Imperfect Model

by Kerri Ames

(The following was written and performed by Kerri for the recent Listen to your Mother Boston show. It is republished here with Kerri’s permission. You can – and should – read more on her blog (Un)Diagnosed and Still Okay.)

Photo credit: Amy/Emily Photography

Photo credit: Amy/Emily Photography

I used to pity parents whose child had a disability. I would see them in a restaurant, a movie theater or other public outing and think to myself: “Thank God that is not my child”.

I used to say the word, retard. A lot. As in “I’m so retAHded”, “stop being retahded”, the list goes on.

I would think to myself, God how awful for them. The parent’s whose child was in a wheelchair, had a feeding tube or a breathing tube. Wondering what made them decide to let the child live.

I would see a child having a temper tantrum in the grocery store and whisper to my husband, why don’t they just smack that kid.

I had my first, perfect child and became the paragon of how to be a working mother. I knew the answers to putting the baby to sleep at exactly 7pm. I let her cry it out and slept through the night. I had a schedule. I was that model working mom. The one you read about in magazines. The one who “does it all”, showers daily and who kept a clean house. Abby was well behaved, well-traveled and the child you could take to any event.  I could leave her with anyone for any amount of time. The girl, who sat quietly in restaurants, did her school work and reinforced my thoughts that “those other” children were just a result of poor parenting.

Five years later, my second daughter was born.

At just four days old I found myself in the NICU as I begged the doctors to do anything to save her life. I didn’t question brain function. I didn’t wonder if we were taking extreme measures. I saw my baby and feared she wouldn’t come home.

I bargained with God.

I offered my soul. I told him I could handle a retarded child. Just please, God, let my child live.

We came home with a beautiful little girl. One who vomited every 20 minutes, one who would only sleep if she was snuggled on your chest and who cried. A lot. If she was awake, she was crying, unless she was being held.

So I held her.

Bridget wasn’t achieving her milestones and the doctor ordered testing of her brain. We knew she was different. That she wasn’t the perfect child you dream. They performed genetic testing and told us she had a genetic mutation that had never been discovered. The testing revealed a slow brain pattern.

I asked, “Is my daughter retarded?” and I was gently told, “We don’t use that word anymore. But essentially, yes.”

The best advice I received that day was to never put limits on Bridget. Do not limit her with labels or assume she would not achieve greatness. That perfection has a new meaning.

One of the greatest things Bridget has achieved is changing the world view most of us have. We have more empathy for that mother in the grocery store. We have a smile for the parent who is pushing their child in a wheelchair. We buy a glass of wine for that mom in the restaurant. We look at our disabled child and think, “Thank God this IS our child”.

We have banned the “R” word in our house and in our lives.

Bridget has changed the lives of not just her parents, but her community. She is the mayor of her school. She is hugged in the grocery store. She has allowed friends to be comfortable asking questions. Hard and difficult questions just six years ago I would have been embarrassed to ask.

When I was told my daughter would be developmentally disabled, the world I knew was destroyed and recreated. I resolved that this would not change the way I would nurture my daughter, that she would be provided the same experiences and opportunities as her sister. By not placing limits, Bridget has created an advocate in her sister.  She has given an 11 year-old a purpose and a drive. One who includes her sister in everything because, in Abby’s words, “that is what sisters do”.

I have grown in so many ways since that first day in the NICU. I will educate when someone says retard.  I have become knowledgeable in any treatment, medication, therapy or doctor who can positively impact Bridget. It was through motherhood I learned the value of friendship, and which of those friends to leave behind.  Being Bridget’s mother has allowed me to find my voice.  We have created a village of support that includes therapists, friends and families who understand that life with a child who has special needs is still a fantastic life.  A life where the smallest accomplishments are celebrated.  A life where we cry and laugh with equal measure.

I am no longer that perfect model of the working mother who can do it all. Motherhood trumps meetings.  I frequently go a day without a shower, happy that I managed to brush my teeth. My house is rarely clean, but it is full of life.

Six years ago I bargained with God to let my daughter live.

It took being Bridget’s mom to show me what living was.

Kerri Ames is a working mom from Cape Cod with her husband, two daughters, untrainable dog and a bunny who was supposed to live outside. Kerri writes about raising two children, one whom has a rare genetic disorder, with humor and honesty at (Un)Diagnosed but Still Okay. Kerri possesses many titles: mom, wife, advocate, business manager, writer, trail runner and lover of wine. Her passion is advocacy for all children to be accepted for who they are regardless of ability. Kerri believes you can conquer any challenge in this world with good friends, family and a bonfire on the beach. She acknowledges that without her village of support her life would be infinitely more difficult.  You can follow Kerri on Facebook and Twitter at @undiagnosedbut.

 

The Gene My Mother Didn’t Give Me (Now With Video)

(This is the story I read at the recent, amazing Listen to your Mother show)

Today I cooked for my family and nobody died.

It’s always a good day when my cooking doesn’t maim, injure or kill. Because every time I cook, I am convinced that someone will turn pale, clutch his or her belly, foam at the mouth and then sprint for the bathroom. Or just keel right over.

Needless to say, I am not a natural in the kitchen. I try. After all, I’m a Mom. This is part of the job description, right? It’s supposed to be part of my maternal DNA.

I definitely did not inherit the cooking gene from my Mom. She’s the world’s greatest cook. I yearn for her meatloaf and cheesecake. When I’m sick, her chicken soup is the only medicine that heals. Her trifle is legendary in England. I have fond memories of helping her measure and stir, as she’d prep and bake. Osmosis, however, failed me.

Like me, she wasn’t actually a natural-born cook. But once married, my Mom experienced a culinary metamorphosis, blossoming into this competent, fearless creator of deliciousness. Hoping to nurture similar qualities in me, my parents sent me to an all-girls school. Alas, while I did well academically, my grades for “domestic science” were well below average.

Fast-forward to my 30’s. One evening, I invited my soon-to-be-fiancé over to my place, intent on making a romantic meal. I prepared the only dish I really knew. He wanted to hang with me in the kitchen, sizing up my qualifications for future wifedom, motherhood and domesticity. But he quickly recoiled when he saw that every ingredient was either from a can, a carton or the freezer. Mortified, I banished him from the kitchen.

Did I mention he’s a professionally trained chef? No pressure, right? Well, despite his horror at my pasta mush, he still married me. Maybe he thought my culinary skills might emerge, like they had for my mom? Fortunately, our relationship is based on many other qualities, like good humor and forgiveness.

These days, I can be inspired by a recipe, game to give it a go and expose my family to something new. I’m all about Pinterest. My “recipes to try” board has more than one thousand pins of culinary delights. I’ve attempted about three of them. My success rate is, well, low. Usually the end result looks nothing like the picture. It might taste good but my kids usually turn their noses up when served something that looks, smells and tastes suspiciously different from chicken tenders or mac and cheese. My husband, bless him, praises my efforts, chews his meal with enthusiasm and makes all the right “mmmm” noises. He coaxes the kids to try at least a bite. The silver lining? Plenty of leftovers.

It wasn’t always this way. When they were infants, they ate everything I cooked. Yes, cooked. I was really really good at making purées. Because, boiling and mushing stuff, that I can do – like a pro. And, since I wasn’t able to nurse my kids when they were infants, preparing food this way made me feel like mother of the year, all wholesome and nurturing. I was an over-achiever in the purée department; my fridge filled with baggies of green, yellow, even purple frozen cubes of homemade nutrition. My kids willingly consumed vegetables that today are considered devil spawn. Beets. Parsnips. Spinach. Even black beans. It was good while it lasted.

I’m happy to tell you that one of my cooking adventures has in fact become the stuff of legend on social networks. Allow me to introduce you to the Hippo Cake.

It was Rosh Hashanah and like all Jewish festivals, it’s celebrated with food. A few days before, I called my mother and asked for her wonderful honey cake recipe, thinking it was my maternal duty to bake one for my family at this auspicious time of the year.

I’ll never know what really went wrong. Did I confuse the measurements? Maybe I omitted the baking soda? Perhaps the oven was the wrong temperature (after all, British recipes are in Celsius not Fahrenheit)?

Never has a photo posted on Facebook received so much attention. “What is that?” was the most frequent comment. “Um, it’s a honey cake,” I’d respond. “It looks like a hippo,” quipped someone and everyone resoundingly agreed. And so the notorious Hippo Cake was born. Every year now, friends and family clamor for me to re-post the Hippo Cake photo on Facebook, claiming that the holiday cannot properly commence until I do.

So this is what it comes down to. I can bake cakes that look like animals and purée like a champ. Evidently, as a mother, cooking is not my strongest suit. But at least I haven’t killed anyone. They say genes can skip a generation, so I’m hoping my kids will inherit their quick wits, good looks and self-deprecating humor from me – and their cooking skills from their grandmother.

The infamous Hippo Cake

The infamous Hippo Cake

LTYM cast

The wonderful cast of #LTYM Boston – May 9, 2015

 

The Listen to your Mother Show: A Preview

What’s the one thing we all have in common other than, you know, breathing?

It’s mothers.

We all have – or had – mothers. Be they birth mothers, adoptive mothers, foster mothers, step mothers, grandmothers. Some families have two mothers. Some families have two fathers.

Many of us are, or were, mothers. Dealing with all the highs and lows that come with the title.

Some of you aspire to be mothers. Some of you became accidental mothers. Some of you really don’t want to be a mother. Some of you did, but life took a different course. Some of us are working mothers; some of us are stay at home mothers. Some of us are married; some of you aren’t. Some of us are divorced or separated from our partners. Some of us have infants. Some of us have toddlers. Some of us have teens. Some of our kids have grown up and become parents themselves. Some of our kids are healthy; some have disabilities.

We are all sons and daughters. We all have or had relationships with our mothers. Good, bad or otherwise. Some of us aspire to be like our mothers. Some run in the opposite direction.

Motherhood is a universal reality – wherever you fit in this spectrum.

On Saturday May 9 at 2pm, 12 women from in and around Boston will step up to the microphone at Boston’s Old South Church to share their stories of motherhood. These remarkable, talented writers are daring. They are strong. They are eloquent. They are nervous. They are entertaining. They are emotional.

I’m one of these women. And I can’t wait to share my story with you.

I hope you’ll attend this amazing event. I guarantee you’ll be riveted. I fully expect you to shed a tear. I’m hoping you’ll laugh. You may even learn something. I know that you’ll see reflections of your own story in every shade of the rainbow of motherhood and you’ll be grateful that you came.

Buy your tickets here or at the door.

See you there!

Giving motherhood a microphone

Boston’s Listen to your Mother show is on May 9

 

Thank You, Taylor Swift, for the Parenting Advice

I’m a big Taylor fan and not just for her toons. Mostly because “Shake It Off” has become the most awesomest parenting tool.

Her popular song has helped me reinforce some key messages with my kids. Stuff parents have said throughout the ages – but somehow now, with the Taylor seal of approval, now the kids are listening.

“Sticks and stones may break my bones but words will never hurt me,” still rings true but telling a kid to “shake it off” when other kids say mean stuff seems to resonate more.

And yes, accidents happen, but if you can “shake it off”, child, then we can all learn and move on.

And so on.

I put Taylor’s words of wisdom to work recently with my daughter. We were selecting boxes of Valentine’s cards for her classmates. Now my kid’s a tomboy (and I love it) and in the past, she’s rushed to pick out Transformers or Star Wars-themed cards. But this year, she hesitated and instead, picked out a Hello Kitty box. Because, she claimed that her classmates don’t think it’s cool that she “likes boy stuff.”

Well, this made me mad. And so it begins, the peer pressure that makes kids feel they have to fit in rather than stand out. I get it, I really do. At their age, non-conformance is abhorrent. But I want my kids to be true to themselves and their passions. To stand up for their beliefs, have conviction. Even if that belief is that Transformers are cool. (They are.)

But how to instill in them that it’s OK to follow their hearts and be different? The kid and I had a serious chat. With tears welling in her eyes, she explained that she was embarrassed when the other girls told her it wasn’t cool to like boy’s stuff.

I looked her in the eye and asked, what would Taylor Swift do?

Shake it off, she responded, knowingly, her head held a little higher.

Thank you, Taylor.

 

For Your 10th Birthday, 10 Ways That You Amaze Me

Dear son, today you turn 10. And while every birthday is worth celebrating, this one is particularly poignant.

For ten whole years, I’ve held you, fed you, hugged you, entertained you, laughed with you, cleaned you and cleaned up after you, answered your questions, dried your tears, high fived your achievements. I’ve spent hours fretting, researching, discussing, wondering about how you’re progressing socially, cognitively, biologically, emotionally, academically.

I’m often telling you to quieten down, slow down, clean up, hurry up. I may nag, I may yell, I may sigh with frustration. I discipline and punish. I lay down tough rules. And yes, I make you empty the dishwasher, pick up your stinky socks, turn off your device, do your homework, eat your vegetables, flush the toilet, and play nicely with your sister.

Because this is all part of the contract I made with my heart when I became a parent. Its design, other than to protect my sanity, is to show you the path to becoming a good person. Because I consider that job number one.

But mostly, throughout this past decade, I’ve admired you. You, Gabriel, amaze and inspire me, and here’s why:

  1. You are high on life. You are always 100% in the moment (even if that moment only last 60 seconds before you are on to the next moment!) You grab each day with gusto and joy, extract from it as much delight as you possibly can. May your lust for life and joy always be with you and rub off on the people around you, so they can light up the room, like you do.
  2. You are creative. Your inquisitive and imaginative mind, sharp, curious eye and lithe fingers compel you to express yourself through detailed sketches, funny doodles, paintings, sculptures and, oh so many, fantastic origamis. There’s no doubt you have an innate talent. I hope you continue to explore and challenge your art because when everything is grey and dull, your creativity will bring color and energy.
  3. You are a book worm, a reading ninja. You surround yourself with all kinds of books from Captain Underpants to National Geographic. Almost every evening, as I tiptoe into your room to kiss you goodnight, I have to first peel from your cheeks the pages of the book you were reading as you fell asleep. Please don’t ever stop reading. It will feed your brain, your imagination and your sense of adventure.
  4. You are sensitive. Grandma always said you have an “old soul.” This past year you’ve dealt with some tough stuff – your beloved dog died and you were in a frightening car crash. You cried, you hurt. You were scared. But you worked through it all with more maturity that I ever imagined a nine year-old could. I’m sorry that sad and scary stuff happens. I wish I could protect you from it all but it’s part and parcel of life and I’m proud that you are sensitive and brave enough to show your emotions. Because it’s always OK to feel all your feelings. Except the cold. Please put on a coat when it’s cold.
  5. You love animals and nature. You cried when we had some trees removed because you were worried the birds would lose their homes. If there’s a moth or spider in the house, I want to crush them, but you insist on saving and releasing them outside. You want to pet every dog you meet. Maybe you were a golden retriever in another life. It would explain a lot!
  6. You make friends with ease. You are so personable and easy to know. With kids and adults alike, you interact with confidence. I hope to continue to pick – and be – the best friend. Because we need friends, in good times and bad.
  7. You are generous (you get this from your father.) Just last week, you spontaneously made an origami for the waitress at a restaurant. This past weekend you told me you’d saved enough money to buy your sister a Christmas gift. Generosity is so important; it keeps you ever mindful of the needs of others. But remember, generosity is not just about things: it’s about being generous with your time, your attention, your skills. And it demands no reciprocity. It just is.
  8. You are funny. I always say you’ll be the next Conan O’Brien. Your teachers think you are hoot. But please remember there’s a time and a place for your hi-jinx!
  9. You have an amazing metabolism. The sheer volume of food you can consume in a sitting is crazy yet your body remains lithe and lean. You enjoy being active and understand what comprises a balanced diet – even if you have the wickedest sweet tooth. Just keep everything in moderation and keep moving.
  10. You love your family. Grandma and grandpa, aunts and uncles and especially your cousins (especially Emma!) You are always so sad when it’s time to leave them. Remember family is everything: your roots, your anchor.

I can’t believe how time has flown and I’m so excited for the next ten years. OK that’s not entirely true. I’m terrified of the puberty years. Of hormones. Of teenage temptations. Of you learning to drive! But I’m also confident that you have the building blocks to show you the way.

Happy birthday Gabriel, I love you.

And don’t forget to wear a coat when it’s cold please.

And turn off your bedroom light.

And no, you can’t have a third slice of birthday cake.

Gabriel

 

 

 

How I Measure the Passing of Time

The sheer volume of Cheerios that can be consumed in one sitting

They still hold my hand

How quickly his buzz cut goes from sharp to disheveled

Her diminishing fear of auto-flushing toilets

They want their privacy

Volume of homework

Discussions waver at any given moment between poop, Pokemon and deep questions about religion, life and death and right and wrong. Also tooting.

Kids portions at restaurants are now too small (for him)

She still wants to snuggle with me at bedtime

Their beautifully expanding minds and vocabulary – including awareness of curse words

The escalating pencil marks and dates on the kitchen wall

Chapter books and intense reading sessions

The tooth fairy visits more often

Their bed times and mine are getting closer and closer

They need me less and yet they need me more

Taking Off The Training Wheels: A Mother’s Perspective

She’s a lot like me. A little cautious, a tad fearful. Prefers to set her own pace. Doesn’t take criticism awfully well. But determined, so determined.

Last year, she really tried it but took a spill. And that was it. Her confidence was grazed, never mind her knees. She decided she didn’t want any more of it. The wheels went back on. We didn’t push it.

A year later, things are different. After all, just look at the glee in her big brother’s eyes as he crazy speeds up and down the driveway, purposefully weaving this way and that, doing tricks? Taking spills but getting back on. She wants some of that action.

If I were the only parent, she may have never learned this. I’m the mother than cannot watch as they struggle to gain balance, take off and then wobble. With my breath catching in my throat, I put on an eager, supportive face but my insides are jelly, my nerves are screaming, waiting for the inevitable swerve and crash, tears and wails, grazes and bruises and hopefully, really hopefully, nothing worse. I’m terrified but I’m still cheering her on.

Fortunately, there’s him. Cool as a cucumber. Instructive. Determined and patient. Under his steady eye and hand, she really works at this, confidence building like a three-layer cake. And something clicks. She gets it. And she’s off, a little wobbly at first but she’s off. Self-propelled, balanced. Proud. The pedals turn, kinetically building energy, speed and conviction.

As she practices, her balance becomes stronger. The thrill of the ride shines in her eyes. “Wooohooo,” as she picks up speed. If she wasn’t wearing a helmet, the wind would be buffeting her hair, locks streaming out behind her like the dust Road Runner leaves in his wake.

I’m still terrified, of course. It’s the mother in me. But so proud of her hard work and grateful for his steady determination.

Of course, there will be spills, grazes and tears. But she will deal with them and get back on. She will learn when to switch into a higher gear, to look out for bumps in the road, to enjoy coasting, and when to apply the brakes.

And if that isn’t a metaphor for life, then I don’t know what is.

 

 

Three Lunch Box Strategies

My early memories of school lunches were very formative. From age 5 to about 12, it was all very Hogwarts-style. Long tables, steaming bowls of overcooked cabbage, ghastly steak and kidney pudding and sloppy semolina for dessert. Teachers staring down at you, ensuring you ate every last bite – or else. Being made to eat crisps (chips) with a fork because young ladies don’t eat with their fingers. Once we were into middle school, things became a little more modern. A cafeteria approach with less discipline and doom and more choice. I cannot remember if there was a salad bar or fresh fruit available – but I do remember the wonderful rhubarb crumble and custard. Most kids participated in the lunches provided by school, though a few (a lucky few?) brought in packed lunches, as we called them in the UK. (I don’t remember why my sister and I never had packed lunches: was it a parental mandate or our own choice? Note to self: ask Mum.)

Fast forward several decades and now I’m the Mom, pondering the school lunch landscape. Fortunately, thanks to Jamie Oliver’s Food Revolution and Michelle Obama’s program, school lunches here in the US are not as dire as they used to be and there is far more awareness of what constitutes a nutritious lunch, despite push back from school departments and economic challenges, especially here in Boston and Framingham.

My kids’ school district)has made good strides in providing healthier launch options and I commend them. Still, I’m not altogether sure that my kids would always make good choices or appreciate the food on offer (see below – roast turkey fricassee, anyone?) So every day they go to school with a home-packed lunchbox. Except Friday because pizza.

Have you ever done a quick search on Google or Pinterest for lunch box ideas? There are thousands, offering suggestions for alternatives to the tired PB & J, strategies for lunch planning and prep, and ways to create artistic masterpieces that will convince your kids to actually eat celery sticks.

Given that I’m not the artistic kind when it comes to food prep and taking into account the standard morning mayhem in our house, fancy sandwiches and sculpted vegetables were never going to be in our repertoire. In fact, in the spirit of divide and conquer, my role has always been on the grocery shopping/provisions side of the equation while my husband (a professionally trained chef) handled the actual prep. However, we kept on hitting three chief problems:

  • Not enough variety – we’d always default to the same foods
  • Both kids didn’t like the same things – son would eat the ham and cheese and leave the bread; daughter would eat the bread and leave the ham and cheese
  • So much wastage – their lunch boxes would always come home with loads of uneaten items.

So, in order to ensure their little tummies were full, their taste buds challenged and that we weren’t tipping all the leftovers into the trash every evening, we decided to try out three different approaches.

Variety is the Spice of Life

Theory: This phase involved cramming their bento-boxes with lots of different choices. Call it pick ‘n’ mix, the theory being that hopefully they’d eat a little bit of everything and get a well-rounded meal.

Conclusion: Failure. The kids ate what they liked, left what they didn’t and good food went to waste.

Shock and Awe

Theory: Surprise “baba ganoush and black beans” for lunch! We assumed that they’d be so hungry at lunchtime that they’d surely eat whatever unexpected delight they found in their lunch boxes.

Conclusion: Failure. It appears that kids would rather go hungry than eat suspicious food stuffs. Meaning crabby kids at the end of the day and yes, wastage.

Do-It-Yourself

Theory: A few months ago, I was struck by the realization that unless we stop doing stuff for our kids, they will never be able to do anything for themselves. So we decided they could make their own darn lunches every day (except Friday because pizza.) We provided some basic ground rules, like you must include protein and vegetables and the ratio of sweet stuff must not outweigh said protein and vegetables. My husband even taught them how to slice their own cucumbers which terrifies me despite the fact that my seven-year-old proclaims she is now “good with knives.” Oh joy.

Conclusion: Other than the daily concern of finger amputation, success! The kids are making good choices (see below), taking responsibility for feeding themselves, and best yet: they eat everything. Plus, my husband has an extra 10 mins in the morning.

My only regret is that we didn’t go the DIY route earlier. The next challenge is to get them to mix things up a little (my youngest picks the same foods almost every day) but all in all, DIY has been the way to go. Lunch box dilemmas solved!

School lunch mneu

School lunch menu

Kids lunchboxes with healthy food choices

Kids pack their own lunches for school

 

Separation Anxiety

Last week my kids offended me.

Not with any rude behavior or flatulence or other biological substances, but rather because they did not give one hoot that I was going away for a few days.

Yes yes I know. It’s a good thing. They are independent, confident, grounded, yadayadayada.

But please, surely one of them could have squeezed out a teeny tear? Or clung to me just for a moment? Maybe uttered the words, “don’t go?” I mean, no one even asked when I’d be back!

Have I done such a thorough job that they have no worries that their every need has been thought through, seen to, anticipated? I really should let something slip through the cracks next time.

Kids: here’s a tip from your loving mother. Please make her feel like you’ll miss her, even if it means faking it just a teeny weeny bit.

Seven!

IMG_8636

On this day, seven years ago, you arrived – two weeks early. You’ve not been early for anything ever since.

You are my funny girl, my ray of feisty sunshine, my karate ninja, my pop diva.

You know your own mind & I love that.

You can now read (oh the places you will go!)

You are blissfully unaware of your beauty. Your exquisite almond eyes and deep red lips.

You love love love your “rocky” music. And you move like Jagger.

You are my concert companion: first Bruno Mars, then Maroon 5. (Sshhh, there’s more in store this summer!)

Your appetite has grown as your beautiful body (that I made) has lengthened & strengthened. But you still consume food molecule by molecule. Meatballs, Mac & cheese, milk and chocolate rule your world. You are a broccoli machine. But NO SAUCE. Sauce is evil.

Your remain loyal to your main man Optimus Prime, but welcome his pals from Hero Factory, Lego Chima, and Ninjago. And Pokemon, of course.

You still want to be vet when you grow up. Or a pop star. Or a normal person.

You’ve mostly conquered your fear of new toilets.

You still burp like a beer-swilling trucker. (Grown men have been known to snort with laughter upon hearing such sounds emanate from one so small and cute.)

I’m training you to load the dishwasher to my exacting standards (this thrills me!)

You still maintain a freakish mental database of everyone’s ages and birthdays.

Most of all, you love to snuggle and give the tightest hugs!

Happy 7th birthday, my T!

 

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