Monday, March 21, 2011

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.

523 comments:

1 – 200 of 523   Newer›   Newest»
ZDub said...

Thank you for this.

XO.

Jeanette said...

thanks for sharing! Special needs kids do change our lives but their diagnosis doesn't define our lives. Of course, you worded it way better than I could have. :)

Sarah said...

Kelle-You should be so proud (and I know you are) of your beautiful little girl. Nella is quite the wonder and that extra chromosome just makes it sweeter! Another beautiful post about your beautiful little family!

Nikki James said...

This post is profoundly beautiful.

mcekuta said...

This is your day little Nella. You deserve this as well as all the other extra chromosome loves. Each day you amaze your family as well as all of your blog follower friends. You go girl!!!!!!!

3-21-FOREVER! XOXOXO

Amanda Moury said...

You are an amazing mom and such an inspiration. Thank you so much for sharing your stories with the world, your family is absolutely beautiful and it's so much fun to watch your girls grow! Love Nella's 'boo-hoo' face! :)

The Mac's House said...

I love the shadows on the walls, pigtails, Mary Oliver quote, and love that is boundless.

:)
Teri

mrsmacolsson said...

Beautifully written post. You have the most exquisite girls! Loving the "oh" and the shadow making.

Emma said...

Great post! Inspiring, honest and beautiful as usual!!!

FEAS613 said...

Mary Oliver would be proud - paying attention to all the small things - allowing each moment rock you to your core and telling about all of it to your thousands of followers!! Nella and Lainey are lucky to have such a wonderful mother who is determined to raise awarness - to make the world a better place for her!

And oh - the paper towel pictures -didn't take much! And yay for pigtails :)

Happy Monday!
~Beth

claire said...

Kelle, thank you. This post might be for Down Syndrome Awareness Day, but I think anyone who has ever loved a child with special needs can relate to what you say.

Ashley said...

Another beautiful post :)

I've been working to banish the use of the R word for many years now...and will keep on keeping on!

Siany said...

Im going to tweet this. So touching and so real as always. Same but different. Different but the same. A beautiful message xxx

rebecca said...

,,,sweet photos of nella crying,,,as much as my heart breaks that she had something taken away from her thus the tears, i think these photos are my favorite,,,

Summit of Glory said...

Changing the world Kelle! Happy Ds Day. Thanks!

Sheri @ Design Pop Interiors said...

She's absolutely beautiful. Always remember - God chose you to be her mom. She's blessed and so are you.

Rena said...

Beatiful post... I'm reading this at 3:30am in the morning whilst I nurse my little girl and it has truly touched me and made me thankful that there is a mumma like you in this world, you truly are an amazing woman and mother :D

Douglas said...

I couldn't agree more. All my students...especially the ones with extra chromosomes and labels that come from the latin word to make slow...they thank you. Thanks for doing your part to make the world a better place. Blessings..Marissa

redheadreverie said...

Beautifully stated (as always) Also, wanted to tell you that while we were playing at the mall playground this weekend my son made his mama proud when grabbed the hand of a little girl with Down Syndrome (whom he didn't even know) and asked her to "come play with me". All he saw were the cute pigtails and blue eyes, and a potential playmate. They played until we had to leave, and it warmed my heart.

Thought of you and your little Nella the entire time. Smiles...

Jaclyn said...

Beautiful, loving, soul-touching post Kelle. Thinking of you and yours today. Loving Nella's new hair accessories! :)

Tra le foglie del mio giardino said...

"Allow yourself to be astonished-to learn something new from someone, to be inspired, to laugh, to enjoy a moment ."... Thank you, my days have changed thanks to Nella! Her smile has opened my eyes to the true meaning of life. Thanks, really.

Michelle said...

Once again I go from tears to full on laughter. Tears because you and your writing are amazing! The laughter came at the expense of Nella's tears. That pouty face is priceless. Thanks for bringing awareness to a wonderful day!

Hutch & Meg said...

I love reading your blog, and have been thinking about telling you about this for a while. It is an incredible place that has performed REAL miracles for our friend's son. They specialize in Down Syndrome children. If you ever have a chance, check it out...http://www.iahp.org/

Renee said...

Thank you so much for always bringing joy to my heart every day. I love reading your blog and look forward to your posts. I live in Florida as well and love the pictures, you make Florida always look sunny on those 3 p.m. rainy days. LOL

Something Old, Something New said...

This is such a great story and the pictures to go along are great. You are truly inspiring! You have a beautiful family and Nella seems so amazing!

Mrs. Buckingham said...

Beautiful. Beautiful post Kelle and well said too. You have done an amazing job at raising awareness and created a special soft spot in so many people's hearts for anyone with the little extra something special. I agree... out with that "word." LOVE the piggy tails... her hair color resembles Lainey's so much that I thought it was Lainey at first glance (the pigtail picture with Nella's back to the camera)! As always... LOVE your posts. You really are my favorite author, and every time you publish a new post, I feel like I just got something hot off the press handed to me! <3 Amber

Louise said...

Beautiful girls! What a wonderful post, I love how you don't let Down Syndrome define Nella or your family. The 'r' word is something I have NEVER said in my life, I am British and you wouldn't find a British adult say the British version of this world. I found it very shocking that people, especially adults, threw this word out like it was acceptable upon moving to America. I agree it needs to stop. Would you believe our children's Pediatrician said this word once to us once?! (Me: Oh look, he stood on the scale by himself! Ped: Well he is not r.....). I could not believe it and I see I different Dr now. Thank you for educating people Kelle :)

Jen said...

Lovely. Thank you.

Libby said...

Thank-you. If you don't mind, I'm going to ramble a moment.
One of my classmates has spina bifida. She's one of the smartest girls in the class, hopes to study vetinary science at Cambridge, and we all know she'll get there. But she misses a lesson a week to go to a physio session at the base at our school for the students with physical disabilites.
This base is where I meet her to walk home on a Tuesday. And those moments, waiting for her to come and meet me, scared me. The place was full of kids, smiling and laughing and hugging friends goodbye, who just so happened to be disabled. Some had mental disablities, others would be in a wheelchair for life. In situations with the 'normal' kids, where words like retarded are thrown around like they mean nothing, these special needs students were awkward, shy, fragile. But when they were altogether, this melting pot of people who didn't fit the mould, who were 'retards'? They were kind and gentle and happy. Some of the people swore and kicked as an outlet. But here, there was an awareness that there are people like you, people who are fragile, people who aren't 'normal'. And with that knowledge they were calmer and happier than in lessons.
After reading Enjoying The Small Things, it just reinforced what I had slowly been realising. Disability does not define a person. And with this knowledge, I am happier. I talk, I laugh, I help, whilst I am waiting for my friend.
For this, all I can say is thankyou. Thank you, thank you, thank you.

thetaooftulips said...

Beautifully said. God bless that Mary Oliver.

Cole

Vonda said...

Loved this post and thank you so much for another Nella "O", makes my day every time. Had to laugh at Nella's sad cry face when you took the paper towel. It is amazing to me that our children with Ds can close their eyes THAT tight when they cry. I swear when Noah cries you couldn't open his eyes with a crow bar!!!! He certainly isn't lacking muscle tone in his eyelids!!! ha ha ha

Sarah said...

This...."And, if you remember the story of the tortoise and the hare, you’ll recall who won in the end. I’m just sayin." .. this has changed my perspective about the things I am struggling with today .. thank you!

Also, I read an interview the other day where the woman said "your heart can't break as hard if you're laughing out loud" and hoooy boy, that also hit home. Reading your post today .. I think you personify that statement! Beautiful all around.

Alie said...

Mary Oliver (in her collection Swan) says, "If you suddenly and unexpectedly find joy, don't hesitate. Give in to it."

Thanks for the example of taking life, and going. Your joy and encouragement is infectious. And your daughters really are lovely.

michellegtu said...

Beautiful post. I did have odds of 1 in 24 for Down syndrome with my last pregnancy and I think it made me a better person. I learned alot while I waited for my daughter to be born. She was born on March 3 2010 and did not have a extra chromosome but I knew that no matter what she was going to be a blessing! Oh by the way my daughter eats tissue too...what is with that! ;)

Katie said...

This post was stunning from beginning to end. The words were beautiful and the pictures were gorgeous. You are one lucky lady to have such an amazing family. Today is Down Syndrome Awareness Day and I promise to rally with you and spread the word. Thanks again for letting all of us sneak a peak into your life :)

Lisa said...

Love, love, love!

{andthisiswhatshesaid} said...

Your post brings tears to my eyes... I myself, have used the "R" word, out of pure innocence, not referring to the actual definition, and it pains me to think about it, from what you have said. I understand how much this means to someone who actually has some sort of mental handicap.

Your daughters are beautiful. Nella is amazing. I look at your pictures and I feel her smile. I haven't seen a baby so happy, so smiley. I love her and I don't even know them. The picture of her crying is the first I've seen without a smile.

Your lucky, your daughters are beautiful. Nella will show the world that her 47 chromosomes means nothing more than being a tad bit more wonderful.

Thank you for this post. xoxo.

caygraymomma said...

Hey Kelle, thanks. I could have written this, except replace Down Syndrome with autism. We checked all the little boxes, reaching for the clues that would tell us, "Yep you're little one is 'normal'" What a silly word that normal. We congratulated ourselves on how lucky we were. However, over time we learned he is autistic, but amazing and we are so so so so so lucky to have our magicman, and I know that you know you are so so so so so lucky too.

Thank you again for your beautiful words. I often feel like if it wasn't for the span of a country, we could totally do coffee.
Lisa

Laura said...

Amen Sistah! Beautiful Kelle - your words and the photos!
Happy World Down Syndrome Day! :)

Laura & Ryan
http://nowimamom.blogspot.com/

Sher said...

There's my cheesecake girl...all full of goodness and sweetness and soft all rolled up with a fruity topping!

I see Heaven in her eyes. She knows a lot that little one of yours. She has a lot to share.

Now, give her some paper towel mama!

IRWSMom said...

You are an inspiration. Truly. Thanks for your words today that hopefully help me to be a better person.
~Monica

kelly ens said...

Kelle, I don't think I've ever posted a comment on your blog, but I have been following you since Nella was born. I find people with Downs Syndrome to be the warmest, kindest, most genuine people I have ever met. I went to high school with two girls that had Downs Syndrome and they were a light in the hallways. Your girls are both so beautiful and adorable and Nella just makes me smile - and the 'oh' face? ADORABLE!!!!! :) Many blessings as you continue to raise your kids :)

De in D.C. said...

I'd always wondered if you'd had a nuchal translucency test performed. You hadn't mentioned a negative result after Nella was born, so I wondered if you had opted not to get the test.

My son is two weeks older than Nella, and I didn't get the test. I didn't want to me that paranoid pregnant woman that was worried about everything. I knew my baby would be fine. And frankly, if the test had shown something, while it wouldn't have changed anything for me, I didn't want to be put in the position where I felt like I had to make some kind of decision. Down syndrome, or anything other syndrome, was a non-issue for me. My son ended up having some health scares at the end of my pregnancy resulting in an emergency c-section 2 weeks early (due date was 1/21), but I don't regret not buying into the pregnancy hysteria. Because, in the end, he's still perfect.

Amy said...

Beautifully said...thanks for a little ray of sunshine this morning. ~amy

Kmarie said...

Here kelli:
You give a way so much here is an opportunity for you to win a 100 gift card to Itunes or some cute bags by donating to a cause you love:
http://kristadawne.blogspot.com/2011/03/giveaway-for-world-down-syndrome-day.html

Bennet has a forever home waiting but they cannot afford to bring this Downs syndrome guy home. Reece's Rainbow helps but he is 5 and time is running out. It is almost time to for the ukraine orphanage to send him to an institution where he is chained to a bed. Donate 5 dollars and you get to enter the give-away ( See upper link) I knew you would love this opportunity on my sister's blog:)
Any other commentators are welcome to make a difference and go for the 5 prizes offered.

Heather said...

PIGTAILS! LOVE LOVE LOVE, I remember when I could first get them on my girls. Now the stinkers think they are to old for them.

You have changed what Down Syndrome for me. I use to feel uneasy. That feeling is gone because I stopped worring about the differnces. Now each week when we do the shopping the young man who collects the carts enjoys telling me about his day, he brings my little guy out a balloon and we have a great few minutes together. I look forward to it each week.

Thank you again for sharing your life with us. I can't really put into words without sounding like a total freak how much it has ment to me.

Give that girl back her paper towel right now!

T.J. & Becca Wuth said...

Posted this link on my FB page in Honor of Word Down Syndrome Awareness Day. I fall in love all over again with baby Nella each time I read your blog!! She makes me smile from my soul!

Southern Gal said...

As always you've turned out a beautiful post. I love how you describe your girls. They are both lovely beings. Thanks for sharing them with us.

It's hard watching children struggle, but it's harder still watching them be ridiculed by other children. Let's teach out children how to love others, no matter how they are categorized. The world would be so much better for it. Thank you for raising awareness and making it known.

{andthisiswhatshesaid} said...

I'm sure you read this somewhere, but I wanted to share:

A Creed For Babies With Down Syndrome:

My face may be different

But my feelings the same

I laugh and I cry

And I take pride in my gains

I was sent here among you

To teach you to love

As God in heaven

Looks down from above

To him I’m no different’

His love knows no bounds

It’s those here among you

In cities and towns

That judge me by standards

That man has imparted

But this family I’ve chosen

Will help me get started

For I’m one of the children

So special and few

That came here to learn

The same lessons as you

That love is acceptance

It must come from the heart

We all have the same purpose

Though not the same start

The Lord gave me life

To live and embrace

And I’ll do as you do

But at my own pace

Farmgirl Paints said...

i love how you educate. you do it in such a sweet and nuturing way by sharing yourself and your story. very sweet post and that nella i swear i love her. i just do. the one of her leg thrown up in the air laying on that bea-ti-ful quilt and then the ones of her teary up...just precious. God gave you both a gift the day she was born.

Sandy said...

Thank you. And just as my mom raised us to look past--but not ignore--what makes people different to see how we're all made special by God, I hope to raise my kids so that they'd be those kids who would give Nella a high-five, a hug, a paper towel....

Thanks for advocating for all special children, and for using your gift of photography to show us the beauty of all children, extra chromosome or not.

meganfitzgeraldphotography said...

kelle, thank you for this beautiful post. you express what i only wish i could. i hope my girls will know how much i love them as much as your girls will know how much you love them.

Andreas said...

What an great post!
I am working solo at my bakery today ( my baby twin boys are at home with Grampie)..your beautiful words have me serving customers with tears in my eyes and an extra big smile on my face!
Beautiful, special girls!

pakosta said...

your girls are both so beautiful and amazing! I just adore seeing pictures of them both!
and GO NELLA w/ those milestones! I think she's doing awesome!
tara
p.s. where are her cute little glasses?!

Tonja Keene said...

Your blog has made me aware. When I see people with Down syndrome I melt. I love them. I think of Nella and your family. In the past I wouldn't have even given them a second look/thought. thank you!

Life is Like a Box of Chocolates said...

And then there are people like my sister who went through all kinds of tests because the doctors thought her first born did have Down Syndrome. It turned out he was just developing different from other babies and did not have Down Syndrome, but it caused a huge amount of angst and stress in her pregnancy.

Michelle said...

Happy Down Syndrome Awareness Day! Nella is beautiful, as is Lainey. I love the pictures of both of them and yay pigtails!! :)

Elisabeth said...

Excellent post! Thanks so much for sharing your heart. It is always a joy to read your blog.

The Postman said...

I love your blog and recommend it daily - and today's post inspired my first comment. You are truly an inspiration. Before choosing to stay at home with my babies I was a Special Education Teacher and I have told my former colleagues about your blog in hopes that they would share it with the parents and help other parents get to the place where you are - a wonderful, happy place!

lisa said...

So beautiful, Kelle. Thank you.

Team Lando said...

Ellie wishes Nella a happy 3.21!

Erin said...

Thank you for always sharing from your heart...you have such a beautiful way with words. Thank you for sharing your girls with us.

Love, Chelsea said...

The paper towel face breaks my heart! Beautiful post.

My Secret Rooms said...

Beautifully written. I change, hanging here!

Tina said...

I never knew what I know now about DS until I came across your blog. And now, when I see anybody with DS, I smile like I'm in on some big secret because I know, and I understand. To me, an extra chromosome is simply magical.

Happy World Down Syndrome Awareness Day!

feijaozinha said...

As always, you post and pictures were amazing. I love Nella's pigtails. My one yr old daughter is also obsessed with paper towels.
Congratulations on your lovely family!

enmouton said...

what a beautiful post... this may seem strange... but here goes... back in june 2007 i was 15 weeks pregnant and already mother to a soon to be 1 yr. old baby girl... two days after my daughter's birthday we found out that our other baby's heart had stopped... later we found out that it was because of a rare condition... in the mean time people i barely knew... felt the need to tell me that "everything happens for a reason... that baby obviously had issues... it's god's plan... you're lucky 'it' wasn't born... just think if it would have been born with down syndrome.."... on and on... and i wanted to scream... scream at them and tell them... sure... the baby may have had difficulties... even down syndrome... but i would have loved that baby no less... and i wanted that baby no less... and you know what?... ever since i started reading your blog it only strengthens my conviction that, yes... that baby would not have been a burden... that baby would have been perfect for us... needless to say... thank you...

e

Marley's Momma said...

Love, love, love your blog......found it through a friend only a few months ago, but I've read it all! Your girls are beautiful and reading your entries makes me smile and cry happy tears.......happy to be a momma to my little Marley baby, happy to be alive, happy to have so much love in my life. You are inspiring, Kelle!

Hannah @ Peggy Ann Design said...

I've been following your blog for awhile now and i don't know that i've ever commented, but i wanted you to know that I LOVE this post (and all the other ones). Your blog is always so inspiring and uplifting. Educating other people is the best way to cut out ignorance ;-)

Beth McC. said...

SO SO SO Precious! I love your pictures and I hate to say it the ones where she is crying made me tear up! What a sweet baby girl you have! I also love Lainey in the background of the Leaf pictures her face is priceless!

Michiels Moments said...

I see a stunning little girl, who is very loved!

Court said...

What a beautiful post. And those pigtails absolutely slay me!

Jorie said...

Just when I thought I couldn't be more moved or inspired by your blog...you go and do it anyway! Thank you Kelle! And Happy 3-21!

happygirl said...

I always say a prayer when I read your blog. I'm a mother of an adult child with Asperger's syndrome. We hope he will be able to live on his own, one day. We haven't come to that day, yet. I understand slow. I sometimes wish for the obvious symptom feature, but Asperger's doesn't show that way. Just the social differences and other disorder manifestations. You have a beautiful family.

Krissy said...

I've bee readign your blog since Nella was born. I rarely comment but check daily for new posts. You and yours sweet little girls have touched many many lives. You are doing a wonderful job. keep the posts coming!

Chelsea Earnhardt Plax said...

thank you thank you for this. very well written and expressed. beautiful as always!

Andrea W. said...

What a post! Beautiful! Thank you for opening my eyes a little wider to the world around us all! Love the pigtails...too stinking cute! And the papertowel pictures are priceless!! You are an amazing woman!

jacin {lovely little details} said...

this one gave me goosebumps. thank you for posting.

Stephanie said...

Perfect!

I am a special education teacher/professor and my primary focus is transition...from school to adult life!! I teach high school students with disabilities (all) about leadership and self-determination! They amaze me now and I can only imagine if I had been with them since the beginning!!

Kudos to Nella...her independence, her determination, and her momma's willingness to let her be herself are some of the best preparations for the future!!

You get it!! Awesome!

Chicago Mom (Heather) said...

My son has autism. I love your blog and I've been reading it faithfully for over a year now. Thank you for this post!

Jenny said...

Cheryl Bailey referred me, and I know why! Beautiful, just beautiful. Thanks for sharing. I'm going to share this on my Facebook page. Should you ever want to be featured as a Wednesday's Woman on my blog, just ask!

Jenny in Mi
www.manyhatsmommy.blogspot.com

Rachie said...

beautiful post as always...found your blog through a friend on facebook...i check for new posts daily. you inspire me to be a better mother and person every day!

Andrea said...

this was such a beautiful post and such a good reminder to all of us about the amazing gift life is no matter who you are or what you're dealing with.
xoxo
andrea

MeganMR said...

I love reading your blog. Sometimes I want to tell the world about you and other times I want to have your blog all to myself. LOL
So glad I found you. You inspire me every time you write.

Beans said...

Congrats Nella on a great evaluation! We all know how freaking amazing she is!
I just don't know how it's possible for me to fall more in love with your blog every stinking time you post!??
Piggy Tails--OMG love.
And Nella's sad face regarding paper towel: OMG broke my heart. Sitting here and I let out a big, "Awwwwww......."
I am just in awe how you capture these moments on your camera. Truly inspirational.
Thank you for a great post!!

A Cappelli said...

Lovely post. Thank you for sharing your life, your story, Nella's story with us. For making us aware, and nurturing our understanding, compassion, acceptance through your guiding words. My children often read your blog over my shoulder. Nella has become a household name (as I am sure she is for many of your readers). My boys (Max 14, Henry, 12) always comment on how much Nella's expressions remind them of their 13 month old sister -who does not have Down Syndrome. I only mention that because despite whatever difficulties or set backs Nella might encounter, she is the face of every child. Her smile exudes this sense of boundless joy. She has touched our lives, for sure.

Natalie said...

Thank you for speaking on behalf of all special needs families! You are such an inspiration to so many!

Victoria said...

well said!

and could nella be any cuter?!! her outfits are fantastic, by the way :)

i,too, hate the "R-word". It makes me cringe every time i hear it..

God bless you all!

Julie O said...

Kelle,

This post was deeply moving, and I read it very slowly so that I could take in every word. I am so glad that you addressed the "r" word. In the past, I also used it in "flip" ways, never thinking whether I was offending anyone. Then our little one arrived last year, and now it's like a knife in my heart when I hear it. I actually had a neighbor (doctor) say it to me about a month after our baby arrived. I always wondered if it bothered her afterwards...

As always, thank you for all that you have done for me and for many others, and for giving us a glimpse of your beautiful life.

The Ebert's said...

One of my favorite posts....so sweet:) I babysat Betsy (she has down syndrome) when I was 16 for about 3 years. She was 3 when I started, I remeber her parents and siblings leaving her with me while they went and did all these fun things. I saw no difference between her and her siblings, she was the funniest, sweetest, sassiest girl! I started asking them if I could take her places and they asked me "do you really want to" I took her all over when I babysat her, she went to my high school sporting events and all my high school friends loved her too. Her parents finally saw that she was no different and a year later thanked me for opening their eyes. I am happy to say that Betsy is graduating from high school in May and is amazing!

Chrissy Farnan said...

Beautiful, eloquent and a 3-21 cutie ready for the world to open their arms and welcome her!

Thank you for sharing your beautiful family.

Julie M said...

Happy 3-21 Day!! We are celebrating that wonderful extra chromosome at our house too. I can't believe how much Nella has grown in the last month or 2. Thank you making such a difference, for increasing awareness of those who just happen to have Down Syndrome. And please, give her back the paper towel ;)

Our Family said...

this post is beautiful. I am once again tearing up because of your amazing words, your beautiful family, and I will admit a few tears are because of Nella's pigtails!! LOVE THEM!! I could totally relate to this post and the conversation you had at the dinner party while pregnant. With my first child, K, the Dr thought she might have Down Syndrome. I was scared, so afraid. But hubs and I decided to not do any of the tests, it wouldn't change anything and we wouldn't do anything different, so we would wait. K came and no Down syndrome. I have always believed God gives you what you can handle. And lady, you "handle" this beautifully, amazingly. You have educated me more than any of the books I read or articles I googled. So for that, thank you. I pass your blog and story on to others every chance I get. You truly are an inspiration. (And Nella being the cutest baby EVER doesn't hurt!!) =) God Bless!

ebelknap said...

You wrote "They both are lovely, and we are lucky." So, so true. Nella is looking like such a toddler these days. The sweet baby has turned into such a beautiful capable big girl.

Julie said...

We do not have "disabilities" but "different abilities" each and everyone of us:)

cheryl said...

Love it...simply love it...sharing it...enjoy the day...if we were not uniquely different from each other, how boring the world would be!

crumble yum-yum said...

Kelle, at plus15 campaign (www.plus15.org), we follow your blog with laughter and tears. You may want to see the amazing photos our community of moms, dads, brothers, sisters, grandparents, aunts and uncles have shared with us in honor of World Down Syndrome Day.
http://www.flickr.com/photos/plus15campaign/
Our goal is to raise awareness around the need for more funding for Down syndrome cognition research, and also to raise money for our own funding of this research. We're adding faces and a message "One of them is ME!" to our campaign. Thanks for all you do.

mandi s said...

THANK YOU for posting about the r-word! I love your analogy about the tortoise and the hare. I'm going to start using that (and of course I'll direct everyone back here to find it)! Love your blog.

Kate said...

Oh my goodness... I know your girls are their own unique little people, but put Nella's hair into pigtails and suddenly she looks SO much like Lainey. :)

Adrianmomy said...

Thank you, thank you so much for your beautiful words. I needed them today.

Jana said...

What a little beauty!!

Cartz said...

First - holy cute pigtails, batman. Adorable. And...(maybe more importantly, maybe not)...thank you. Being a mom has changed the way I think about nearly everything. Talking with my husband about the possibility of TTC for #2 has spurred conversations about DS, how scared we'd be, how much we'd love our child of course, and everything in between. I can honestly say that your blog has helped ease the fear factor, even if just a little.

As for the "r word" I have noticed how frequently it is used among friends, peers and family and have made a conscious effort to not use it, and remind those around me not to either. Sorry for the rambling, but this post is just timely for a lot of recent soul searching, and I'm grateful for the glimpse you give into your life - DS related and not. xo

SarcasmInAction said...

Ok, the little sad/crying/I may through a tantrum cuz you took my paper towel face is so adorable! When my 17 month old does that face or starts a tantrum, I have to hide my smile because she's just so indignant and upset yet so friggin cute at the same time!
I wish our toddler girls could play sidewalk chalk together. Although my girl eats it more than colors with it :)

Beth said...

Beautifully said... My best friend's brother was born 13 years ago with Down Syndrome and we both swore off saying the "r" word. Ever since then, every time I hear that word, I stop and kindly ask them not to use it. I love how you make it a part of your life and not your life. I have a profound hearing loss due to a childhood illness and my parents lived the same way. They could shape their life around the fact that I couldn't hear OR they could embrace that despite my hearing loss, I survived the illness and I was now healthy and happy. Thank you again for sharing. :-)

Esther said...

LOVE Lainey's protective little hand on Nella's side in the picture of them on the bed. She'll make a great little mama one day!

Kristinmo said...

Beautiful- as usual. I love that picture of Nella and your step son foreheads together. So sweet!

Also- my son is 17 months old and has the same world-ending meltdown when I take his paper towels away.

Laura said...

I have read your blog here and there and I think you put our thoughts into words so well. This is a beautiful post. I feel strongly about what you have written, but it helps to have a reminder to be aware of the person not the differences that they have.

I hope you don't mind if I share your post on facebook.

Dina Matchinsky said...

Kelle, seriously those pictures of Nella and the toilet paper had me in tears. She is sooo cute, Tyce does that too!

Rachael said...

Your post was wonderful to read!
It's funny, I always forget that Nella has Down Syndrome. Well, maybe not forget, but it isn't the focus for me. I just see a wonderful little girl! Which of course she is!
But I love reading about her, and her triumphs, and it's really inspirational to me. And that's in large part to you, and how you choose to raise her. And that's inspirational as well!

SLM said...

My 14 (almost 15) month old actually got therapy from Debra Beckman (of Beckman Oral Motor fame) for the first several months of his life because he had significant oral-motor issues. And I have two friends in town how were trained under her as well. It's amazing what resources are out there for our children. I only wish all mom's were able to utilize them!

She was wonderful, and it was so fun to catch that little snippet on this post about Nella having the same techniques done. :-)

Mark, Wendy, Dale and Rose said...

An inspiration.

chantelle said...

I love how you can make me go from the ugly cry to the ugly laugh in one post! haha! Nellas a rockstar we all know that! I love the pigtails! So,so,so adorable! Keep on doing what you do girl! Your whole family is an inspiration and I see a whole lotta happy love. I love it.Thank you!!

Vicki said...

I am so in love with this post and all of the shots of your girls! You always seem to say what we mamas feel, thank you!

Steph said...

Go Nella for whooping her one year therapy appointment! My Daughter was just discharged from her Early Intervention Therapy, and I cried like a baby, I was so happy and proud and amazed by how fast she's growing and how far she's come.

I think all Little one's have a great inner badass.

Lauren said...

Absolutely wonderful.

ABC said...

Those little white bows on those tiny blonde pigtails are just PERFECTION. Thank you for sharing. Just beautiful.

Robin said...

love this post! please give nella back her paper towel...she's too cute to be that sad! ;)

Heather said...

I could say so many things about this beautifully written post - I LOVE the pigtails! :)

j210209 said...

So beautiful.. Thank you x

J Scheppl said...

Simply beautiful!

kaylabirch said...

Wow, she is such a sweetie. I know that children with down syndrome are very special and that God put them here so that we could learn from them. She is so precious. This post gave me a greater understanding of children with special needs, so thank you for all you do.

Wesley said...

Amazing post. I agree that the "r-word" can be very degrading. I, too, was one of those people who had said it before without even thinking of how it'd come off or who it could hurt. I look back on those times and regret ever using that word.

I fell in love with my husband after watching him interact with his aunt who has cerebral palsy and is mentally handicapped...or as we like to say - handiCAPABLE. Watching him talk with her and help her and joke around with her and LOVE on her...melted my heart. She has brought so much joy and love to my life. My life wouldn't be the same without Peggy in it - she always brings a smile to my face and has taught me so much about myself. She is loving, funny, a hard worker, amazing, beautiful and perfect just the way she is.

Thank you for speaking out about Down Syndrome and all the amazing people out there that have it and for telling their stories. Thank you for giving us your perspective and for always being so honest about your feelings - whether they're fears or those big BOO-YA moments when Nella reaches a milestone just like any other kid in this world. :-)

Adrienne said...

Beautiful post to celebrate our beautiful children!

Jamie said...

I'm not sure why but the pic of Nella and your son with their foreheads touching made me stop and stare with tears filling in my eyes. The innocence of them both..the love that comes from a big brother... we all know his love for her will grow stronger and stronger, always protecting his baby sister!! Oh, how she'll teach him such deep love.

Julie said...

Kelle,
You truly are an inspiration to the world! I came across your blog a few months ago and everytime I log into my google reader and see that you have updated your blog I immediately click to read on. You make me smile, you make me laugh, you make me cry, and most of all you make me live for the moment each and every day. You have the most beautiful family in the world and you are a super dooper amazing photog as well! I even listen to your playlist all day at work as I just totally love your music choices. Infact, last night I listend to "Summer Skin" by Death Cab for Cutie and immediately thought that song would go perfectly on your playlist. Youtube it - its a great tune. Just thought I would share it with you! It gets you in that fun summer mode :) (I live in Canada, close to Toronto so we aren't quite enjoying the summertime weather you are right now)
Just wanted to say THANK YOU, for your fabulous blog and for being such a fabulous person yourself!
Happy trails,
Julie :)

The Doke's said...

I have chills, thank you for such a beautiful post.

Looking Up said...

Kelle, Thanks so much for helping to make others aware of how just how beautiful the "chromosomally enhanced" life can be. We celebrate our little guy (who happens to have DS) today & everyday. :)

Lauren {sippinglemonade.com} said...

Love it, Kelle. Love it. Just beautiful. Thank you for this blog.

Lexi said...

Kelle- I came to your blog and it played the song from Twilight. I immediately started to cry. This is the song that I used to listen to as I tried to relax while I was pregnant with Abby. I used to put the ipod speakers on my tummy, so she could listen, too. We didn't know until she was born that she had Down syndrome, either. Your post was beautiful. Happy Down syndrome day!

The Hawkins said...

Those are two beautiful girls!

Katrin said...

Perfect words, beautiful girls and in love with your life.
I myself am on a journey with my kid, don't know where it is heading but I have all I need a mummy's infinite love.
Thank you for sharing.

Kathryn said...

This is good stuff Kelle, very good stuff!

Jessica said...

I'm a regular reader, but not a regular commenter. I just wanted to say that this post is beautiful and inspiring. You really have done so much good with this blog.

My Thoughts said...

Thanks for sharing Kelle. Beautiful as always- both your words and your heart. (-: I appreciate being allowed to follow along on your journey!

Jeff & Nicole Inglis said...

I have a niece with down's and she has 3 other sister's with 46 chromosomes but there is something just extra special about Kenzie that none of us would ever trade!

Her heart and spirit are something that could never be replaced and we cherish!

Thank you for sharing your daughter and her story/journey with us. You have insipired me to show people how incredible someone with Downs is and how quickly they capture your heart!!

Rachael said...

Ahhh... I come here for the "O!" face EVERY. SINGLE. DAY. Sweet girls make my day. Your writing makes the world of motherhood, extra chromosones or not ... way more beautiful. And I am so, SO relieved to know that even Amazing Superheroes like Nella eat paper towels too. Now I can tell my one year old she's COMPLETELY NORMAL, instead of Crazy Fiber Addicted like I was thinking. :-) Hugs.

Hailey said...

Beautiful Kelle!
I love that you added the fact that had you known before she arrived, it would've have changed a thing. I actually never even took the DS tests when I was pregnant. I told them it didn't make a difference to me. He was mine.

Gotta say, I love the picture of Nella where Lainey's in the background making a goofy face. Had me cracking up. :)

Kristen said...

You are such an amazing mother! Thank you for sharing this with us!

Jennifer said...

GREAT POST TODAY! :o) Gonna share!

Love the pics of Nella on the verge of tears! Just so cute! Pig tails! Oh my, adorable!

Gwen said...

My daughter who is 14 now has Turner Syndrome and is missing a whole x chromosome. She is the sweetest best daughter I could ever imagine having. Yes she has some medical issues but nothing serious. She had physical and occupational therapy from the time she was a baby through 3rd grade. At one and 1/2 her teacher who came once a week to our house was asking her to build a big block tower for an evaluation. Well my daughter who has never said anything like this since then said "I don't want to stack anymore damn blocks." We were all surprised and laughing. Thank you for your incredible blog. I visit often but this is the first time I have ever commented.

Gwen in Pensacola, FL

Wren said...

I can't believe you took her paper towel away...although her sad face is just as cute as her happy face! Today is a reminder of just how lucky we are to be blessed with that something extra! Beautiful post in honor of our beautiful babies!

Shelly said...

You have a way with words sister! Nella is the prettiest little girl on the block...i just love her sad face....to sweet! She MELTS my heart!

Jennifer said...

L-O-V-E the crying pictures! She looks so much like Lainey in them.

Diana Doyle said...

A beautiful post today Kelle....I've been thinking about 'why' in life we are sometimes 'given' our special children?

I think we are blessed to have been given these amazing souls who continue to teach us about LIFE....about the simple things we often take for granted....how love has no boundaries or borders.

I've found a new purpose through loving our daughter Savannah, as you obviously have in Nella.

Your wonderful words will continue to educate others on how simple it is to embrace all children, no matter what...that in itself is a miracle...like your gorgeous girl Nella!

with love
Diana x

Tina said...

Love your post today! Thank you! I am always looking forward to what you have to "say". I have to tell you, while reading your post I was holding my 8 month old daughter and while looking at sweet Nella's pigtails and she made a squeal/giggle sound I never heard before! So precious! My girl was trying to talk to Nella! :)

Dawn @ Musings from the Pigg Pen said...

There are so many wonderful things to say about this post...too many that I know I'll forget some. first, this might be one of my very favorite posts of yours ever. Ever.

Thank you for bringing attention to the ugliness of the "r word." I do not have a special needs child but cringe every time I hear the word...such an uneducated way to refer to someone or some time in place. Your blog touches so many so hopefully it will change even one person's terminology.

Love all the pictures...from the pigtails to the pictures with the boys and then the paper towel pics.

Thanks for this poignant post today...love it.

www.piggfamilyblog.blogspot.com
www.ourcupsrunnethover.com/blog

Hazel said...

A moving and thought provoking post. My brother has aspergers and we have all dealt with his acceptance by others, and been hurt by rejection at times. With such a loving mama, who cares not just for her special little girl but others, Nella will have the best support any child could hope for. Thanks Kelle.

Bridget said...

The picture of her crying is breaking my heart. "That's my daughter in the water" isn't helping.

Kelly said...

Amazing testimony for Down Syndrome Awareness day. We're all different, thank God, but it always astonishes me how we are all really the same.

Ali said...

I rarely comment simply because I think it might get lost in the crowd, but I wanted to today. This post is great. I love that you write about things you didn't know before but would like people to know now; not degrading but simply sharing. I know Nella is going to do great things!

Jane@flightplatformliving said...

that got to me! as a mummy of an adorable little girl who has smith magenis syndrome, you sum it up beautifully. thankyou thankyou thankyou xxjane x

Matt and Mollie said...

"Respect" is the new R-Word. I have this sign hung in my classroom-A classroom filled with 8 amazing kiddos that have some kind of disability. It is all about educating people to make this world better for people with disabilities. I know you live in Florida, but in a couple of years Nella will want to go to Summer Camp just like her sister-There is a place Camp ASCCA-Alabama Special Camp for Children and Adults with Disabilities. The largest and BEST camp for children and adults with disabilities in the world! Check it out: www.campascca.org-It will change your life! Thanks for making people aware!

Marie Rose said...

the pictures of the paper towel exchange are classic. Love them!

David and Courtney said...

well said! todays entry is just another reason i love, love, LOVE your blog.

tjwillis said...

Your babies are so beautiful and I love to read your blog! I had my first baby girl last July (Cailyn "Scout") and girls are simply wonderful!!! I love little baby boys too but little girls...well...you know. They are something pretty special! :)

Carrie said...

thank you for sharing your story, and for Nella's first pigtails which are beyond words, and for Lainie cozied up with her little sis on the bed and for the crying paper towel face which had me in stitches.

Thank you for teaching us all how to be better mamas and more tolerant people.

thanks for what is always a great laugh or great cry during my otherwise tedious work day.

thanks for being you.

Helen said...

Wow. With her hair up in those sweet little pigtails, Nella looks just like her big sister!

Thank you so much for writing such a beautiful blog. I adore reading, and so do my boys (3 and 1). They love to point at pictures of "bubba" Nella and my 3-year-old has even asked if we could visit to play. :) Might be a bit hard when we live in New Zealand! If nothing else, your blog has made me determined to teach my boys to see the person, not the syndrome, because that is what Nella (and you) have taught me. Thank you.

Jessica said...

This DEFINITELY made me tear up a bit. Thank you SO SO SO SO SO SO (x million) for sharing this! Love the pictures and the paper towel sequence. Hilarious!

Quoting from Temple Grandin--"Different, but not less." I say AMEN to that!!

Mrs.T said...

Nella is starting to look like a "little girl" and not a "baby" anymore!

Melissa Stevens said...

This was such an inspiring post. Your pictures are so adorable. You are such a great mom and I love reading about your family!

melstevens1.blogspot.com

Ugleslottet said...

Thank you for writing and sharing ...i love every sentence you write and every word you say.Amazing!:)Beautiful girls, both of them...Hugs from Norway.

Jaki said...

I am not blessed with a child with an extra chromosome but sometimes I wish for one! Because of your blog about Nella and other blogs about those adopting kids just as unique as Nella....I have been lead to consider adoption of a sweet boy in another country that will face an institution in less than a year just because and only because he has an extra chromosome....Today, on World Down Syndrome Day, I joined the "sisterhood" that I long to belong to and blogged about Elden...the boy born in my heart that I ache to bring home. I would be honnored if you would take a glance at it. You can see how your little Nella via you telling her/your story, is helping others a half a world away find a family that will love them for who they are instead of who society thinks they should be. Thanks for putting into words so beautifully...your life!!!

http://jjberggren.blogspot.com/2011/03/21-3-11-world-down-syndrome-day.html

BRH said...

I am absolutely guilty of using the "R" word. Most times, like you mentioned, I use it in reference to myself. And I shouldn't. And I'm going to try to delete it from my vocabulary. Thanks for the push to do so. I think I needed it.

Your blog--and your girls--are a true delight. Enjoy your day...

Beth

Kathleen said...

Amazing. I dare to reverse Ms Oliver's wisdom... By telling about your beautiful children, you astonish us, and we begin to pay attention to our children and the world we wish to raise them in. A world where every child is not only loved and cherished, but fully appreciated for their unique capabilities. What a gift you have given to us. Thank you!

And, Nella's piggies. C'mon?! Adorable!

Kathleen in Chicago

Jenn said...

beautiful, absolutely beautiful

The Trousdell Five said...

Your blog always inspires me, but on a day that we are 2 hours away from a cerebral palsy diagnosis, this couldn't have been more well timed. A different condition, but similar feelings as a mom. Thank-you.

Ruth said...

I work in genetic research, William's syndrome to be exact. I had never heard of it until I took the position. I've been at the medical school for almost 3 years now, working with this amazing geneticist and as brilliant as she is, I've learned so much from the families. I love each and every one of them and I feel my life has been blessed by them. I cannot by any stretch of the imagination know what they're going through because I don't have a chid missing genetic material on chromosome #7...but I try to be there for them...their needs, their venting, their triumphs and misses. You're a fabulous mom, don't ever forget that.

Michele said...

Excellent post! I've always hated the "R" word and cringe when people use it. In fact, I remember in that movie "Something About Mary" there was some scene in the beginning where some kids are making fun of children with special needs (don't remember if they used the R word or not). I was just sick watching it - and to think it was a huge hit. I hated that movie and the fact that people laugh at others being treated that way.

I love the post above where someone wrote "Respect is the new R word." That is great! Thanks for the post.

Lisa in Sweden said...
This comment has been removed by the author.
mom & son said...

Your photos are always beautiful and
your ideas are brilliant!

Kirby Johansen said...

Beautiful!!! Crying!!!

Rachel said...

muchas gracias! so well said....I have a son with Asperger's and I really needed to hear your words today.

susan said...

THANK YOU KELLE!!! For making Down syndrome something that is easier to 'talk" about. Thank you for sharing your story, pictures, heart. I do not think you will ever no how many people you impacted. I also believe you have saved lives.. Because you made it look less scary. Hugs.

I think we have all done some looking back today. This week, this month. I wrote this on Fb today

If I could go back in time to June 10th 2008 on the 6th floor at about 2:00 pm I would tell myself a couple of things.
There IS LIFE after Down syndrome
There is going to happy times
There is going to be times that make you question why me why now but then there are times that you say why not?
She Will walk and when she does you will sing praises and cry like a baby
She WILL talk
She WILL play with babies and dress up and other things that little girls do.
She WILL make your life richer and better
She WILL do things in her time and when she does they are even extra sweeter.
She IS a Gift that God gave us.
She WILL make your marriage stronger
She WILL make you closer to God and have conversation with him you never thought you would.

Deborah said...

Beautiful post...and adorable girl.What a blessing she is!

Ashley @ Coffee and Apple Juice said...

Thank you so much for sharing. She is beautiful Kelle.
WOW!! She climbed into the bath tub!! ... My 16 month old who does not have Down Syndrome has yet to do that.... there is no holding this girl back... :)

Allecto said...

I work with children with special needs every summer, I'm training to be a Learning Disability nurse, but I've never learnt as much from all that experience as I do from reading your blog. I know what it's like to care for children with special needs but that's one week at a time for 8 weeks a year; never 24/7, 365 days of the year. This post had me in tears. The photos are beautiful and your words are so moving.

It's A Love Story said...

What a perfect Post. I work with children who have down syndrome. Its a high school that help prepare them for the future so like any other "Normal" child whatever that may be to, if there are is a child like that. These children are one of the happiness child I have ever seen . Ilove reading your blog because I get to see a parent point of view

katie said...

You have a beatiful soul.

Kara said...

Wow!! What a beautiful post. I couldn't agree more with you about the "R" word. Your blog perfectly illustrates how powerful simple words are. We can either use them to spread joy and love - or not. I feel the exact same way about the use of the word gay, as in: "that's so gay". What does that even mean?! I love your blog and it's funny how I really do almost forget that Nella has Down Syndrome until it's included in one of your posts. She is just such a beautiful little girl!! Here's hoping that the future holds a more tolerant, accepting world for all of our children, because you are absolutely right - that's all that any parent wants.
Thanks for sharing!!

Pemberton Family said...

This was beyond beautiful. I sit here pregnant with my 3rd child with tears running down my face reading this. I have 2 boys ages 3 and 1, we do not know the gender of this child, we also choose not to do the screening that checks your baby for Down Syndrome. It doesn't matter to us, much like it doesn't matter to you. Lainey and Nella are beautiful, they are loved and their life will be what you as parents make of it. Which as far as I can tell you guys are doing "one helluva job". God Bless, praying for all of you!

Alaythea said...

I am so glad I found your blog - Nella lights up the day! She just beautiful and I love looking at photos of her sweet little self. You have opened my eyes to see the beauty in children with syndromes (Down's or other wise), thank you!

Ami said...

Kelle, I haven't commented in a while, though I still read daily. But today, I feel compelled to respond. One of my triplets was born with a bilateral cleft lip and palate, and I was astonished at the things people would say about him. Furthermore, I have grown up with a cousin, (who just turned 40) and has Down Syndrome. He is, and always has been amazing. My parents taught us long ago, (as in, elementary school long ago) never to use the word 'retarded.' I also wrote a blog post months ago, about that very word and how degrading it is. I applaud you for your encouragement of others to rid their vocabularies of it. Thank you. :)

Julie @ my tiny bookworm said...

Thanks so much for sharing this today.

I love the piggy tail picture. Nella is such a sweetheart.

Celeste said...

Beautiful children, beautiful mama, beautiful family. What a wonderful and insightful post. Your blog is my favorite, and I always get so excited when I see there is a new post! Both of your girls are just fabulous!

Laurie and company said...

you are blessed. nella is such a beauty.

hugs from a mom who LOVES your blog.

aimee said...

this post was absolutely beautiful! i had tears of joy streaming down my cheeks :) i shared the mary oliver quote with others that was amazing... also sent others your way hopefully to read this post!

Phill, Allie, and kids said...

Kelle I just have to say I love your blog. In just a few shorts months of reading your blog, you have taught me so much. To be honest, I have always had a love for kids with special needs. But after reading your blog I feel like I have a love for Nella just as if she was my own. Your girls are adorable and you are amazing.

Jen said...

You've opened my eyes to the world of DS :) Vocab of those around me will be policed :) I'm all over it :)

I was in tears reading...that is until I got to the paper towel photos and I had to laugh out loud. I have a 17 month old who thinks the world ends when I take garbage away from her.

It's good stuff. Your girls are beautiful...and you rule.

Cheers to celebrating World Down Syndrome Awareness day! We're celebrating in MI for you!

Razmataz said...

Kelly, as usual a brilliantly writtedn piece. When I was in High School (I am now 50 so goign back 34 years) a program was introduced at our shcool that I will never forget. It was the TMH program. I cring now because that stood for Trainably Mentally Handicapped. I still can;t believe how awful that name was. But the program was wonderful. There was a classroom of kids, all with Down Syndrome who joined our school. Although they had their own teachers for core subjects, they joined the rest of the school for lunch in the cafeteria, sports days, assemblies, office work and pretty much everything we all did. We taught them to swear and have food fights in the caf, and these kids taught us how wonderful that extra cromosone was. It was a resounding success. One of the most popular jocks had a brother in that class, so that helped with immediate acceptance as Mark was already known to a large circle of kids. There was an unstated rule of no teasing, mimicing and name calling. I think, truth be told, this was one of the best things our school ever did. Integration is everything as we were ahead of the time I think.

I learned so much from those kids, the program and although I shudder at the name, I was very proud of our school for setting a precident way back when. Like anything it is about education....I think people are at their worst when they lack information.

You have 4 gorgeous children. You are blessed.

Stephanie said...

I am a Special Educator, and I know that very soon, the "r-word" will not even be so much of a medical term. The term will now change to "intellectual disability."Thanks to a very special and beautiful, beautiful girl with Down Syndrome, "Rosa's Law" will soon take effect and the "r-word" will hopefully become a less-used term. Obama said so!

Jackie said...

You have a beautiful family. Your post reminded me of something exquisitely beautiful about a story on the World News Tonight with Peter Jennings in 1986. It was a story about Down Syndrome. I will be blogging about it tomorrow, 3-22-11, because you have reminded me that it's a story I've treasured all these years, unforgettable and powerful. It shed a light for me on the world of Down Syndrome in an incredible unforgettable way. Bless you and your beautiful family. I'll be back to soak up some more of the love here on your blog

Heather said...

One of my absolutely favorite posts I have read!! Thank you!

Abernathy said...

heck yes the tortoise won.

Debra Bonson said...

perfect and beautiful.

jeana said...

I spent the other day hiking with my son and his two friends. My son and one friend have autism and their friend, a little girl named Erin with DS. She was just a delight...as were the boys! I thought of you and your Nella, what a special life you have, we have.

Daniele said...

This was a beautiful, touching, and real post.

Last week my daughter who is about the same age as Lainey, had her first day of her new park district class...just once a week for little ones to do preschool-ish activities and play, and get used to the concept of doing it without mama staying. I got into the elevator with another young mom, she had a double stroller with two girls in it. I adored her newborn girl facing my way and saw her older daughter's feet swinging in the front. I asked how everyone was feeling about the whole "drop off" thing since for many of our kids it was the first time...it was exciting. She said kind of quietly oh, well, my daughter will have an aide with her the whole time, she has down syndrome. I had seen these girls all get into the elevator but hadn't noticed. I don't know what kind of or if she expects a certain response, but I continued to chat about how exciting this will be for our girls to be "big girls". Her mom and I really hit it off. I am so glad that our girls will get to be friends. I have thought of you and Nella a lot since we met our new friends last week.

"I hope you are more aware of every individual's capabilities and maybe, your own as well."

Yes!

Stef said...

oh my gosh, Kelle. You got me with this one. Every female hormone in my body is sobbing as I read this.
What a beautiful post. What a beautiful life Nella has.
I love your post about Downs. I wish it was talked about in a more comfortable, normal way. I hate when I hear people whisper it. I hate when it makes Dr's uncomfortable to talk about blood test and ultrasounds to see if your child is "flawed". Makes me cry every time. I love your healthy outlook on it and your realistic version of it all. You're an amazing Mama.

Kacey Haffner-Bruce said...

oh that sweet little sad face! she is so precious!!

Lovely Lindsay said...

i pray for Nella's acceptance through out her life, daily. that may seem strange, since i don't know you, or her, but in all honesty, i have fallen in love with her smile. she is gorgeous, and maybe it's her, or the way you are so proud of her, but it make me want to know more about down syndrome!

Hillary said...

How do you get such awesome shots of nursing your little one? It looks you take them yourself, and I wish I could but maybe my arms just aren't long enough! It's a silly question, but it'd mean a bunch to know the answer.

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