A modern lifestyle brand redefining motherhood
Print Friendly and PDF

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?

The very best of Motherly — delivered when you need it most.

Subscribe for inspiration, empowering articles and expert tips to rock your best #momlife.

Already a subscriber? Log in here.

We spend a lot of time prepping for the arrival of a baby. But when it comes to the arrival of our breast milk (and all the massive adjustments that come with it), it's easy to be caught off guard. Stocking up on a few breastfeeding essentials can make the transition to breastfeeding a lot less stressful, which means more time and energy focusing on what's most important: Your recovery and your brand new baby.

Here are the essential breastfeeding tools you'll need, mama:

1. For covering up: A cute nursing cover

First and foremost, please know that all 50 states in the United States have laws that allow women to breastfeed in public. You do not have to cover yourself if you don't want to—and many mamas choose not to—and we are all for it.

That said, if you do anticipate wanting to take a more modest approach to breastfeeding, a nursing cover is a must. You will find an array of styles to choose from, but we love an infinity scarf, like the LK Baby Infinity Nursing Scarf Nursing Cover. You'll be able to wear the nursing cover instead of stuffing it in your already brimming diaper bag—and it's nice to have it right there when the baby is ready to eat.

Also, in the inevitable event that your baby spits-up on you or you leak some milk through your shirt, having a quick and stylish way to cover up is a total #momwin.

2. For getting comfortable: A cozy glider

Having a comfy spot to nurse can make a huge difference. Bonus points if that comfy place totally brings a room together, like the Delta Children Paris Upholstered Glider!

Get your cozy space ready to go, and when your baby is here, you can retreat from the world and just nurse, bond, and love.

3. For unmatched support: A wire-free nursing bra

It may take trying on several brands to find the perfect match, but finding a nursing bra that you love is 100% worth the effort. Your breasts will be changing and working in ways that are hard to imagine. An excellent supportive bra will make this so much more comfortable.

It is crucial to choose a wireless bra for the first weeks of nursing since underwire can increase the risk of clogged ducts (ouch).The Playtex Maternity Shaping Foam Wirefree Nursing Bra is an awesome pick for this reason, and because it is designed to flex and fit your breasts as they go through all those changes.

4. For maximum hydration: A large reusable water bottle

Nothing can prepare you for the intense thirst that hits when breastfeeding. Quench that thirst (and help keep your milk supply up in the process) by always having a water bottle with a straw nearby, like this Exquis Large Outdoor Water Bottle.

5. For feeding convenience: A supportive nursing tank

Experts recommend that during the first weeks of your baby's life, you breastfeed on-demand, meaning that any time your tiny boss demands milk, you feed them. This will help establish your milk supply and get everything off to a good start.

What does this mean for your life? You will be breastfeeding A LOT. Nursing tanks, like the Loving Moments by Leading Lady, make this so much easier. They have built-in support to keep you comfy, and you can totally wear them around the house, or even out and about. When your baby wants to eat, you'll be able to quickly "pop out" a breast and feed them.

6. For pain prevention: A quality nipple ointment

Breastfeeding shouldn't hurt, but the truth is those first days can be uncomfortable. Your nipples will likely feel raw as they adjust to their new job. This will get better! But until it does, nipple ointment is amazing.

My favorite is the Earth Mama Organic Nipple Butter. We love that it's organic, and it is oh-so-soothing on your hard-at-work nipples.

Psst: If it actually hurts when your baby latches on, something may be up, so call your provider or a lactation consultant for help.

7. For uncomfortable moments: A dual breast therapy pack

As your breasts adjust to their new role, you may experience a few discomforts—applying warmth or cold can help make them feel so much better. The Lansinoh TheraPearl 3-in-1 Breast Therapy Pack is awesome because you can microwave the pads or put them in the freezer, giving you a lot of options when your breasts need some TLC.

Again, if you have any concerns about something being wrong (pain, a bump that may be red or hot, fever, or anything else), call a professional right away.

8. For inevitable leaks: An absorbing breast pad

In today's episode of, "Oh come on, really?" you are going to leak breastmilk. Now, this is entirely natural and you are certainly not required to do anything about this. Still, many moms choose to wear breast pads in their bras to avoid leaking through to their shirts.

You can go the convenient and disposable route with Lansinoh Disposable Stay Dry Nursing Pads, or for a more environmentally friendly option, you can choose washable pads, like these Organic Bamboo Nursing Breast Pads.

9. For flexibility: A breast pump

Many women find that a breast pump becomes one of their most essential mom-tools. The ability to provide breast milk when you are away from your baby (and relieve uncomfortable engorged breasts) will add so much flexibility into your new-mom life.

For quick trips out and super-easy in-your-bag transport, opt for a manual pump like the Lansinoh Manual Breast Pump .

If you will be away from your baby for longer periods of time (traveling or working outside the home, for example) an electric pump is your most efficient bet. The Medela Pump In Style Advanced Double Electric Breast Pump is a classic go-to that will absolutely get the job done, and then some.

10. For quality storage: Breast milk bags

Once you pump your liquid gold, aka breast milk, you'll need a place to store it. The Kiinde Twist Pouches allow you to pump directly into the bags which means one less step (and way less to clean).

11. For keeping cool: A freezer bag

Transport your pumped milk back home to your baby safely in a cooler like the Mommy Knows Best Breast Milk Baby Bottle Cooler Bag. Remember to put the milk in a fridge or freezer as soon as you can to optimize how long it stays usable for.

12. For continued nourishment: Bottles

Nothing beats the peace of mind you get when you know that your baby is being well-taken of care—and well fed—until you can be together again. The Philips Avent Natural Baby Bottle Newborn Starter Gift Set is a fan favorite (mama and baby fans alike).

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

Our Partners

[Editor's Note: Welcome to It's Science, a Motherly column focusing on evidence-based explanations for the important moments, milestones, and phenomena of motherhood. Because it's not just you—#itsscience.]

If you breastfeed, you know just how magical (and trying) it is, but it has numerous benefits for mama and baby. It is known to reduce the likelihood of developing cardiovascular disease, type 2 diabetes, and rheumatoid arthritis, and cuts the risk of sudden infant death syndrome (SIDS) by half.

If this wasn't powerful enough, scientists have discovered that babies who are fed breast milk have a stomach pH that promotes the formation of HAMLET (Human Alpha-lactalbumin Made Lethal to Tumor cells). HAMLET was discovered by chance when researchers were studying the antibacterial properties of breast milk. This is a combination of proteins and lipids found in breast milk that can work together to kill cancer cells, causing them to pull away from healthy cells, shrink and die, leaving the healthy cells unaffected.

According to researchers at Lund University in Sweden, this mechanism may contribute to the protective effect breast milk has against pediatric tumors and leukemia, which accounts for about 30% of all childhood cancer. Other researchers analyzed 18 different studies, finding that "14% to 19% of all childhood leukemia cases may be prevented by breastfeeding for six months or more."

And recently, doctors in Sweden collaborated with scientists in Prague to find yet another amazing benefit to breast milk. Their research demonstrated that a certain milk sugar called Alpha1H, found only in breast milk, helps in the production of lactose and can transform into a different form that helps break up tumors into microscopic fragments in the body.

Patients who were given a drug based on this milk sugar, rather than a placebo, passed whole tumor fragments in their urine. And there is more laboratory evidence to support that the drug can kill more than 40 different types of cancer cells in animal trials, including brain tumors and colon cancer. These results are inspiring scientists to continue to explore HAMLET as a novel approach to tumor therapy and make Alpha1H available to cancer patients.

Bottom line: If you choose to breastfeed, the breast milk your baby gets from your hard work can be worth every drop of effort.

You might also like:

Life

Dear friend,

I sat across from you today. You are struggling, you are tired.

As I looked into your eyes I recognized the exhaustion and the fear. I recognized the question, the one that asks, "Am I going to be okay?" I remembered a dark season in my life. I remembered when I was so undone with anxiety that I couldn't take the kids to the beach or even make it out of the house.

I remembered when I had no hope.

I remembered a friend who showed up every single day on my doorstep.

She'd ask,What are you afraid of today?" I'd tell her and she'd listen. She'd really listen…that was the gift. When I'd run all out of words I would sit shaking on my porch trying to feel the sun that beat down all around me but never touched my skin.

Then she would say, You are okay, your kids are okay. This is just fear and anxiety." And I would cry until all the tears were gone.

And the next day she'd be back because I'd already forgotten the truth.

Sometimes we need truth holders in our lives because our grip is not strong enough.

Sometimes we need to stand with each other until the sun comes up.

Right now, you are low. Right now you feel like a fragmented version of yourself. It's okay to fall apart. When you are low, others are high. When you are broken, others are okay.

We have all been undone. We have all been undone and then we get put back together piece by piece, and when we find someone else who is suffering we understand deeper and wider. We can hold space for them because we get it.

So, friend, I take your hand, like she took mine because we will walk through this together.

There have been so many times in the past I've watched friends suffer from a distance because I wasn't sure what to say and I was afraid of making it worse. I made their pain about me, and I still cringe when I think about it. I wish that I'd showed up. I wish I'd been brave.

I'm done letting my fear keep me from staying close.

I will not do it perfectly—in fact, sometimes I might do it awkwardly and terribly. I will probably say the wrong thing. I will probably make you mad.

I'm okay with that now.

I will listen to you until you're all out of words. I will listen, and I will listen and then I will take your hand because you are not alone.

I will take your hand because you are going to be okay.

Whatever you do, do not forget that there are songs still left to sing. There are joyful moments coming around the corner that will take your breath away. This, my friend, feels like everything. It feels all consuming and that hope won't ever come, but it's not true…

The sun will come up.

You will laugh again. You will laugh so hard that your stomach aches and tears spill out. I promise. Things will be funny again.

You will have moments again when you hold your kids and your heart breaks into a million pieces because your love is fuller and more overwhelming than you ever knew it could be.

Those are the moments that it is worth hanging on for. They are the moments that are worth more than a thousand years of everything.

Someday, you will be past this and you will look back and thank God that you're on this side of the storm, and then you will thank yourself because it turns out you are stronger than you knew.

Joy is coming.

It can't resist you. You can't resist it. Even when everything is so dark and dingy and hopeless, hang on, because it will come.

For now, when you can't hope, I will hope for you.

When you can't see, I will see for you.

And one day soon you will feel the sun again on your own.

Love,

Your friend

You might also like:



Love + Village

Dear second child,
I blinked, and three weeks have passed since I brought you into our world.

As the second-born, you get the privilege of not being the "guinea pig." The mistakes I made at the beginning of my journey into life with a newborn I (probably) won't make with you (though new "mom of two" mistakes will inevitably be made along the way).

This time around, I know that if you have the hiccups 10 times a day, I don't have to call the doctor to ask if you'll be okay.

If you spit up a little after every meal, I don't have to worry that you're not eating enough.

If you've never slept longer than a two-hour stretch in your short little life – and if you're still not sleeping through the night at one year old – that there's nothing wrong with you, and that this too shall pass.

But, also as the second babe to join our family, I quickly realized that my attention has been divided from the moment I knew I was pregnant, and even more so the moment you were born.

This time around, I can't hold you like I did your older brother—as often as I want or whenever I want. I put you down when you're crying or unsettled more times in a day than I'd like to because your older brother spilled his breakfast all over his clothes and needs help getting changed.

Your nursing sessions are often interrupted because there was a loud crash in the other room and your brother? Well, he was far too quiet for far too long.

You get passed around from person to person, not because I don't want to be the one who gets to hold you and comfort you, but because this transition has been hard on your older brother and he needs his mama, too.

Before you were born, I wondered how it would be possible to love two little humans as much as I already loved your brother. But, the moment you were born, my heart doubled in size just for you.

So my sweet second-born, despite the fact that you'll probably always have to fight a little harder to get my attention and be a little louder in order to be heard, I want you to know that I love you, too.

I love your newborn smell and the way you calm down the instant you're in my arms.

I love the way your arms always seem to find a way to free yourself of a swaddle, and the way the single dimple on your right cheek appears along with a little smile when you're dozing off to sleep.

I love the way a bath always calms you down and I even love waking up with you all hours of the night because, this time, these are some of the precious only moments we get to spend uninterrupted—just you and me.

In this ever-evolving journey of motherhood, I've quickly learned to savor all of the moments - the good and the bad. I look at your brother, a walking, talking, beautifully chaotic mess of a toddler, and wonder how two years passed by so quickly. I look at him and realize that every moment—especially the 3 a.m. feed and fussing that follows—is one to be cherished because it simply won't last.

So thank you, my sweet second-born, for this new perspective on motherhood. We've only just met you, but you fill our home and our hearts in ways that only you can. You add more joy and meaning to our days, and you've brought more love into our family in ways that only you, as our second-born, can.

So, my precious second-born: you may not know it yet and it may not always feel like it, but I want you to know that I see you, I hear you, and I love you, too.

Love,
Mama

You might also like:

Life

We are almost into Pumpkin Spice season—this summer, this month and this week have flown by! But don't worry, we've been taking note of the good news stories you need to read when you have a moment to slow down.

Grab a coffee and get comfortable, mama, because these are the headlines that made us smile this week:

This kindergarten father is total #dadgoals

As Today reports, dad Jamie DeSpain is going viral for making his kindergarten daughter's day by taking her stuffed cat, Sophia, to work with him and putting her to work.

DeSpain's oldest daughter, Hadley, had been taking Sofia the cat with her to school as she made the big leap into kindergarten this month, but last week her dad realized she'd forgotten Sofia in the van when he'd dropped her off at school. DeSpain didn't want to cause an interruption at school, so he just brought Sofia into work with him and began texting his wife, Erica, photos of Sophia doing work around the office.

"I kind of have a goofy streak and Hadley really appreciates goofiness," Jamie DeSpain, who lives in Madison, Alabama, told Today Parents. "Combine that with her love for stuffed animals...[it] made for the perfect dad setup."

He took pics of Sophia taking phone calls, doing emails, having coffee and even having a pensive look out the window, which DeSpain captioned: "wondering what Hadley is doing."

When dad got home, his daughter was thrilled with her stuffed animal's big day out and was happy to be reunited with both her father and Sofia. Hadley was so thrilled with the experience that she asked her dad to repeat the mission the next day with her stuffed dog, Mocha. The cotton-filled canine was spotted doing various office tasks and, of course, drinking some coffee. 😂

Hadley's mama says her husband's antics were a welcome bit of fun and helped the family remember that while kindergarten is a big step, Hadley's still a little kid (and it seems her dad is too, at least at heart).

"Sending Hadley off to kindergarten has been a big transition for us as a family, but this activity reminded us that she's still little," Erica DeSpain said."We want to soak up that childlike wonder as much as we can, and this activity was a great way to do just that."

We think office buildings are about to see an infestation of stuffed animals!

This father's viral Instagram video is total #dadgoals

Father Jimmy Howell has gone viral for giving his 9-month-old daughter Kensley an adorable pedicure.

"She got a little crazy with me today due to the fact that I was filing her nails a little too rough, y'all see why I can't do anything for free, I'm charging her next week, just watch," he captioned the video he posted to Instagram.

"Kensey, this is free," He jokes in the video after Kensley seems to protest the spa service for moment. 😂

With the power of dad humor, Howell not only got the baby's toes clipped (which is hard to do!) but got her laughing, too. He says he has weekly "spa talks" with his daughter, so it's no wonder his baby nail skills are so on point.

Viral kindness: "Please ask me if I have sunscreen" 

We have all been there—sometimes you're the one who needs an extra diaper and sometimes you're the one who has one to give. The point is, every parent needs help sometimes and most are happy to pay it forward when it is their turn to give a diaper to a stranger in need.

Wisconsin mom Shelby Beck captured this perfectly in a Facebook post this week after she went to the park with her daughter and a fellow mama had to ask her for a favor.

When the stranger approached Beck, she could tell she was uncomfortable. "She shrugged her shoulders and quietly said 'I'm embarrassed to even ask, but do you happen to have sunscreen we can use?' As if she was somehow ashamed that she forgot to pack sunscreen today." Beck wrote.

She continued her Facebook post with an open letter to parents who find themselves in the same situation as the sheepish stranger.

"Dear fellow mamas,

Please ask me if I have sunscreen. Ask if I have baby wipes, diapers or even extra snacks.

Ask me if your toddler can sit down and play with us while you find a shady bench to nurse your newborn.

Hand me your phone and ask me to take a picture of you with your sweet babies - we all know mamas aren't in enough photos.

Ask for help. Ask for love. Ask for anything.

Even though we are strangers, please ask me.

It's not easy being responsible for little humans but it's easier if we help each other out.
We're all in this together.❤️"

We could not agree with Shelby more. Mamas helping mamas is a beautiful thing (and asking for sunscreen could even lead to making a mom friend!).

Oh, and one last thing...

Oh, and if you need a good cry this weekend, check out this viral Michael Bublé video that has parents everywhere crying about our kids growing up. Team Motherly could not get through it without sobbing! Just like summer, their childhoods will be over before we know it so take some time to connect with your babies this weekend. They're off to kindergarten today—off to college tomorrow! 😭


You might also like:

News
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.