Wednesday, May 29, 2013

The World Lies Upward

I spent this morning talking to a mama on the phone.  Twenty-nine years ahead of us on this journey, her voice oozes with the same love I feel for my own kids except there's more--years of stories, struggles, victories, experience.  You can hear it behind her words, you can feel it in her voice.  Her thirty-two-year-old son shares Nella's extra chromosome, and after speaking briefly with him last week during a radio interview, I can't wait to meet him and his mama soon. We look ahead on this journey, following the path paved by many before us, and we learn from other mamas who fought hard and loved much. 

"What can't Nella do?" my friend asked me the other day.  "I mean, seriously, what are the known things she'll have to face?"

I thought for a moment and rattled off what I know--cognitive issues, muscle tone stuff, increased likelihoods for a number of medical complications.  Together, those things spell out that things will be harder for Nella.  Harder to learn, harder to prove what she knows, harder to gain acceptance, harder to get a job, harder to make friends, harder to claim the rights we all enjoy and take for granted. 

That sucks.  And when you love someone so much--so, so, so, so, much--and you stare at her little three-year-old self all smiling at you and completely na├»ve about her future and how hard it might be--sometimes you feel like you're going to vomit. 

But there's Fight or Flight.  And I can fight like Mohammad Ali.

Sometimes when I'm running and I feel like I want to stop; sometimes when I'm cleaning and I'm too tired to finish; sometimes when I'm working and I need a break; I think about Nella and how much harder she'll have to work and all the extra obstacles she'll face in life.  When I think about that?  I can't stop.  Sometimes I even play silly games in my head, ridiculously pushing myself as if in doing so, I'm taking some of the burden off my child. 

I wish it was that easy.  What I can do is believe in her.  Love her.  Read to her.  Celebrate her.  Teach her. 

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"I am conscious of a soul-sense that lifts me above the narrow, cramping circumstances of my life. My physical limitations are forgotten- my world lies upward, the length and the breadth and the sweep of the heavens are mine!” ~Helen Keller

So that we do.  And we will continue to learn as we support each of our children, creating as best as we can an environment that both challenges and celebrates them. 

I received an e-mail a few weeks ago sharing a speech that will be delivered to a graduating high school class this year.  Carrie, who graduated from the school in 1997, also has Down syndrome. 

Carrie as a baby in 1976:

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I'm thrilled she's letting me share her speech with you today.  She's worked very hard, and I'm so inspired by her determination.  No matter what our circumstances may be with Nella (and Austyn and Brandyn and Lainey and Dash!), stories like Carrie's provide hope and promise.

*****

As a graduate of the class of 1997 I am very honored to speak to you today!  It took most of you who are graduating today twelve or thirteen years to complete your education.  My education began in 1976 when I was six weeks old and enrolled in an Early Intervention Program and continued until I graduated twenty-one years later with an I.E.P. diploma.

While I was here at DCS I repeated kindergarten and second grade and then was mainstreamed in third grade when it became obvious that I also needed to be in special education classes. The blend of regular and special classes, known as inclusion today, continued throughout my schooling here.  Speech therapy for language delays and articulation also started when I was six weeks old and continued until I graduated.

The extended time and intervention occurred because I was born thirty-six years ago with Down syndrome. There are three types of Down syndrome.  Trisomy 21, the type I have, is one where every cell has a complete additional 21st chromosome and is the most common.  The reason for Down syndrome is still unknown.  It usually results in delays of physical, cognitive and speech development. 

Heart surgery, the replacement of the tympanic membrane and one bone of my right ear, cataract surgery on both eyes, a thyroid condition called Grave’s Disease plus sleep apnea are my most important medical issues. Daily workouts at the local YMCA six days weekly along with Tae Kwon Do two evenings a week help to maintain my physical fitness. Unfortunately, those of us with Down syndrome have slower metabolisms and tend to gain weight easily.  

I would like to point out that it was not until sixth grade that I really understood how Down syndrome was affecting my life.  It bothered me that I could not learn and keep up with my classmates and why some students would tease me. I am so thankful to my Dad who was able to share in simple terms what was going on. He told me that my learning would always be a challenge and that repetition, visual aids, hands-on activities and tutoring support would be needed.  My Dad and Mom helped me understand that I had two choices in dealing with students who unkindly teased me.  I could ignore them or try to educate those who were not kind to anyone with a disability.  I have chosen to educate.

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I actually wrote a story about this called “The Special Tomato” here in an English class.  It has been published in a book and many publications plus there are note cards. You each will receive one this morning! 

The support and the encouragement of so many teachers and administrators in this school were extremely helpful to me.  I went on to complete a two-year program in Early Childhood education at BOCES and then attended Herkimer Community College where I received a Teacher’s Assistant certificate. It took me four and a half years to complete my college work because I only took one or two classes a semester. I learn at a different pace but I do it!  Those are my “True Colors”!

Presently, I am living independently in Rome, NY with staff assistance forty-two hours a week through the NYS Self-Determination “Individualized Initiative” program (say that ten times real fast!).   I work with toddlers at Upstate Cerebral Palsy, teach a Tai Chi class to the elderly at the Rome Hospital, and give self-advocacy presentations both locally and nationally. None of this could have happened without the education and support I received here.

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I hope that you graduates feel thankful like I do for your education and experiences here at DSC as you move on and find your way.  I would also hope that you would be open to diversity and those of us with disabilities.  My quote is: "I took the “dis” away from disability and made it my ability to make this world a better place for all of those with special needs”.  Yes, I have Down syndrome and want others to know I have the same hopes and dreams as most people have.  I can feel the excitement and a little of your apprehension now as you graduate and begin to realize your hopes and dreams.  You have the “true colors”: knowledge, heart, and duty to make this world a better place.  Congratulations class of 2013!

*****

As we continue on this journey, preparing for school and new social situations in a few years, introducing letters and words, investigating new learning strategies for Nella and constantly stretching, shifting, and challenging our perspectives, we hang on to those powerful words of Helen Keller:  "...my world lies upward, the length and the breadth and the sweep of the heavens are mine."

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Thank you so much, Carrie, for sharing your story with us. 

133 comments:

Tiffany said...

That was a beautiful speech. Thanks for sharing it with us.

lynxymama said...

hugs to all!!

Renee said...

That is beautiful! What an inspiration to us all. That truly touched my heart. :)

Melina said...

Oh wow, I learned a lot from this speech, a lot about things I never knew were possible. just effing awesome!!

squigglyrainbow said...

I have tears... precious story and so inspiring xxx

Melissa said...

Absolutely beautiful.

Sarah Ochoa said...

tears streaming down my face! My cousin Debbie has that extra chromosome, too. My uncle once told me 'all children learn, they all have the capacity. Debbie's was just narrower, so we had to spend a longer time giving her knowledge, in smaller chunks, more repetition. The depth was always there.
Debbie is blessed with a family who went to the ends of the earth to make sure their child was educated and led a fulfilling, happy life. At 42 years of age, she is thriving still. Nella is blessed that way, too. The road won't be easy- but don't forget its about that road, not just where she ends up.
love,
Sarah

Averyl Minori said...

Tears & hope.....

PlottFamily said...

Wow! All I can say is wow, and yes you are every bit as strong as Ali. Makes everything else in the world seem so small when I read this! Keep up the good fight!

Kylie and crew. said...

Awesome!!! Just awesome. I can't wait to read about what amazing things Nella is doing in her life in 20 years. Someday she will be giving this speech! As someone who has grown up around people with major disabilities there are so many amazing stories like this. I love how you weaved your beautiful words together to move your readers hearts. I think it is so incredible when I think about how many people you have imparted new thinking to with your writing. I love your heart.

YeamieWaffles said...

Beautiful post as always Kelle.

YeamieWaffles said...

Beautiful post as always Kelle.

priest's wife said...

beautiful!


If this community could spare some warm thoughts and prayers for my friend's 5 year old son Joey- he is battling leukemia....(I guess some kids with DS are more likely to get this....but he is a fighter and so is his family!)

kdactyl said...

Oh how I love this. Not much more I can say....seriously...I just love this.

Karaleen

Julie Larsen said...

I have a nine month old son with Down syndrome and share so many of the same thoughts and worries about his future. He looks at me with these happy brown eyes and huge smile and I can't help but worry about the difficulties he is bound to experience. Thanks to people like you and like Carrie bringing awareness, I have great hope for his future.

I wrote my son's birth story on my blog before being introduced to Bloom...and seeing how much our stories had in common gave me so much peace during such a traumatic time in my life. I had so much shame about some of my feelings, and knowing I wasn't the only one was very comforting. Thanks for sharing your family with us!

Nicolette Gawthrop said...

carrie,
so grateful to read your speech. it really touched my heart. you have had incredible parents, and i am so happy to have read your words. your hard work has paid off, and your true colors are shining bright.

much love.

and kelle,
nella has been such a blessing to many. thank you for sharing her with us. seeing her, and reading your words about her is expansive for my being.

big love, mama.

Shelley Lee said...

Absolutely beautiful......

Amanda said...

What a beautiful speech! Carrie has put something so beautiful into words more eloquently than most people I know. I was smiling while reading this but then I got to the part where she went to Herkimer and lives in Rome... I gasped! My whole family lives there and my parents recently moved back. What a truly small world this is! Thank you for sharing this, Carrie's inspirational speech was just the reminder and smile I needed today... "You have the “true colors”: knowledge, heart, and duty to make this world a better place."

nanny bee said...

I have a granddaughter that has recently been diagnosed with some pretty severe learning disabilities. I love this speech and hope that my Lauren will reach her highest potential. It helps to read things like Carrie's speech to know that my hopes are not off target.
Your blog and book have provided hope and guidance in learning to accept our children/grandchildren and keep moving forward. Thanks Kelle.

Mary Evelyn said...

Kelle,
Thank you for sharing this. My son also lives with disability and thinking of what he will face can feel overwhelming and it kind of breaks my heart too. I've never read that Helen Keller quote before but it will certainly stay with me.
Mary Evelyn

Argyrie said...

What an amazing speech..she is such an inspiration. Nella is so blessed to have been born into such a loving, accepting and creative family. She will truly blossom and soar.

Jillian22 said...

So beautiful. Carrie, you are a beautiful woman, inside and out. And Nella is too! Nella needed a mommy like you, Kelle- that's why she's yours. :)

Maria said...

What an amazing young woman. My cousin is a special education teacher & I can't stress enough how important early intervention is. That, combined with special ed classes & inclusion classes, give those with special needs such a boost in facing the challenges ahead. I see Nella's possibilities as limitless. Oh, the most important boost...support from a loving family who will be right beside her as she takes on the world. Sister's got that in spades!

Tristan Schlegel said...

Love loved loved this! Taking the "dis" away from disability. Perfect way to look at it.

Nella looks like Lainey in that last picture!

Ade said...

I work with young adults with moderate to severe disabilities in a job training program designed to prepare them for competitive employment. The young people I've worked with who have bonus chromosomes are some of the best workers I know. They are friendly, supportive, and care deeply about making other people happy...which makes employers VERY happy.

Nella is going to have a brilliant future because she has wonderful support and a family who believes in her potential. Go Hamptons! :)

nettie said...

I'm sure you hear this a lot, but truely, Nella is lucky to have you all for family. Your children are lucky to have her as a sister. I am a better person for reading and continuing to read her story. My girls and boy are learning to accept all and will continue to accept and celebrate all. Thank you, Kelle for sharing a piece of your life.

Kayla said...

Love this!! Every time I read what you write about Nella, I am SO happy for her- that she has a mom who will raise her to be strong, love herself, and find beauty in the world around her. You're doing amazing!!

Karen said...

Beautiful! Tears over here!! What an inspiration Carrie is!
Owen's struggles are our reality and how I wish I could take them away but he smiles thru life, belly laughs actually, and has no idea yet that he can't do what others do. He is still a copycat and that scares me but makes me so proud at the same time. I love watching him learn and can't wait to see where he will be in a few years. Thanks Kelle and Carrie!

avaellie said...
This comment has been removed by the author.
avaellie said...

Carrie~what a beautiful person inside and out you are! The world needs more 'teachers' like you!

Thank you Kelle for sharing Carrie's words with your readers.

Sportsmom0323 said...

I am sitting here reading this with goose bumps. I am currently going back to school for my M.Ed. in Special Education. I am learning so many things that I apply in my inclusion Kindergarten daily. However, all that knowledge was just trumped by 1 speech. Carrie is an amazing inspiration to anyone. I hope I can live up to her challenge!

Lms3989 said...

Kelle, I've been reading your blog for more than a year and in the past few months my mom has started as well. Your children are so beautiful, and your writing really seems to capture your spirit as well as Lainey's, Nella's and Dash's spirits. I love seeing the pictures of the kids, the impromptu beach parties you have and the way that you really make the most out of every day. I know you are incredibly busy, with three little ones among other things, but I would love to know that you saw this :) Reading your blog is the highlight of my day!

xo Lauren

Betsy Brock said...

How beautifully written. I enjoyed this post,....so inspiring and full of hope and determination. And that speech was wonderful...what a beautiful young lady inside and out!

I just watched my triplet boys with autism graduate from high school Saturday night. I'd be honored if you read my two posts about our experience.

http://myfivemen.blogspot.com/2013/05/graduation-ceremonies-accommodating.html

and here...

http://myfivemen.blogspot.com/2013/05/graduation-ceremony.html

It will probably always be a battle to get our kids what they need and deserve, but there is nothing like a mother's love and determination, is there? :)

hanguptheheels.com said...

That was beautiful.

Ashley said...

This made me cry. Thank you for sharing.

CountryMouse said...

What a beautiful speech ... I love the line "I took the dis away from disability and made it my ability ..."
My brother like Nella has that extra chromosome but it is not who he is, just as it is not who Nella is, just like any disability is not who someone is.
My mother and my family have fought every day to help him to the place he is at. He is smart he is nerdy, he is an IT/ technology wizz. He can read, he can write, he is stubborn, he has the memory of an elephant despite having less 'channels' to remember on and he graduates primary school (yr7)this year.
I am going to pass this blog post onto my Mum because I think she should read the speech featured. Sometimes it is hard on her, on us and reading this is a kind of confirmation that it is worth it.
And in answer to the question "what can Nella do?" I reply she can do anything. Yes it might be at a slower pace, yes there will be hardships but with her family there supporting her, fighting for her she can do ANYTHING.

Jacqueline mummy of 4 said...

Go Mumma Ali!!! You have many cheerleaders on the sidelines - even in a tiny town of Tasmania :)

Meg Arnold said...

from my heart- i can't wait to see the things Nella accomplishes and challenges that she will overcome. I wish all of Down Syndrome parents would have your attitude towards their children. Carrie's story is so touching and shows us all that Down Syndrome kids are just as special as any other child, we all have challenges and struggles at one point or another.

I love going on walks and sometime I see a father and daughter duo riding a tandem bike. The daughter, what it looks like, has Down Syndrome. It looks like the bike on the back is more of a big tricycle, probably for extra stability, but anyone can see that that father has a lot of love for his little girl. Seeing those two cruising around campus is so heart warming.

This blog is a breath of fresh air in the blogosphere. I absolutely love reading it and always leave greatful.

Peeper said...

What a powerful, eloquent speech. Good for her! And thanks to you and your family for exposing those of us who don't personally experience special needs individuals on a regular basis.

You know, my kids are still really young but as I start looking at schools, I wonder about how to expose them to special needs children. Is that a strange thing to wonder? I don't know, maybe it is.

It's not based on morbid curiosity, as some pessimists might believe. Rather, it seems that whatever you grow up with just becomes "normal" for you. The intention is that it would foster empathy, that my kids would defend these kids from those who tease, that just being around someone with special needs would feel very natural and typical. It's important to me that my kids are totally cool with people who are a different race than us. I want them to get mad when someone says two gay people shouldn't get married. And I want them to stand up for anyone who might have some special challenges most of us don't have.

I'm not sure that I even know how to say what I'm trying to say. I just don't want my daughter to be the asshole who teases Nella or someone like her. I'm trying to figure out how best to achieve that. I'm also hoping her brother makes it to his first birthday (my God, how she acts out!) and that our cats don't leap from the windows. It's just been a rough week...

Lindsay Marie said...

What a beautiful post Kelle, thank you for sharing this with us :)

Miggy said...

Don't mind me, just silently crying as I type on the computer...

Oh Kelle... I too look into the eyes of my beautiful almost 3 year old--a girl who exudes love and joy for everyone around her. I mean it practically drips off her it's so tangible--and I want to curl up in a little ball and cry and scream thinking about people who might and probably will make fun of her for being different. She doesn't have the same challenges Nella has, but they're real and at this point she's still mostly oblivious. As it should be. And I'm grateful she is...she is loved beyond measure and I know she feels that love. Sadly not all kids--disabled or not--can say that. Like Nella, she has a lot to be thankful for--which is awesome. They will struggle but I'm sure they will come out on top. Nella has one hell of a support system and I think our little nuggets got quite a fan club as well.

And Carrie...what a hero. So many wonderful accomplishments and what always impresses me about these souls who have some of the toughest roads to face is the complete lack of guile and bitterness. That is a gift an an example to all of us of how to truly live a successful life. Thanks for sharing her story. Love to you and the fam.

Alisha said...

So inspiring!
After years of being homeschooled due to chronic illness and medical complications, come September I will be joining my fellow senior class at public school. It is no doubt going to be a challange, not only academically but socially. I will have to work harder; harder to keep up, harder to make friends, harder to fit in, harder to do everyday things the rest of my class will take for granted.
But I am excited for my future, and to walk across that stage and recieve my diploma in a years time.
Stories like Carrie's, and yours with Nella, inspire me. I heard the words of a Columbine shooting survivor who says he refused to let that day be remembered as a tragedy and chose to make it a victory when he walked across the stage to get his diploma, graduating from that school only a few years later. And thats what i believe. I refuse to let any illness or disability hold me back, instead using my abilities and inspiring those i come in contact with. I refuse to let my life become just another tragedy, a life marked by special needs, and i am working to turn this story into one of victory. I imagine you feel the same about Nella.
You, and your beautiful daughter inspire me and when i get that diploma i will be getting it for Nella, for Carrie, and for everyone to whom the world has said "you can't". I will show them we can

Nannydeb said...

All I can say is WOW! My heart skipped several beats while reading this and my spirits are now sky high. As an Aunt of a child with DS I am more than familiar with the medical issues as well as the difficulties in dealing with those who out of fear or lack of education react negatively so to read this wonderful speech is so inspiring. My Vicki has so much to offer as does your Nella and I hope that one day they will take their ability and reach out to educate others and with their amazing hearts make this world a better place for all! Thank you so much for sharing this. It truly has made my day. I know the work these little ones go through each day is so much more than the "average" child but boy do they seem to be happy doing it, I try to remember to live like Vicki and find joy in everything. Thank you again x

April Vernon said...

Thank you. I really, really needed this today.

Raelyn said...

Kelle....
I haven't the time just yet to read this Blog post in its entirety. However. I noticed while scrolling down that you quoted Helen Keller!! I searched the Internet yesterday for some of her wisdom {I love, love, love Helen Keller!!} but somehow missed this one!! Thanks for sharing!! It may go on the side of my Blog!! ;-D
--Raelyn

6512 and growing said...

I hear your fears and I hear your hope and I hear your deep dedication to all your children. That's a lot to hold in your heart. Your heart must be very very big.

Jocelyn said...

LOVE!

Angelbabymummy said...

That's gorgeous, gorgeous girl, gorgeous speech and a gorgeous attitude.

suecinnj said...

Have no fear. Nella is going to win over everyone she meets and she will do fine. Your love will continue to nourish her as she grows up. You will be excited by her every accomplishment just as you are now and you will continue to be thrilled by her, no matter what age. You don’t need to feel bad or worry or feel sick…she will be happy and pleased with herself because you are pleased with her. Your love – which you think is so strong now - will just continue to grow and you will continue to delight in her. It is amazing.

Andrea Breeze said...

Thank you for sharing this beautiful post. Strong work mama. So many will gain comfort from this. Your love for your family leaps off the pages and your honesty is true and brave. I am a grateful audience.

And thank you for introducing us to Carrie. A inspiration for us all!

Love this post!

JOY WOODARD said...

Kelle,
Just wanted to let you know that your book and blog continue to heal and inspire me. I had never heard of your blog until about nine months ago, when a mother at our library's story time brought me your book to read. Like you, my second child was born with Down syndrome, and like you, we did not know until after he was born. Our story differs slightly there because my husband and I did not know after seeing him. We had one day of utter and complete joy before a doctor I had never seen before woke me up before 7:00 in the morning to tell me that our precious baby most likely had Down syndrome. I had spent the night in the hospital alone as my husband was with our oldest son at home, and words can not express how truly alone I felt in that moment. To have to relay the news to my husband was more upsetting than I care to remember. Needless to say, I cried buckets when I read your book. You wrote about things that I felt but was too afraid to tell anyone. Your book helped me to feel okay about what I was experiencing emotionally. I find myself in a completely different place than I was this time last year. I still have days when I worry and wonder 'what if,' but those days are greatly outnumbered by the days when I feel nothing but truly blessed to be the mother of my two beautiful boys. My husband and I just found out that we are expecting again, which brings about so many thoughts. Thoughts of hope and thoughts of worry, and again I know these thoughts are okay because of your words and advice. Thank you so much for starting your blog. You have healed so many hearts.
Much Love,
Joy

Tammie said...

JUST BEAUTIFUL & REMEMBER THERE IS ALWAYS HOPE. WHERE THERE IS NO HOPE THERE IS NO WAY. Thank you for sharing.

deb y said...

Thank you for sharing this inspiring post! I love your transparency! You allow those of us in like circumstances the freedom to know it is okay to fear...however you give us the courage to press on!

Barry and Rena said...

wow. love that speech. she must be a very special person. i hope nella can say the same things in a few years! youre giving her al the love and encouragement to get there.

Crystal said...

That's a great speech - thanks for sharing it, K! I'm going to pass it on to some of this year's graduates that I know. She is amazing - what a great cause to dedicate herself to. Nella is (and will continue to be) amazing like that :)

Mary said...

Beautiful post - tears here again as I realise that I have to take my "fortunate"-ness and use it to the best of my ability every day. Thank you for sharing that speech.

pakosta said...

so beautiful Kelle!
she writes better than most people that I know!
thanks for sharing! I Know Nella will grow up to do beautiful things, keep believing in her like you do!~
you make the world a better place!
xoxo
tara

Coffeemomma said...

I don't often comment here on the blog, but this post really moved me.
Since my son died, I have had a lot of people (directly or indirectly) mention that I don't have to worry now about all the things other parents of children with DS worry about. It is such an insensitive comment.... I don't even think I have to elaborate on why.
I also see a lot of talk around about how people who either have DS or parents of children with DS are putting a rosey light on a very dire situation. It's so discouraging to hear things like this. First, nothing in this life is guaranteed. Perfectly "normal" (typically developing) people suffer from depression, suicidal thoughts, sickness. There are no tests for these things. Accidents happen and life is changed in an instant. Children are born with their own personalities, struggles, triumphs....we cannot predict these things. We deal with them the best we can every day.
Yes, there's a laundry list of things that *can* occur...medical issues, behavioral issues, life issues...but these lists are there for ALL of us!!!!! It's not different just because we're parenting a child with a genetic difference.
Such comments are short sighted at best. The best part of the human condition has us always hoping, always looking forward, always looking up. We need to dwell in the now instead of the later, deal with the what is instead of the what could be (this goes for both the positive and the negative!!).
thanks, Kelle!!!

Ashley Elizabeth said...

Beautiful words!

Happiness is... said...

It takes someone with ability to educate all of us. Thank you Carrie.

We met the most wonderful 5 year old at Disney last week - swam with her family every night for 3 nights. And yes Taylor had DS, but more so than anything, the kid had confidence that I rarely see in children. Confidence swirled with determination. And I just loved that about her. The kid is going to blaze her own path.

cara said...

This post was particularly emotional for me. I guess because as I opened it to read, I was sitting here with my three year old sweet big brown eyed boy with that extra chromosome. I can relate to your words so much. We were playing pretend dr. together with his animals. I just love this boy to pieces. He blesses our family more than words can express. I cannot get enough of him. And I cannot imagine another person not feeling the same way about him. He is so innocent and precious. But I know they do, and I know that there are days where he could be hurt by unkind words or actions simply because he is different. I know things will be harder for him to learn as they already are. And this hit home today. But I do believe he can do anything with the Lord's Strength. Just this morning I was brushing his teeth, and he said,"Brush teeth." We were beyond thrilled!!!! He does not talk much, and this was not taken lightly!!!! He did it.

Love Carrie's speech!! What an inspiration she is. And she is my exact age, so that was kind of neat to think about what she was doing with her life at the same age as me. What a beautiful woman she is, and I LOVE how she is making a difference in the lives of others using her gifts to help. Thank you for sharing this!!

Amanda said...

What a beautiful tribute to our children who struggle more than others. Thank you for putting into words what we so often feel.

Kaitlin said...

Hi,

I just want you to know I love your story! I am working on my masters in special education and currently work in a school in a special education classroom. I love all children but I truly believe that people who have down syndrome are magical and a pleasure to be around. It is funny how people change our lives in ways we never imagined.

Sincerely,

Kaitlin

Bevin said...

That was so uplifting! Kelle thanks for creating such a positive place on the internet!

Hazel said...

We don't yet know if there will be ongoing obstacles for our girls as a result of their prematurity and the twin to twin transfusion. It will only become apparent if they miss developmental milestones. Sometimes I worry too much about the what ifs. Thank you for showing us how to accept Nella's differences so gracefully and still dream big for her. I hope I can be the same for Maggie and Elisabeth. Xxx

Phyl said...

Nella could not be more beautiful. She is glorious in everyway. Phyl

Sarah said...

Wow. This is really powerful. The work you are doing to dispel suspicion about disabilities is truly inspiring. Carrie is a rockstar.

Joy said...

Truly wonderful and the tears are falling. Thank you so much . . .
J x

Raelyn said...

Carrie....
This comment is for you. I do hope that you'll read it!! My youngest brother has Down Syndrome. The other evening, we were explaining to him {Again!!} what it is that makes him "different" {His word}, or special. And, matter-of-factly, with pride in my voice, I said this. "You were blessed with an extra chromosome!!". Yes, blessed. He is my best friend, a Kindred Spirit who, like myself, was born "different". You are such an inspiration. To me. ;-D
--Raelyn

Et tu, tutu? said...

Awe. I love the joy in her smile!

-Lindsey

Ruthy Taylor said...

When my daughter was born she was diagnosed with congenital hip dysplasia. Fortunately for her it is a fixable predicament--but for 12 weeks she was in a body harness...and the fear of surgeries and a body cast was looming in her future. Although she is progressing well, I couldn't help but think about her short term "disability" and it was devastating to me. It gave me a teeny tiny dose of what families go through with children with disabilities and this perspective has changed me. I've recently come across your blog and your beautiful instagram photos and love the beauty you capture in your children.

Trudy Callan said...

Please read these two links http://www.hslda.org/docs/news/2013/201305210.asp http://voices.yahoo.com/un-treaty-voids-parental-rights-special-needs-children-11566904.html?cat=25
and get the word out and call your senators before June 4th. It is about a UN Treaty that will void parental rights with children of disabilities. They are going to vote on June 4th.

It would be great if you could share this with your readers and ask them to call their senators as well as get the word out. Time is of the essence. Thank you.

I sent you an email with a little more information. Thank you.

Amanda J. said...

I loved this post! Carrie is truly inspiring!!!! She is so brave! And so beautiful. She shines! Thank you for sharing kelle. Hope things are well!

MadeByMarjo said...

Truly amazing. Thanks for sharing. I'm now telling my co-workers te come read this :-)
Love from The Netherlands

Jessica Watson said...

Such a great speech and what a perfectly full life she's leading. My oldest has autism and will be 18 (eek!) this summer and my hopes for her future have changed so much over the years but the one thing that remains is that I just want her to be happy.

FlowerLady Lorraine said...

This was beautiful!

So is Nella and the your love for her.

You are such a positive and inspirational woman.

Thank you and thanks to Carrie also.

FlowerLady

Alicia D said...

just beautiful.

oldenoughforfairytales.com said...

Your Helen Keller quote reminded me of another of my favorites by her. In 1932 she visited the Empire State Building and, afterwards, someone asked her what she was truly able to "see" - her response is an incredible testimony to her courage in overcoming obstacles and the power of imagination.

This is one of my favorite quotes from her letter but, the entirety is worth a read at the link below :).

"For imagination creates distances and horizons that reach to the end of the world. It is as easy for the mind to think in stars as in cobble-stones. Sightless Milton dreamed visions no one else could see. Radiant with an inward light, he send forth rays by which mankind beholds the realms of Paradise" - Helen Keller.

http://www.lettersofnote.com/2012/03/empire-state-building.html

Sheila said...

Could you lose your rights on June 4?

I just got this from a mother of a sweet DS baby....

http://sewingwithtrudy.blogspot.com/2013/05/urgent-i-need-your-helpregarding-un.html

jgarb1002 said...

Sitting in my office at work crying at how beautiful that speech was as well as the entire post!!! Puts things in a different perspective for everyone!

Lana said...

Just what I needed to read this morning! A beautiful speech and something I will pass on. Way to go, Carrie!

Ginny said...

I love that you neither found nor listed anything that was impossible for Nella. You only listed that things would be "harder" and I think you're right. For Nella, and every child, nothing is impossible.

Penny said...

this has to be the best graduation speech ever! When my cousin fostered a little girl a year old that had a list of diagnoses a mile long, she was told to "expect her to remain a vegetable for life. She will never walk, talk, speak, eat solids, etc. she will be on a feeding tube and oxygen the rest if her life." My cousin said she KNEW that Rachael was meant to be her daughter and she was willing to take that chance. Rachael is now 15 and the light of our lives. She is smart, funny, and a trip! She is very delayed and probably on a eight or nine year old level cognitively, but none of their dire predications came true. Rachael thrived and was rolling over and scooting within months of her mom bringing her home. A year later, the adoption was finalized. She was off oxygen and tasting food, eventually she was on solids and her feeding tube was removed. she was four before she walked on her own. She was talking, not blind, not deaf and learning soon after walking. She is an inspiration and a testimony to what God can do! And to a mother who loved her from day one, refused to accept limitations put on her by men, and patiently waited for God to work in rachael's life~ one step at a time, one day at a time. Everyone that meets rachael falls in love with her. She is our miracle girl! Like Carrie is and I'm sure Nella will be, too, an inspiration to all. :)

Elaina said...

Thank you for sharing. This brought tears to my eyes as I welled up with inspiration and love.

Jen said...

Beautiful, Kelle. She will is great, and will be always. Nella and you will continue to learn from each other as you grow. Love to you all.

MeenyMoe said...

Thank you for sharing this Kelle. In 1959 my sister, Mary Beth, was born with Down's Syndrome. She only lived 6 short months and died in my mother's loving arms on the way home from the doctor's office. I was not born until 1963, and I cannot tell you how many times I think about my sister wishing I could have known her. I wonder many times what she would of been like, how her future would of played out, how wonderful it would of been to have someone like her in my life - not only as my sister but as an inspiration as this young woman is today. I cried, not only for the strength and hope I read in her words, but for her fight. I imagine my own Mary Beth would of been so much like her too. Thank you for sharing this story. It truly made my day. I can only imagine what kind of fighter your Nella is going to be with the support system she has in you and the rest of the family. - Karen

Annie said...

Wow. Uplifting and inspirational speech. Tears. Thank you for sharing Carrie's speech. What an amazing women.

*Jess* said...

beautifully said.

Brandie said...

So beautiful and inspirational, thank you for sharing this!

Deanna Gohn said...

Beautiful post and I'm just in love with sweet Nella! What a beautiful little face!

Jessica said...

I ran across this quote the other day: "We make stories and to a large degree live out their plots. What our lives are like depends to a great extent on the script we consciously, more like unconsciously, have adopted. Carol Pearson"

Thank you for sharing, and for being, someone who consciously lives out a beautiful script.

The Holt's said...

This is beautiful and something I needed today. Thank you for posting!

nikkib said...

Beautiful, inspirational words from a beautiful woman. Thank you so much Carrie and Kelle for sharing!

fiwa said...

What a beautiful and inspiring story. Thank you for sharing it. Congratulations to Carrie, and best of luck!

Jackie Cho said...

Bravo, Carrie! Inspiring and real, and just perfect. Thanks for sharing this with us, Kelle. Thanks for sharing Nella with us, too.

Mary Lou Redmann said...

Thank you. I hope my sentiments are articulate. In reading this post, I didn't notice the differences but the similarities in raising our children. All children are such a blessing.

Naomi said...

Wow. This blew me away. Makes my heart so full to read this today on your blog. Thank you. Naomi

Kathleen w said...

Our 10th baby was born 4 weeks ago with Ds. We adore him so much and wouldn't change a thing about him. But as older parents, my husband is 43 and I'm 41, we are concerned for his future when we are gone. My girlfriend refered me to your blog because she said we are so much alike in the way we parent and the way we approached Ds. Reading this testimony has so encouraged my husband and I. Doctors make things seem so bleak. But we don't believe it is all inevitable. It is such a blessing to read of a positive outcome and a woman with such accomplishments and independence. It encourages us to push and fight for what we believe he can do someday.

Kat

jennyfreckles said...

What a moving speech and what an admirable young woman. Gradually the barriers are getting broken down, thanks to people like Carrie and her parents and you and your family. Thank you.

steph nelsen said...

love this post! thank you : )

Jeanie said...

Carrie, you are awesome! I'm so proud of you. Carrie's parents deserve kudos also. Thanks for sharing, Kelle.

Kellie said...

just WOW...

mistybown said...

That is awesome! I love seeing that we have come so far in such a short amount of time. And to show you why I hopped over here today, check this article out: http://www.ksl.com/?sid=25395935&nid=148&title=girl-with-down-syndrome-excited-to-be-first-time-cheerleader&fm=home_page&s_cid=featured-3
As a society, we continue to progress! Onward!

Traci P said...

GREAT speech! Don't worry Kelle. Nella will be fine. She'll be happy and do wonderful things with her life. You're so lucky to have such a beautiful daughter...2 beautiful daughters, and man that little Dash is handsome:))

Donna O. said...

Carrie is awesome...As are her parents, no doubt! With this in mind, I believe Nella's future will be bright and successful. So happy Carrie has accomplished so much and nice to see that she is such a happy young woman. Thanks for sharing.

Trudy Callan said...

Please ask your senators to oppose the UN Convention on the Rights of Persons with Disabilities on or before June 3rd. This treaty will give bureaucrats the power to decide what is in the best interests of children with disabilities, not the child's parents. What the UN has learned is patience - they came in strong with some of their early proposals and people rejected it because it scared them. So they've learned - introduce these things slowly and make it sound like it will be a benefit - or capitalize on a tragic event and say that it is for our protection etc - we happily give up our rights because we've been convinced it's in our best interest. We need to act FAST because the 4th is right around the corner. Take the time to learn about the UN and all of its agendas and proposals, for example, Agenda 21. It's scary, but we still have enough freedom to go through our government and stop this madness! If this passes, then the next step is then they try to pass the UN Rights of the Child, meaning all children, to void all parents rightsto even their typical children so that the UN is in complete control of all decisions made regarding our children. Call your senators now, on or before the 3rd, they vote on the 4th, and tell them to vote no, to oppose the UN Convention on the Rights of Person's With Disabilities. And post this on your Facebook wall. Copy and paste my words before you click share on your timeline. The number on Capitol Hill is 202-224-3121. And please share this on your blog as well right away while there's still time. You have a lot of readers. If they knew about this, I am sure they would want to call. If you post it right away, they will still have time to post on their media sites and urge others to call. Here is a link to read about it: http://voices.yahoo.com/un-treaty-voids-parental-rights-special-needs-children-11566904.html?cat=25 Thank you.

Lynn Richards said...

THIS is why we continue our struggles for our children. For every word this young lady has spoken. Wow. What an amazing person. Thanks so much for sharing this.
xo
lynn

sandy+bails said...

One thing truly stuck out to me in this post.. "Harder to make friends". Having a younger sister sharing the same thing (20 now). She has never had trouble making friends, gosh she has had more friends then I have!

I hope one day you come to Australia I know there is slot of people here who would love to share their stories and meet you.

Susan Martin said...

♥♥♥

magali said...

so touching! love your blog ...Greetings from switzerland xxx

Sheila said...

I always read your blog, but never respond, until today. My 11 y/o son Aidan was diagnosed with autism 9 years ago and we are now in the process of having him re-evaluated. Because he has improved tremendously we have been told that he is an "enigma" and obtaining an accuate diagnosis has been very difficult. Labels aside, what I know is that "Anything is possible"-Kevin Garnett. I stole that phrase years ago after the Celtic's won their 17th championship and KG shared that little nugget with us die hard fans. It's fits our kiddos to a tee, don't ya think?
I believe that the sky is the limit and try to instill this not only in Aidan, but all children whether they have a diagnosis or not.
Last week Aidan participated in a dance recital along with 30 other children in front of 175 people and he rocked the house. This Sunday, he will be in a theater performance in front of 600 people. Yes, "Anything is possible" Kelle, anything!

dressesandmesses said...

So inspiring, Carrie!! Thank you for allowing Kelle to share your story. You are an incredible woman!

Regine Karpel said...

Congratulations! Thanks for sharing!
www.rsrue.blogspot.com

Kimmy said...

Carrie is an amazing woman. She is a true inspiration. Great speech. Best Graduation speaker ever.

Kelli Kegley said...

I know you have been told this all before, but I can't help but share with you how much you have affected me. Your love for your children has made me a better mom. You truly do enjoy the small things right along with them and it makes me do so, too. You have opened my eyes to the absolute beauty that is within those with Down Syndrome and that, honestly, is something I will forever be grateful for. Your Nella is so lucky to have you fighting for her. You are one amazing momma!!

Kristi said...

I am so deeply touched by this that words fail me. Thank you for sharing Helen's beautiful quote, Carrie's inspiring message, and Nella's lovely picture.

Christie said...

I don't see anywhere to comment on the Blue Q post but I wanted to tell you I'm so glad you posted their behind the scenes. How awesome and empowering for so many! Thanks for sharing, Kelle!!! :)

Majki said...

That brought a tear to my eye, just beautiful and what an amazing inspiration!

Michelle Dessler said...

So sweet, thank you for sharing. I love Carrie.

feed that baby said...

Beautiful story...thanks for sharing

Matt Parrott said...

Kelle, I've never commented before but read your blog faithfully. I love your outlook on motherhood and having a daughter with different abilities. I thought you would like to see another young lady with DS and her bright outlook on life. Here's the link: http://www.ksl.com/index.php?sid=25395935&nid=148&title=girl-with-down-syndrome-excited-to-be-first-time-cheerleader

Beth Burbank said...

Thank you so much for all that you are sharing. It is so inspiring.

Valene said...

What a beautiful speech!! Thank you again Kelle for making me more aware of the DS community and sharing your beautiful children with us!!!

dodgingacorns said...

Carrie's speech is amazing, she's an inspiration to all of us. Thank you for sharing it with us. And look at Nella in that hat - goodness she's too damn cute. My daughter is also 3, and it's an incredible age - on the edge of so much. While Nella's journey will be more challenging, with you as her mama and so many loving people around her, I know she will be an incredible inspiration to so many.

addiesmommy said...

Top 5 favorite of your posts...! Awesome people doing awesome things..

Emma R said...

Loved it Kelle! What an awesome story Carrie, thank you for sharing it with us. I actually might read it to my students at school, I think your perspective is very powerful and has the ability to seriously challenge preconceived stereotypes.

Brandi Powell said...

A beautiful story Carrie. Thank you sharing. <3

Debby said...

Carrie is an amazing woman. She's going to have some company in that category though......our Nella will be just like her. Hope you don't care I called her "our"......I just love Nella. Love you and your family but Nella has stolen my heart.

Me said...

GO CARRIE!!!!

J said...

Dear, sweet, beautiful Carrie...your story and speech left me in tears today - the kind of happy tears that connect you with others through inspiration. You remind me to start my day bravely and courageously and not give up on the dreams I'm pursuing. Thank you for YOU!

Jessa
http://livingfromthisdayforward.blogspot.com

Sharon V said...

Carrie is a beautiful lady inside and out. Lovely speech!!Thank you for sharing it.

Natalie said...

*sigh*
I'm so sorry that Nella's life won't be easy. She will struggle in ways that I can't even begin to understand.
But I just know, I just *know*, that her life will be MORE. That girl of yours is meant for something that is bigger than know. She is changing the world. As are you.

Mark, Wendy, Dale and Rose said...

An incredible inspiration!