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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?

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2018 will go down in history as the year that gave us a royal wedding, a second Chrissy Teiegn cookbook and saw Serena Williams prove that new mamas can do anything. It's also the year that a bunch of adorable celebrity babies came into the world.

Here's to all the celebrity babies born this year!

Elizabeth Smart and Matthew Gilmour welcomed baby Olivia

Back in June author and activist Elizabeth Smart announced she and husband Matthew Gilmour were expecting their third child, and in November baby Olivia arrived.

She was born in hospital and Smart shared a sweet post-birth selfie with her Instagram followers.

"So happy to welcome Olivia to our family!" she wrote.

We are so happy for her.

Jessica Chastain and Gian Luca Passi de Preposulo welcomed a baby girl

After actress Jessica Chastain was spotted out in October carrying a baby in a car seat, media outlets began to speculate about whether she and husband Gian Luca Passi de Preposulo had become parents, and it turns out the rumors are true. On November 19, E! News reported Chastain's daughter was born in the spring, via surrogate.

Chastain has not spoken publicly about her daughter or posted any baby photos on her Instagram, which is absolutely her choice. If she ever does decide to talk about the early days of her daughter's life, we will be all ears!

Until then, congratulations to Jessica and Gian!

Kate Upton and Justin Verlander welcomed daughter Genevieve

What a sweet little face! On November 10 Kate Upton and Justin Verlander introduced the world to their daughter, Genevieve Upton Verlander who was born on November 7.

On his Instagram account proud dad Verlander added notes "You stole my ❤️ the first second I met you!!!"

Looks like Genevieve's parents are very much in love with their baby girl.

Gabrielle Union and Dwyane Wade welcomed (a surprising) baby girl 

Gabrielle Union and Dwayne Wade shocked the world in November by announcing the birth of the daughter fans didn't know they were expecting!

"We are sleepless and delirious but so excited to share that our miracle baby arrived last night via surrogate and 11/7 will forever be etched in our hearts as the most loveliest of all the lovely days. Welcome to the party sweet girl!" Union, who has previously written about her struggles with infertility, wrote on Instagram.

Diane Kruger and Norman Reedus welcomed their first baby together

Diana Kruger and her partner, Walking Dead star Norman Reedus, are the latest celebrity parents to welcome a new baby, but unlike a lot of celebrity couples they did not do an Instagram baby announcement.

The family is keeping things low key, but People reports it has confirmed the baby's arrival.

Whether or not a family chooses to publicize their child's image and name is totally up to the parents, whether they are famous or not. Kruger and Reedus may choose to keep their baby out of the spotlight and that's totally cool. Big announcements aren't for everyone.

 Hilary Duff and Matthew Koma welcomed daughter Banks Violet Bair

Hilary Duff shared some big news in October, dropping an adorable birth announcement on Instagram and letting the world know that she had a home birth for daughter Banks Violet Bair. What a unique name!

Pippa Middleton and James Matthews welcomed a baby boy 

Little Prince Louis now has a close cousin! The Duchess of Cambridge's sister, Pippa Middleton, and her husband James Matthews welcomed a baby boy on October 16, one day after her sister's sister-in-law, Meghan Markle, announced her pregnancy.

Kate Hudson and Danny Fujikawa welcomed baby Rani Rose 

Kate Hudson is now a #girlmom.

The actress (who is also mom to sons, 7-year-old son Bingham and 14-year-old son Ryder) and her partner Danny Fujikawa announced the birth of their daughter one day after she was born on October 2. The birth announcement came via a series of Instagram slides, captioned with simply, "She's here".

"We have decided to name our daughter Rani (pronounced Ronnie) after her grandfather, Ron Fujikawa. Ron was the most special man who we all miss dearly. To name her after him is an honor," Hudson wrote.

"Everyone is doing well and happy as can be. Our family thanks you for all the love and blessings that have been sent our way and we send ours right back."

Jillian Harris and Justin Pasutto welcome baby Annie 

On October 1 Jillian Harris and Justin Pasutto announced they just welcomed their second child (and first girl), baby Annie. According to the Instagram post introducing Annie, Harris and Pasutto were enjoying a date night when Annie started making her entrance into the world, interrupting mom and dad's round of golf.

 Kim Kardashian +  Kanye West welcomed Chicago Noel West

Celebrity power couple Kim Kardashian and Kanye West welcomed their third child, baby Chicago via a gestational surrogate on January 15, 2018. Chicago came into the world weighing 7 pounds, 6 ounces and was instantly loved by the whole Kardashian family, including her siblings, North and Saint.

"We're so in love," Kardashian said in a statement released shortly after Chicago's birth.

"We are incredibly grateful to our surrogate who made our dreams come true with the greatest gift one could give," the proud mama explained.

[Updated: November 20, 2018.]

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I was at my midwife appointment two weeks before my due date. After hearing my daughter's heartbeat and answering some questions, the midwife asked if I was planning to breastfeed.

Mentally scanning my perfectly outlined first-time-mom birth plan—complete with bullet points and bolded phrases which I had carefully picked—I realized that I hadn't even considered this notion until half a second ago. I was so preoccupied with the details surrounding how I was going to get this baby out of me that I hadn't contemplated how I would actually keep her alive once she was disconnected from my placenta.

I shrugged and replied, "Sure, I guess I will if I can." So I added my breastfeeding bullet point to my birth plan.

I woke up to my buzzing phone on the morning of March 29th. "Due Date" popped up as a notification on my calendar, as if the birth of my child could be scheduled in the same way you would an oil change.

I had everything planned. I would first labor quietly, un-medicated, wearing makeup and using my hypnobirthing techniques I been studying. Then, when I was ready to push, my baby would be delivered in a very reasonable amount of time with minimal tearing.

She would be placed on my chest where together we would soak in the hormonal love cocktail that I had read so much about. Afterward, I would unpack my laptop to check work emails during the downtime that I had assured myself would be bountiful during our hospital stay.

Growing more impatient as the time lingered since my due date notification, the hours turned to days. My water finally broke three long days later. My actual labor started quickly after I began bragging to my visitors about how manageable the contractions were.

I sweated my makeup off soon after. The calm and meditative laboring state I had prepared myself for was more akin to the calmness one would have upon placing the palms of their hands onto the burners of a searing hot stove.

The intervals between my contractions vanished as I eventually ripped my clothes off, hoping I could somehow crawl out of my skin. I gasped for breath between sobs when my midwife assured me that I was two whole centimeters dilated.

As fate would have it, 48 hours later, I would deliver my bruised and exhausted baby laying on my back, crying and shaking on an ice cold operating table.

As it turns out, enjoying approximately 35 seconds of sleep in a span of days doesn't do much for one's patience levels. Sore and freshly bound around the abdomen, I couldn't possibly be expected to employ my motherly duties yet, could I?

Whoever was supposed to serve me the hormonal love cocktail I was promised, apparently skipped my hospital room. My emails went unanswered as I ineptly tended to my shrieking newborn.

"The Universe laughs when you have a plan," I once read. The Universe must have taken one look at me and rejoiced: Boy was I in for a lesson.

Once settled in at home, I realized that breastfeeding wasn't going to work for us after all. Then I experienced a heavy period of postpartum depression.

Just weeks prior, I had everything planned so precisely. Things that pertained not just to the infancy stage I was so freshly experiencing now, but things that I had no right to plan, as I wouldn't truly understand them for months and some even years.

I had sworn to myself that I would always treat my child with kindness and patience...and look good while doing so. I told myself that I would reserve time for me to enjoy my hobbies and never "lose sight of myself." But suddenly, intellectually stimulating toys, perfectly situated hair bows, and frankly, brushed teeth meant much less to me.

Through the birth of my second daughter, I learned that a healthy baby is enough, no matter how they get here. This time, using medication, I graciously welcomed her into the world. Promptly after enjoying the love cocktail I had waited so patiently for, I let the nurses whisk her off to care for her in the nursery as I took a well-deserved nap.

Life with two small children required adjustments and another shift in expectations, but this time around I laughed my way through it. (And I learned to appreciate the texture of my unwashed hair, too.)

It wasn't until I finally let go of who I thought I should be that I finally felt satisfied by who I am. I am often frazzled, over-stressed and disheveled. I don't always feel very interesting and I am no longer the perfectly curated woman I once was.

I'm chronically late and not unlike my oldest daughter, I often burst in exhausted, bruised and five days late. Deadlines and appointments sometimes slip by and surprisingly, my heart continues to beat.

But most importantly, I'm an extremely good mother. Pay no attention to the non-organic popsicle stains running down my children's mismatched clothing or the bird nests of hair sitting atop their heads: because we are happy. And that is what is important.

Despite my earlier expectations that I have fallen quite short of, my children are well. They are not perfect, nor am I. Neither were any of the women who have come before or will come after me. I only make plans now with the caveat that they must be subject to change. The Universe can now laugh with me, not at me.

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The American Academy of Pediatrics says that newborns, especially, do not need a bath every day. While parents should make sure the diaper region of a baby is clean, until a baby learns how to crawl around and truly get messy, a daily bath is unnecessary.

So, why do we feel like kids should bathe every day?

Bathing frequency

There is no scientific or biological answer to how often you should bathe your child. During pre-modern times, parents hardly ever bathed their children. The modern era made it a societal norm to bathe your child daily.

Many babies and toddlers, especially those who aren't walking yet, don't need to be washed with soap every day. If a child has dry, sensitive skin, parents should wash their child with a mild soap once a week.

On other nights, the child may simply soak or rinse off in a lukewarm, plain water bath if they are staying fairly clean. Additionally, parents can soak their children in a water bath without soap most nights or as needed as part of a routine.

Cause of skin sensitivity

Many problems with sensitive, irritated skin are made worse by bathing habits that unintentionally dry out the skin too much. Soaking in a hot bath for long periods of time and scrubbing will lead to dry skin. Additionally, many existing skin conditions will worsen if you over-scrub your child or use drying, perfumed soaps.

Some skin conditions, like childhood eczema (atopic dermatitis), are not caused by dirt or lack of hygiene. Therefore, parents do not need to scrub the inflamed areas. Scrubbing will cause dry, sensitive skin to become even more dry.

Tips for bath time

Some best practices for bath time for kids who have dry, itchy, sensitive skin or eczema include.

  • The proper temperature for a bath is lukewarm
  • Baths should be brief (5-10 minutes long)
  • To avoid drying out your child's skin, use mild, fragrance-free soaps (or non-soap cleansers)
  • Use small amounts of soap and wash the child with your hands, rather than scrubbing with a soapy washcloth.
  • Do not let your child sit and play in the tub or basin if the water is all soapy.
  • Use the soap at the end of the bath, not the beginning.
  • When finishing the bath, rinse your child with warm fresh water to remove the soap from their body. Let the child "dance" or "wiggle" for a few seconds to shake off some of the water, and then apply moisturizing ointments, creams, or lotions while their skin is still wet.
  • Simple store-brand petroleum jelly is a wonderful moisturizer, especially if applied right when the child leaves the tub while the skin is still wet.
  • Avoid creams with fragrances, coloring agents, preservatives, and other chemicals. Simple, white, or colorless products are often better for children's skin.
  • Do not use alcohol-based products.

Originally posted on Children's National Health System's Rise and Shine.

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