was still a huge achievement.

"It was such an amazing tournament for me, I was really happy to get this far!" Williams explained in an emotional post-match interview.

"For all the moms out there, I was playing for you today. And I tried. I look forward to continuing to be back out here and doing what I do best."

The loss at Wimbledon isn't what she wanted, of course, but Williams says it does not mean there won't be wins in her near future.

"These two weeks have showed me I can really compete and be a contender to win grand slams. This is literally just the beginning. I took a giant step at Wimbledon but my journey has just began."

When asked what she hopes other new moms take away from her journey, Williams noted her postpartum recovery was really difficult, and hopes that other moms who face challenges early in motherhood know that they don't have to give up on whatever dreams they have for themselves, whether it involves working or not.

"Honestly, I feel like if I can do it, they can do it. I'm just that person, that vessel that's saying, 'You can be whatever you want to be.' If you want to go back to workand to me, after becoming a mom, I feel like there's no pressure to do that because having a child is a completely full-time job," she said.

"But to those that do want to go back, you can do it, you can really do it."

Thank you, Serena. You may not have won, but this was still a victory.

You might also like:

Since baby Crew became the newest member of Chip and Joanna Gaines' family three weeks ago, his proud parents have been keeping the world updated, sharing sweet snaps of their youngest and even giving us a glimpse into his nursery.

Now, Chip Gaines is showing off a pic that proves there is nothing cuter than a floppy, sleepy baby.

"My heart is full..." the proud father of five captioned the photo he posted on his Instagram and Twitter accounts.

Earlier this week Crew's mama shared how she gets him so sleepy in the first place, posting an Instagram Story showing how she walks around the family's gardens on their Waco, Texas farm to lull her newborn boy to sleep.



The couple are clearly enjoying every single moment of Crew's babyhood. As recently as 7 days ago Chip was still sporting his hospital bracelet. Joanna says with each child he's worn his maternity ward ID until it finally wears off. We can't blame Chip for wanting to make the newborn phase last as long as possible.

You might also like:

It was a changing table must-have a generation ago, but these days, many parents are forgoing baby powder, and now, the leading manufacturer of the sweet smelling powder was dealt a big financial blow.

Johnson & Johnson was just ordered to pay almost $4.7 billion to 22 women who sued, alleging baby powder caused their ovarian cancer.

A St. Louis jury says the women are right, but what does The American Academy of Pediatrics say about baby powder?

It was classified "a hazard" before many of today's parents were even born

The organization has actually been recommending against baby powder for years, but not due to cancer risks, but inhalation risks.

Way back in 1981 the AAP declared baby powder "a hazard," issuing a report pointing out the frequency of babies aspirating the powder, which can be dangerous and even fatal in the most severe cases.

That warning didn't stop all parents from using the powder though, as its continued presence on store shelves to this day indicates.

In 1998 Dr. Hugh MacDonald, then the director of neonatology at Santa Monica Hospital and a member of the American Academy of Pediatrics Committee on Fetus and Newborn, told the Los Angeles Times "Most pediatricians recommend that it not be used," adding that the consensus at the time was that "anybody using talcum powder be aware that it could cause inhalation of the talc, resulting in a pneumonic reaction."

Recent updates

A 2015 update to the AAP's Healthy Children website suggests the organization was even very recently still more concerned about the risk of aspiration than cancer risks like those alleged in the lawsuit. It suggests that parents who choose to use baby powder "pour it out carefully and keep the powder away from baby's face [as] published reports indicate that talc or cornstarch in baby powder can injure a baby's lungs."

In a 2017 interview with USA Today, Dr. David Soma, a pediatrician with the Mayo Clinic Children's Hospital, explained that baby powder use had decreased a lot over the previous five to eight years, but he didn't believe it was going to disappear from baby shower gift baskets any time soon.

"There are a lot of things that are used out of a matter of tradition, or the fact it seems to work for specific children," he said. "I'm not sure if it will get phased out or not, until we know more about the details of other powders and creams and what works best for skin conditions—I think it will stick around for a while."

Talc-based baby powder is the kind alleged to have caused ovarian cancer in the lawsuit (which Johnson & Johnson plans to appeal), but corn starch varieties of baby powder are also available and not linked to increased cancer risks as alleged in the case.


Bottom line: If you are going to use baby powder on your baby's bottom, make sure they're not getting a cloud of baby powder in their face, and if you're concerned, talk to your health care provider about alternative methods and products to use on your baby's delicate skin.

You might also like:

In the days since a The New York Times report revealed a resolution meant to encourage breastfeeding was blocked by U.S. delegates at the World Health Assembly, breastfeeding advocates, political pundits, parents, doctors—and just about everyone else—have been talking about breastfeeding, and whether or not America and other countries are doing enough to support it.

The presidents of the American Academy of Pediatrics and the American College of Obstetricians say the controversy at the World Health Assembly reveals that mothers need more support when it comes to breastfeeding, while others, including The Council on Foreign Relations, suggest the national conversation needs more nuance, and less focus on the "breast is best" rhetoric.

The one thing everyone agrees on is that parents need more support when it comes to infant feeding, and in that respect, the controversy over the World Health Assembly resolution may be a good thing.

In their joint letter to the editor published in the New York Times this week, the presidents of the American Academy of Pediatrics and the American College of Obstetricians, Dr. Colleen Kraft and Dr. Lisa Hollier urge "the United States and every country to protect, promote and support breast-feeding for the health of all women, children and families."

The doctors go on to describe how breastfeeding "provides protection against newborn, infant and child infections, allergies, asthma, inflammatory bowel disease and sudden infant death syndrome," and note the health benefits to mothers, including reduced risks for "breast cancer, ovarian cancer, diabetes, hypertension and heart disease.

"Helping mothers to breastfeed takes a multifaceted approach, including advancing public policies like paid family leave, access to quality child care, break time and a location other than a bathroom for expressing milk," say Kraft and Hollier.

Certainly such policies would support breastfeeding mothers (and all mothers) in America, but some critics say framing the discussion around domestic policy is a mistake, because the World Health Assembly resolution is a global matter and women and babies in other parts of the world face very different feeding challenges than we do here at home.

In an op-ed published by CNN, Gayle Tzemach Lemmon, an adjunct senior fellow at the Council on Foreign Relations suggests the laudable goal of breastfeeding promotion can backfire when mothers in conflict-riddled areas can't access formula due to well-meaning policy. Lemmon points to a 2017 statement by Doctors Without Borders calling for fewer barriers to formula distribution in war-torn areas.

"International organizations like UNICEF and the World Health Organization (WHO) promote breastfeeding ... and provide infant formula, but only by prescription. We believe that distributing infant formula in a conflict situation like Iraq is the only way to avoid children having to be hospitalized for malnutrition," Manuel Lannaud, the head of Doctors Without Borders Iraq mission wrote.

The various viewpoints presented this week prove that infant feeding is not a black and white issue, and policy debates should not be framed as formula versus breast milk—there is more nuance than that.

A recent study in the Journal of Pediatrics found opting to supplement with formula after first breastfeeding improves outcomes for infants and results in higher rates of breastfeeding afterward, and while the benefits of breastfeeding are numerous, they are sometimes overstated. Another recent study published in the journal PLOS Medicine found breastfeeding has no impact on a child's overall neurocognitive function by the time they are 16. Basically, parents should not be shamed for supplementing or choosing to use formula.

This, according to Department of Health and Human Services says national spokesperson Caitlin Oakley is why the HHS opposed the original draft of the breastfeeding resolution at the World Health Assembly (although critics and the initial NYT report suggest the United States delegation were acting in the interests of infant formula manufacturers).

"Many women are not able to breastfeed for a variety of reasons, these women should not be stigmatized; they should be equally supported with information and access to alternatives for the health of themselves and their babies," Oakley said in a statement.

That's true, but so is everything the presidents of the American Academy of Pediatrics and the American College of Obstetricians presented in their op-ed, and that's why the U.S. should support breastfeeding policy.

Here's another truth: This is an issue with many perspectives and many voices. And we need to hear them all, because all parents need support in feeding their babies, whether it's with a breast, a bottle or both—and we're not getting it yet.

You might also like:

Motherly provides information of a general nature and is designed for educational purposes only. This site does not provide medical advice, diagnosis or treatment.Your use of the site indicates your agreement to be bound by our  Terms of Use and Privacy Policy. Information on our advertising guidelines can be found here.