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Seasonal Equality (it’s a thing) and Fall Comforts

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This post is sponsored by Born Shoes.

I find it a bit ironic that I live in a state with such subtle seasonal shifts given the fact that I live for the change of pace each new season brings. In fact, I still catch myself looking forward to things that aren’t offered here which is why I almost threw that adorable coal eye & corn pipe snowman kit in my cart the other day before I reminded myself, “Oh yeah…Florida.” Since our climate here refuses to throw the fall lovers a bone, I take the liberty of shifting my mental seasonal climate myself, and girl, I shift it hard. If you’re a longtime reader, you know that. Which is why I thank the heavens above for companies that practice seasonal equality, making sure things like pumpkins and corn husks and cable knit sweaters get in the hands of all who deserve them and not just those who are zoned for deciduous trees. So, when a box arrives from Born on my doorstep all the way down in Southern Florida on a sunny September morning and I open it to find new boots for Fall and a lace-up heel in a rich autumn brown that says “hold my cider,” I feel validated and goshdarnnit, straight up loved. “We see you,” Born is saying, “…trying to weave palm fronds into an autumn wreath, and we want you to know you get to be part of our fall club too.”

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Me? Really? Really?

I mean, they even put a peep toe on that delicious slice of fall footwear, a deliberate high five to the hot states and the perfect way to show off a Florida pedicure.

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Blane booties

Just because our pumpkins come from makeshift church parking lot “patches” doesn’t mean we don’t deserve chocolate suede and gold buckles. The right to butterscotch hues, classic black booties and, why yes, even knee-grazing equestrian boots if we wish belongs to all, which is why “ships to Florida” is part of the fall anthem I sing every season.

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This season, Born is celebrating fall by recognizing it as the season of great comforts as we all know, and they’re asking us autumn lovers to share what we’re taking comfort in. “Will you share how you take comfort this fall?” they asked me.

I thought you’d never ask, Born. Here, give me the mic (tap tap). Uh, lighting guy, could you give me some spotlight, please?

(waits for crowd to hush…clears throat…closes eyes…gets theatrical)

The Comforts of Fall.

I take comfort in our inward huddle this time of year, maybe because we’re so tired come October, but even so, I like it. I take comfort in the way we craft a little more, bake a little more, curl up on the couch a little more for watching movies or reading books to kids in jammies who are splayed over our laps like lazy cats. I take comfort in the nesting genes that arouse the last three months when I mother bird the living heck out of our place to make it as cozy as cozy can be–stringing twinkle lights, fluffing pillows, stirring chili, tucking bed sheets picked out special for this very time of year. I take comfort in planning all the festivities saved for the calendar’s grand finale–the costumes, the parties, the family dinners, the traditions that remind me what a gift this period of time in my family’s life is and to be grateful for all the hidden treasures. I take comfort in making lists that I’ll likely forget to ever look at again, but the making of the lists in itself feels satisfying. I take comfort in the sensory explosion–the scent of cinnamon and apple in the kitchen, the crackling of our first fire when that long awaited cold front finally makes its way, the box of leaves from Michigan that will arrive in a few weeks and make me cry with the good kind of homesickness. I take comfort in grounding routines and schedules that sometimes overwhelm me but remind me that the best things in life come with effort and discipline and, yes, sometimes tears. I take comfort in the adjustments that follow the tears–saying no when my cup’s too full, saying yes to self preservation. I take comfort in silly things that might not matter in the grand scheme of things but matter to me when I want to feel good–things like the perfect fall print in a skirt that swishes or chic boots that make me feel so put together, I even remember not to slouch.

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Casco Boot

I take comfort in friend dates and family movie nights and the joy of being able to call both my parents and hear them answer on the second ring.  I take comfort in putting check marks on our fall bucket list and feeling like completing “Host a Soup Spectacular” and “Watch Harry Potter with Homemade Butterbeer” is as important and productive as “Write Another Book” or “Respond to Every Unanswered E-mail.” And I take comfort in knowing that at the end of the day during this busy time of year, what didn’t get done is okay, and what did get done is good enough.

You know what I’m going to be for Halloween this year? I’m going to be Fall. As in Mother Fall, the season of all seasons.

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A big thank you to Born Shoes, a long time partner, for reminding us to think about those things we take comfort in, and giving us beautiful things to wear while we do. I have so many pairs of Born shoes and boots in my closet, and they are always the most comfortable things I wear. Sometimes, comfort comes at the cost of losing some cuteness, but Born is fiercely dedicated to making sure that doesn’t happen. We’re so happy they are also dedicated to supporting our mission to help people with Down syndrome achieve their dreams, so stay tuned for their return later this month in recognition and celebration of Down Syndrome Awareness.

Fellow fall lovers, what are you taking comfort in this month?

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3.21

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One year ago. Our Beach Celebration for World Down Syndrome Awareness Day.

I’ve recently remembered a night I had long forgotten and probably wouldn’t have ever thought about had it not been for the turn of events that occurred in our life upon Nella’s welcoming.

The memory is clear; the irony, haunting. I was five months pregnant with Nella, and a group of friends were joining at Brio for a dinner celebrating Heidi’s birthday. I remember everything about that night—the way the humidity made my hair stick to my cheeks as we stood waiting for a table at the bar outside, the mental note I made not to wear those jeans again as the waist pulled a bit too tightly and the button branded the skin on my ever-growing middle. I wore a hat that night. A brown tweed newsboy hat because it was September and my fall freak flag was craving brown and tweed and headwear.

I remember where I sat inside—at the far end of the long table in our private room, right between Heidi and Julie, my pregnant partner in crime. I took two sips of Heidi’s wine to feel part of the crowd and then smiled at my pleasure in knowing why I couldn’t have any more. I rested my hand over my stomach and swooned over the new ultrasound pictures Julie pulled from her purse. We passed them around the table and everyone pointed and laughed at the very obvious presence of one of her twin’s, ahem, man parts. “Whoa, lucky boy,” we laughed. We talked about pregnancy, cravings, newborns and both of us happily responded to the questions you have the privilege of answering during those blessed nine months you spend waiting in your life. Is the nursery ready? How are you feeling? Any names picked out yet? And it felt good answering them.

We talked about our babies’ health. How we were lucky. How ultrasounds showed high-kicking little people, lively beating hearts and perfect profiles of souls that had already seized our love. Our babies were fine, we said. And here’s where the memory gets a little haunting—in that beautifully prophetic way. I remember saying, “…and our last ultrasound ruled out Down syndrome.” Like it was one check off the relief list, even though it wasn’t even anything I ever worried about. No extra neck fold, heart in tip-top shape, femurs measuring just as they should.

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It was the only time I ever said those words during my pregnancy, but I remember it distinctly. I thought about it a moment after I said it, for the first time during either of my pregnancies actually, and the table briefly opened up to one of those “Oh God, can you imagine” discussions. I leaned over and interrupted a parallel conversation to get my friend Jen’s attention. Jen had a questionable ultrasound eleven years earlier when she was pregnant with her daughter. I remembered her story—how she had to wait for results for two weeks thinking it was a strong possibility the baby she was carrying had an extra chromosome. For the record, she would have kept that baby either way, but Oh God, can you imagine? I asked her to retell her story—as if it was some entertaining fisherman’s tale about the time he almost caught that really big fish. I listened and reacted and finally concluded our conversation with a “well, aren’t we lucky” mental note as I rubbed my belly and waited for my salad.

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Little did I know, I rubbed the belly of the high-kicking little person, the lively beating heart, the perfect profile of the soul that had already seized my love…the one with an extra chromosome. And, for the record, not that it matters, but yes—hell yes—we would have kept her had we known.

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Today is World Down Syndrome Awareness Day. And I want to talk about Down syndrome. Shocker, eh?

Why don’t I talk about Down syndrome more often? Because this blog is about our life, and our life is not about Down syndrome. I made the decision early on to keep this blog what it has always been, and figured Down syndrome would find a cozy spot on its own. It has…on this blog, in our home, in our hearts.

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Down syndrome is a sometimes-frightening but mostly beautiful part of my life just as being female is or being a photographer is or getting older, being a wife, raising kids is. Life isn’t always easy. Some things you choose, some things you don’t, but together it stirs together, and you drink it. And if it doesn’t taste quite right, you set to work in your kitchen adding, subtracting, perfecting that recipe until it’s the best damn drink you’ve ever tasted. The perfect cocktail. And Dude, I know how to make a good martini.

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So, where are we now?

We are parents of two witty, kind, and smart teenage boys and two funny, beautiful, charming girls. That’s where we are. Mostly, I don’t see chromosomes, I see kids. And that’s what I want the world to see too.

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Sometimes—not often—but sometimes I am scared. Sometimes I hold her and stare into her eyes and swear on my life she knows exactly what I’m thinking. Sometimes I tell her I’m sorry she has to struggle more and I feel bad when I see her work so hard to shimmy across the entire hallway to get to her brother’s bedroom. Sometimes I lose my breath worrying we might be one of those “increased likelihood” cases and sometimes I think about life expectancy. But these “sometimes” are few and far between.

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Mostly, I am amazed at my girl’s spirit and astounded by her determination. I am caught up in the thrill of motherhood and the joy of raising two girls who are a bit different but mostly just the same.

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I am aware of the facts. I can read the books more comfortably now. I am aware of the future and yet I dwell in the beauty of today and the amazing potential of tomorrow.

So on this, World Down Syndrome Awareness Day, what do I want you to know?

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Well, there’s the basic stuff I didn’t know a year ago. Things like it’s Down syndrome, not Down’s syndrome and we say “a child who has Down syndrome” as opposed to “a Down syndrome child.” I could tell you about hypotonia and my girl’s ability to stretch her legs like Nadia Comaneci or the little gap between her toes that’s just begging to be filled by a pair of Isle of Capri flip-flops.

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I could inform you of all the terminology—words like single palmar crease or Beckman oral motor intervention. But it’s taken me a year to learn these things, and it hasn’t made me any more aware of what’s most important like falling in love with my daughter has.

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Mostly, the parent of a child with Down syndrome—or autism or Turner’s syndrome or Prader Willi syndrome or, for that matter, no syndrome at all—wants the world to accept their child. To love them, praise them, high five them on the soccer field, compliment their awesome sneakers, invite them to birthday parties, ask them questions and really listen when they reply, pick them for playdates, help them when they’re struggling, teach them when they need it and recognize all the good they have to give the world.

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Having a child with Down syndrome, I am consequently more sensitive to degrading words people use—words like retarded. I’ve used it in the past—not purposefully meant to degrade, of course—but in passing when I’ve done something without thinking. It’s amazing how many times I’ve heard this word since Nella was born—usually thrown out in the same way, not meant to demean anyone, and it’s taken me awhile to figure out how I feel about it. Obviously, yes, it’s a word that is used frequently to degrade people with disabilities and for this reason, it shouldn’t be a part of someone’s vocabulary as a silly way to refer to yourself when you’ve mindlessly attempted something. There are campaigns within the special needs community to end this word, and I join them because I support this cause not only for my children, but for others’ as well. But the word exists, not only as a demeaning term, but as a medical expression too—a matter of fact, printed with other words I can’t pronounce under lists of indications that my child has an extra chromosome. And I want to be informed of what it really means—before society notoriously went and made a mess of it.

With that said, the word “retarded” comes from a Latin word that means “to make slow.” In music, a variation of the word refers to a beautiful “slowing down” of pace at the end of a composition. And, if you remember the story of the tortoise and the hare, you’ll recall who won in the end. I’m just sayin.’

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My point is, throwing out “the R-word” is usually done in ignorance, and the fact that the word used inappropriately is meant to refer to a lack of intelligence is well, ironic. So, I guess this is all suffice to say, out of kindness and respect for everyone and the way this word is degradingly used, please amend the existence of this word in your vocabulary and teach your children to do the same.

Mary Oliver says, “Pay attention. Be astonished. Tell about it.” And I think that’s what awareness is all about.

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Houston, we have pigtails.

Pay attention to the person, the child, the soul—not the wheelchair, the chromosome, the difference. Allow yourself to be astonished—to learn something new from someone, to be inspired, to laugh, to enjoy a moment. And then pass it on. Spread your awareness message by the way you live, the way you speak and the way you treat people.

My girls are very different. One has eyes like little brown moons, a delicate nose, and fine blonde hair that looks like spun sugar when it catches the morning light. She is wispy and shy, lively and agile. The other one has almond eyes with deep blue oceans, one with golden flecks. Her nose is soft and sweet—like cookie dough—and her sandy blonde hair sweeps nicely across the milky plane of forehead that begs to be kissed. She is comical and loving, eager and determined. One has 46 chromosomes, one has 47, but you hardly notice when you’re watching them both scrape sidewalk chalk across the pavement or patting the backs of their baby dolls. They both are lovely, and we are lucky.

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On 1-22, we were blessed with 3-21. Three copies of the twenty-first chromosome that have opened our eyes not only to new awareness about Down syndrome, but about Life. What we are capable of…to be more. And, as Mary Oliver said, to “pay attention, be astonished and tell about it.”

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Don’t take her paper towel away…or else…

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I know what it feels like to be the mama of a special needs child, and it is in that role that I have felt fueled to advocate more fiercely for the rights of individuals with Down syndrome. Sometimes it takes wearing the shoes or wondering what it would be like to wear the shoes of a tsunami victim, a mother with cancer, a soldier’s wife, or the parent of a child with a special need to force us to be more compassionate. A child must understand the concept of “self” before he learns to share; so it is a person must wonder what it would feel like to personally experience something to be truly altruistic. I hope that reading this blog has perhaps allowed you to feel the challenges and joys of raising a child with Down syndrome. And, in doing so, I hope you are more aware of every individual’s capabilities and maybe, your own as well. Thank you again for reading, for sharing, for being part of our journey.

For more information on the amazing things individuals with Down syndrome are accomplishing and the way these beautiful souls have changed those who know them for good, please check out the NDSS’ My Great Story campaign or watch Nella’s ONEder Fund video.

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After climbing into the bathtub this weekend all by herself, Nella had her one-year therapy evaluation today, and I am beaming. Typical milestones she’s hitting. Knocking the ball out of the park. I think she has an inner Betty too.

And the Linkel Designs gift certificate goes to Comment # 577, heather: loved this post , and i mention you to all my friends or even the bagger at the grocery store !!! if i could name my inner badass….i will have to get back to you on that …after i find her this week ! 5 things im tired of …… colds, squirrels digging in the trash, bad batteries , gas prices, daddy on night shifts. 5 things ill never be tired of ……..putting fake nails on my 5 yr old, telling noah hes mommys baby, morning breath , caramel frappes ,cards in the mail…
cant wait to see laineys party. love you all. love and blessings, the doughtys

Heather, please e-mail your info to kellehamptonblog@comcast.net. Congratulations!

And I can’t help but comment on all the names I loved from your inner baddasses. Like Natasha and Shantel and Ruby and Lola and Elektra and Shirley and Towanda.

Sarah Sitting Down

I was so touched by a reader’s e-mail last week, I’ve asked her if I can share it. This young woman is such a brilliant example of confidence and tenacity, and she’s brought such beautiful clarity to some of my own challenges. I hope she inspires you too.

Dear Kelle,

My name is Sarah and I am one of your mystery readers. I feel like I am in AA and making a confession. I stumbled on your blog after receiving a link to another blog from a friend. Your blog was listed on the side under “blogs I read”. I was quickly drawn to the title and started reading. Little did I know, I would be reading your blog over the next several weeks, searching for every undiscovered, unread post. I immersed myself in your life, holding on to every word and every picture. I would sit for hours just reading and sobbing. Sobbing sometimes because of the sadness, but mostly because of the joy you exude in the most difficult situations. You take darkness and turn it into light.

Twelve years ago, when I was just twenty one years old, I was involved in a horseback riding accident that left me paralyzed from the waist down. Immediately, my life changed and everyone around me changed. Nothing was the same anymore and I was faced with not only the cluelessness of my twenties, but the overwhelmingly difficult challenge of doing this while newly paralyzed. After waking up in the ICU and learning my fate, I decided I would jump in with fervor and gusto. I was going to be the toughest, strongest, coolest paraplegic there ever was. I powered through therapy and insisted on covering my enormous back brace with chic pieces like a sweater around the neck or a scarf. I returned to college, after only missing a semester to recover. I was living as if I was going to beat the prognosis. As time went on, I learned this idea was not going to work. I began to have a tremendous amount of difficulty with the insurance company and obtaining what I needed, wheeling across a college campus seemed like so much work and took so much time. I started getting sick more and more often and was spending more and more time alone in my dorm room. I didn’t want to go places because I didn’t want people to see my wheelchair. I would have people over and insist I had to stay in bed just so I didn’t have to sit in the chair. I was losing and changing friends so rapidly because I had no idea who I was and anger and resentment were taking permanent residence in my mind.

I left Miami University, started a new job, and moved in with a high school friend. I continued to have higher and higher fevers every single day. I was vomiting every day, sometimes three or four times a day. I was trying to do my job as a tutor for children with autism and give them my presence and devotion and the attention they deserved, but I was slowly slipping away. My health problems increased and so did my insurance problems. My wheelchair was repossessed because of my insurance company’s failure to make payment! The issues went on and on and I fell deeper and darker into depression.

The doctors finally discovered that I was carrying a blood infection for at least nine years. I had to fight a number of doctors until I found one that actually felt there was something huge going on and didn’t dismiss my symptoms as just a UTI or a stomach bug. I had three years of treatments, of various kinds, to heal this infection.

I am now recovering rapidly and look forward to a future. Last year, when I discovered your blog, I was having a particularly difficult time in my life. I was terrified about moving forward, wasn’t all the way healed, and was just generally frightened about life. When I started reading your words, reading the fear you have, seeing how you keep going despite wanting to shut down, and feeling the positive energy that exudes from your blog, I started believing that I may have the life I’ve always wanted after all. Your honesty about wanting to hide the disability spoke volumes to me. I was always trying to live in spite of my injury instead of embracing it and living with it. I wanted to hide from everyone. I check your blog constantly because a simple picture of your girls or a story of a moment you’ve had, good or bad, can make my day seem bearable or better. Your stories, love of life, parties, simplicity, courage to just be present are all addicting. I want to create the feeling that comes through your blog in my life.

I, like you, always had a baby on my hip or kids in my life. I was the super nanny of my neighborhood and babysat all through high school and college until my accident. I can not wait to have a husband and babies. I can taste it, it is so real for me. I began thinking my dream life wasn’t possible because I couldn’t picture myself caring for my children they way I babysat. Water parks, ocean visits, hikes, and even playgrounds seemed impossible. I thought my children would be the unluckiest children and wish their mom could do something besides play scrabble. But then I found your blog. I see that Nella’s life is Nella’s life. Whatever modifications or changes have to be made, in comparison to Laney’s life, are made seamlessly. No one is suffering from a lack of anything. A disability does not mean dreams are over or are even comprimised. Working hard and making life what we want it to be is what we all have to do. Nella and I may have to work a bit harder, but we will still can have the life we desire.

Thank you for inspiring me to live the life I want and for making it look possible. I am plowing full steam ahead to grab what I want and to quote someone I admire, “suck the marrow out of life.”

Some people like to tell me that my injury, my paralysis, my illness, they are all a part of a plan, particularly God’s plan. That everything in my life has a reason and only He knows why. Well, I tend to find that a ridiculous thing to say. I find it very difficult to believe that hurt, pain, rape, murder, disability, war, and many other awful things are all a part of a plan. As far as I know and understand, God is love. Whenever love is present, so is God. God is inside of us all. When our hearts expand and more love blossoms, we are finding and experiencing God. When something tragic happens instead of being a part of a master plan, I believe it is just one more way we can expand our hearts. We are all a part of the human experience and with this experience comes many, many things we can not control…some good and some bad. Instead of analyzing them and figuring out why they occur, we would be much better off expanding our hearts and realizing all of the other people who share similar circumstances. We would be better off being a little bit easier on people we are frustrated with because who knows what he or she is going through or has been through. We must become more gentle and less tough. You have mastered this idea of opening your heart and sharing love.

Every child has known God-Not the God of names-Not the God of don’ts-Not the God who never does anything weird-But the God who knows only four words and keeps repeating them, saying: “Come Dance with Me.” Hafiz

Our life is a dance and we are the choreographers. You have taught me this through your blog and book and I am forever grateful. Because of you, I am starting my own blog to try to reach out to people who are suffering and in a similar condition or situation to mine. I hope it helps everyone, but want to focus on the disabled. A friend’s son jumped into a pool and is now paralyzed. He is at the beginning of the journey and I want to help him with my honesty, just as you have helped me with yours. If I reach out to only one person, it is worth it. I also need a place to tell these ridicouls stories that have happened throughout this journey! Please know I think of you often and am touched by your words constantly.

Thank you,
Sarah Berger

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You can read more from Sarah’s new blog, Sarah Sitting Down.

Sarah, thank you so much for sharing your story.

I’ll be back tomorrow with a regular post and the Mark Poulin giveaway winner.