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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?

Who said motherhood doesn't come with a manual?

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I honestly can't remember how I used to organize and share baby photos before I started using FamilyAlbum. (What am I saying? I could never keep all those pictures organized!) Like most mamas, I often found myself with a smartphone full of photos and videos I didn't know what to do with. My husband and I live states away from our respective families, and we worried about the safety of posting our children's photos on other platforms.

Then we found FamilyAlbum.

FamilyAlbum is the only family-first photo sharing app that safely files photos and videos by date taken in easy-to-navigate digital albums. From documenting a pregnancy to capturing the magical moments of childhood, the app makes sharing memories with your family simple and safe. And it provides free, unlimited storage—meaning you can snap and snap and snap to your heart's delight without ever being forced to choose which close-up of your newborn's tiny little nose you want to keep.

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And, truly, the app is a much-needed solution for mamas with out-of-state family. Parents can share all their favorite memories with friends and relatives safely within the app without worrying about spamming acquaintances with every adorable baby yawn the way you might on a social network or a long text thread. (Did I mention I have a thing for baby yawn videos? I regret nothing 😍) It's safe because your album is only visible to the people you share it with. The app will even notify album members when new photos have been posted so they can comment on their favorite moments and we can preserve their reactions forever. It's also easy for my husband and I to share our photos and videos. All of our memories are organized in one place, and we never have to miss out on seeing each other's best shots.

And because #mombrain is real, I especially appreciate how much work FamilyAlbum takes off my plate. From automatically organizing photos and videos by month and labeling them by age (so I can skip doing the math in my head to figure out if my daughter was five or six months when she started sitting up) to remembering what I upload and preventing me from uploading the same photo four times, the app makes it easy to keep all my memories tidy—even when life feels anything but.

FamilyAlbum will quickly become your family's solution for sharing moments, like when you're sending a video to the grandma across the country. Grandparents need only tap open the app to get a peek into what is going on with our girls every day. When my sister sends her nieces a present, the app has become where I can share photos and video of the girls opening their gifts so she never feels like she's missing a thing. The app will even automatically create paper photo books of your favorite shots that you can purchase every month so you can hold on to the memories forever (or to share with the great-grandma who has trouble with her smartphone 😉). Plus, you can update the books with favorite photos or create your own from scratch. No matter what, the app keeps your photos and videos safe, even if your phone is lost or damaged.

But what I love most about FamilyAlbum is that it's family-first. Unlike other photo sharing platforms, it was designed with mamas (and their relatives!) in mind, creating a safe, simple space to share our favorite moments with our favorite people. And that not only helps us keep in touch—it helps us all feel a little bit closer.

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For some celebrities, pregnancy is a time to retreat from the public eye and be more strategic about what they share online. They guard their personal lives a little closer, and their social media presence gets a little more curated.

But when Amy Schumer announced her pregnancy in October, she didn't stop sharing. We saw—and heard, in some of her more graphic Insta stories—just how hard this pregnancy and the resulting hyperemesis (an extreme form of morning sickness) have been on Schumer.

Schumer's humor has always been real, and her new Netflix special, Growing, is one of the realest descriptions of pregnancy I've ever seen on my TV.

As a mom who didn't glow as much as I groaned through my pregnancy, I laughed so hard I cried. And as a mom of a child diagnosed with autism spectrum disorder, I cried tears of relief.

In one hour Amy Schumer simultaneously made me feel seen and helped me see a happy future for my son, and I can't thank her enough.

[Warning, light spoilers ahead]

Amy Schumer: Growing | Official Trailer [HD] | Netflix www.youtube.com


The Netflix description for this special describes it as "both raunchy and sincere" and that's totally accurate. If you've seen Schumer's previous Netflix special, you know you can't watch this until the kids are in bed.

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In Growing Schumer proves that pregnancy didn't make her a different person or take the curse words out of her vocabulary. She is who she is, she just happens to be becoming a mom, too.

And becoming a mom has not been easy. Schumer's description of yeast infections, and vomiting and hemorrhoids and all the parts of pregnancy that nobody puts on a felt letter board gave me flashbacks and validation.

In Growing, Schumer is saying that it's okay not to love being pregnant and that it doesn't mean you don't love that baby growing inside you. It's a message more women need to hear because it's hard to see photo after photo of smiling mamas sporting cute bumps and wonder if you're the only woman who doesn't love feeling someone sit on your bladder.

That feeling (the emotional one, not the bladder one) made me feel alone in my pregnancy, but it's been three years since I wondered if there was something wrong with me. These days, I'm more worried about whether my son, who is now a preschooler, will grow up to think there's something wrong with him.

As the mother of a kid on the spectrum, I gasped when Schumer explained that her husband, Chris Fischer, is too. I sobbed when she described some of her husband's quirks, because I see them everyday in my son.

I don't want to spoil the special too much, but let me tell you this: In revealing that her husband, the father of her future child, is on the spectrum, Schumer gave me so much hope.

I'm so grateful that Schumer (and Fischer, who must be on board with this) shared that bit of info because sitting there in front of my TV all the versions of my son's future that got erased when we got our ASD diagnosis came flooding back.

I could see him as a grown man, and he wasn't alone. He was falling in love with a partner like Schumer. He was becoming a father like Fischer. He was happy (and different, in the way Schumer describes her husband) but he wasn't alone.

Schumer's trademark raunch isn't for everybody, but her authenticity and vulnerability sure is for me. For 60 minutes I watched a woman stand alone on a stage and I felt less alone.

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Over the years, switching to nontoxic products has become a popular trend. But, as moms ourselves, we understand how overwhelming it can be to consider a lifestyle change. We founded Branch Basics with the idea that simple swaps in your cleaning closet could be the jumpstart to living chemical-free.

For many people, the swap has been influenced by various headlines. One study compared cleaning your home with conventional products to smoking an entire pack of cigarettes every day. Additionally, the EPA has reported that indoor air quality is actually worse than outdoor air quality.

With every reason to make the swap, here is a beginner's guide to non-toxic home cleaning. We call this process our Clean Sweep with just three simple steps.

1. Review

Pull out all of the cleaners (and pesticides) you currently have in your home. Yes, even the dusty ones deep in the back of the cabinet! Once you have these out, review them for red flag words, like "caution, warning or danger."

Cleaning companies are not required by law to list their ingredients, so any cleaners that are not transparent about their ingredients should be taken out of your home. Remove anything with parfum or fragrance, as the word fragrance represents a fragrance recipe that may have never been tested for safety. (Pro tip: You can use essential oils to make scents you like.)

Other common ingredients to avoid are:

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  • Perchloroethylene or "PERC"
  • Quarternary Ammonium Compounds, or "QUATS"
  • 2-Butoxyethanol
  • EPA registered pesticides like Chlorine
  • Methylisothiazolinone "MIT"
  • Benzisothiazolinone "BIT"
  • Any of the Isothiazolinone family
  • Ethoxylated Alcohols

Finally, toss your dryer sheets and fabric softeners if they're loaded with carcinogens such as dichlorobenzene and benzyl acetate, respiratory irritants such as chloroform and benzyl alcohol, neurotoxins like linalool and ethanol, and endocrine disruptors such as phenoxyethanol and phthalates.

For any ingredient you are unsure of or don't recognize, the internet has great resources like the Environmental Working Group's (EWG) Guide to Healthy Cleaning, where you can look up health ratings from 1-10 (1 being the safest to 10 being the most toxic).

Another excellent tool is the Think Dirty® app, an easy way to evaluate ingredients in your beauty, personal care and household products. Just scan the product barcode and it will give you easy-to-understand info on the product and its ingredients. We recommend that household products have ingredients rated A on EWG's Guide to Healthy Cleaning or a zero on Think Dirty.

2. Remove

If you find products that have toxic chemicals in them, remove them from your home. If you aren't ready to part with some of your products, put them in an airtight Sterilite container in your garage or backyard. This simple act of removal will improve your air quality immediately.

3. Replace

Now it's time to streamline. Do some research and find items that are plant-based or otherwise naturally-based. Branch Basics offers a variety of nontoxic alternatives to popular household products, like laundry detergent and bathroom cleaner. The Honest Company created safe baby and beauty products. And Beautycounter provides safer skin care and cosmetics. You can even scour the internet for resources for homemade alternatives, too. If it feels overwhelming, start with your most-used products and work your way down the list.

Switching to nontoxic cleaning supplies is one of the easiest ways to start creating a healthier home and there's so much information out there that can walk you through what should and shouldn't be in your products. Simple swaps can make a big difference for your family.

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You know that you want to raise your children differently than how you were raised—with compassion and connection, instead of punishment and reward. Except the only thing is, friends and extended family just don't seem to get your parenting choices.

You can feel their spoken and unspoken judgments, and it's really putting you on edge, but you don't want to have uncomfortable conversations or tension. So what do you do, mama?

Here are 10 positive phrases you can say to family and friends who just don't seem to get your parenting.

1. "I appreciate how much you care about our kids, but I'm really happy with how we're doing it."

This response finds the common ground. Both of you care deeply about your children, and that's the main thing to acknowledge. It sets a limit and lets the other person know you are not looking for help and advice, but appreciate their intention.

2. "I've thought and read a lot about parenting and I'm really happy with what I've learned."

Parenting nowadays can look pretty different from how it was in previous generations, and there are so many resources giving contradictory advice. A friend or relative may make the mistaken assumption that you are doing it all wrong simply because it's not how they did it, or are doing it. This response lets them know you have made a thoughtful choice.

Gently pointing out that you have read and thought about their parenting style may surprise them. Perhaps your confident response may even make them curious about what you have read, and why you decided it's the right way for you to parent.

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3. "We've tried different methods, and this is what works best for us."

Let your friend or relative know that you aren't looking for advice, you've tried different styles of parenting and are content with what you're doing.

4. "We find that they're more responsive when we set limits gently."

If you are taking the more peaceful route, then you'll find that it's pretty common for parents to mistake gentle parenting with permissive parenting. Pointing out that you are setting limits, even if they look a little different, can be reassuring to a relative who thinks you are not in control.

5. "I've noticed that if we listen to the crying rather than distracting or ignoring them, then they let out their feelings and are less likely to be upset later."

A lot of people have a huge misunderstanding about crying. They think of it as a negative that needs to be stopped instead of as a healthy and healing way to express emotions. This is a simple way to tell them that there is a purpose in allowing feelings, and it's actually better in the long run for your family.

6. "Every family is different, but this is what works best for us."

Parenting differences can often bring up strong feelings between friends because one person may assume you are judging them and think that what they're doing is wrong. Acknowledging that every family is different is a peacemaker. It shows that choosing a different path doesn't mean you are judging or critical of others, and you get that everyone makes different choices.

7. "Kids are so different. This is how my child responds best."

Everyone is the best expert on their family and what their children need. Nobody on the outside looking in can tell you how to parent. This phrase lets the other person know that what you are doing is based on what your understanding of what your child needs and ensures they won't need an explanation.

8. "Don't worry, I can handle this!"

If a friend or family member wants to step in and parent for you, this is a polite way of saying "no thanks."' A lot of people aren't comfortable around big emotions so perhaps they see your child crying and want to give them a lollipop to cheer them up.

This phrase gently lets them know they don't need to fix or solve the situation. It can be reassuring to them that despite the wild emotions of your child (or their challenging behavior), that you are feeling calm and under control.

9. "Thanks for your advice. I'll give it some thought."

This is a conversation closer. It lets the person know they've been heard and you aren't just dismissing what they say. But it also ends the debate, so it's perfect to use with someone you know will never understand what you're doing.

10. "I guess this must look a little different to how you were parented?"

This might not always be appropriate, but if the timing seems right it can open up a discussion about the roots of why the other person might feel the way they do about parenting. Sharing stories about how you were parented can help both come to an understanding that everyone chooses their own parenting path based on their own complex histories, and personal choices.

It also gives the other person a chance to express how they feel about their own childhood, which can help them feel heard, and more relaxed and flexible in their attitude to how you are parenting.

Plus one more that isn't a phrase: Just listen.

Sometimes, no response is needed. Often when people give advice or have strong feelings towards other people's parenting, it's because they feel a sense of responsibility. Perhaps your children's big emotions triggered memories from their childhood, and how they would have been treated if they acted out or expressed themselves.

In those moments, their unheard feelings get ignited and they respond from their own sense of hurt. It can be helpful just to listen to them, to accept that their reaction has nothing to do with you and your parenting, but is about their own history.

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Motherhood is a journey with highs so high so you'll remember them forever, and lows so low you'll curse the day away. I'm still navigating these uncharted waters and just when I feel like the sea has steadied, the water turns choppy again.

My days are filled with uncertainty as we discover more about what's beneath this sweet boy of mine. I know he is smart, strong, passionately curious, compassionate and spirited. What I'm still learning, though, are the differences that make him unique. It's difficult to describe what it's like to be a parent of a spirited child. The answer depends on the day, the task, the weather—the answer is always changing.

Our days ebb and flow, like waves of the ocean. They swell with enjoyment and eagerness and then naturally fade through periodic episodes of misunderstanding and confusion. Attachment and connection, followed by detachment and disconnection. Up and down, back and forth, give and take, push and pull.

My strong-willed child keeps me on my toes, but when I'm able to lift the hood, I can really see what's going on in with his engine. His spirited nature has brought brightness to my life. He is a child of high standards, but is an absolute delight. He is sweet and generous, creative and bright.

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Here are the joys I've learned from parenting a spirited child:

1. His curiosity is a good thing and it reminds me to slow down.

He's always interested in how things work and asks a lot of questions—oftentimes, he tries to figure it out on his own. His senses are keen, and his observations are imaginative and rich. Our five-minute walk to school quickly stretches to 15.

On our way, he'll notice the grasshopper sitting alone on a single branch and the intricate spiderweb laced in the bush nearby. He notices the beautiful colors of the flowers and the leaves changing in the fall.

He'll look up at the sky and see a heart-shaped cloud and hear the distant sound of a siren. He'll notice when one of my shirt buttons is unbuttoned and the single strand of hair on my sleeve. His mind never stops because he is always seeking out knowledge and gathering the data in his mind.

2. His compassion for others and empathy for his friends is admirable.

When he feels, he feels hard. When he expresses love for his baby brother, I'll catch him gently patting his back and giving him a soft embrace, followed up with a kiss and a whisper saying, "I love you."

He once saw his friend fall off her tricycle on the playground and quickly jumped off his and rushed over to make sure she was okay. Every ounce of his body and soul is poured out in those moments. The intense, passionate emotions add depth to my life and make me want to be a better person.

3. He never gives up.

He is determined, tenacious, and will not take "no" for an answer. And if we do say "no," he'll find another way to get a "yes." He's not intimidated by adults or peers and is confident in who he is and what he can do.

At soccer practice, he is the first in line to practice short drills and will run himself ragged until he scores a goal. During our morning school routine, he is the master of negotiation and can somehow convince me he's too full to eat the banana on his plate but not too full to finish off the glass of orange juice.

He is strong-willed and headstrong, qualities I know will serve him well in the future. He wants to learn on his own and test his own limits.

Parenting a spirited child is hard, but it's also rewarding. While it may be a frustrating and exhausting endeavor, I take comfort in knowing that he will grow up to be a leader.

He will be resilient and passionate, focused and unafraid to speak his mind. I don't want him to blend, I want him to shine. I want him to march through life, and not just add to the noise. I want him to love his spirit always, in all ways.

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