Friday, March 23, 2012

To Listen.

It's been over two years now that this blog has had a readership extending beyond family, friends and the handful of moms who came to read ramblings of a mama in love with holidays, cute shoes and a blond little girl who completed her world. It was an interesting transition at first--putting myself out there knowing that my dad wasn't the only one reading or commenting. Sometimes it's been challenging. Mostly, it's been inspiring.

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I follow the golden rule of "To Thine Own Self be True" and I do my very best to write from the heart, regardless of what people think. "Be honest, yet open," I tell myself, "Be vulnerable yet respectful." From the day I wrote Nella's birth story, I knew that some of the things I was writing about might be hard for people to understand--that maybe I would be judged, that maybe I would be misunderstood. Writing openly about both my vulnerabilities and joys in life as well as a handful of topics in between has been a good experience for me. I've become more confident both as a thinker and a writer and more compassionate toward myself and my own personal journey as well as that of others.

I learned very early after Nella was born that the community of parents who have a child who is differently abled is amazing. Through the challenges they've faced, they have acquired strength, compassion and remarkably impressive motivation to advocate for their children. I also learned that there is a broad range of opinions, some held quietly between parents who advocate privately for their children and some expressed openly and ardently on forums, blogs, at conventions and support groups, in books and e-mails and message boards. Our common ground? We love our children. We want the very best for them. We hope they will be happy and accepted.

Today I received two e-mails, both of them kindly written and well articulated. They drew my attention to the fact that my explanation to Brett that adults with Down syndrome generally have a "child-like mentality" might not be the best choice of words. That the world needs to know that adults with Down syndrome are accomplishing many things, holding great jobs, going to college.

And they're right. The kindness and understanding in which they expressed it made me really listen.

While the moment Brett and I shared was special, and my use of "child-like" referred to something I admire in the individuals with Down syndrome I've met--an enviable enthusiasm for life, I am grateful for the opportunity to learn from others and to refine my vocabulary to advocate as sensitively and effectively as I can. It is important to me to join the many others who are working to change the stereotypes and prejudices regarding Down syndrome, and the future of our children depends on it.

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Finding my own voice and form of advocacy, especially using this blog, has been challenging. Nella is two years old. We are learning. Every day.

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Learning feels very good to me, and I am comfortable talking about how we are learning. But the best kind of learning involves making mistakes. And today, I learned the importance of listening.

"Listening is the oldest and perhaps the most powerful tool of healing.
It is often through the quality of our listening and not the wisdom of
our words that we are able to affect the most profound changes in
the people around us. When we listen, we offer with our attention
an opportunity for wholeness. Our listening creates sanctuary for
the homeless parts within the other person. That which has been denied,
unloved, devalued by themselves and others. That which is hidden.
In this culture the soul and the heart too often go homeless.
Listening creates a holy silence. When you listen generously to people,
they can hear the truth in themselves, often for the first time. And in
the silence of listening, you can know yourself in everyone. Eventually
you may be able to hear, in everyone and beyond everyone,
the unseen singing softly to itself and to you."
~Rachel Naomi Remen

It is an honor to give readers a window into life with special needs. That window looks different for every family, and ours does not represent all of them. What I do hope you always see is that, no matter what our children look like or what they are able to do, they deserve to be valued and celebrated. Life deserves to be valued and celebrated, and I am grateful this blog is a place where I can share that. Celebrating life--common ground we all share.

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I have very big dreams for both Lainey and Nella. I have very big dreams for myself. And as I move forward in sharing a piece of our life on this blog, please know...I am listening.

Thank you to the two kind mamas who modeled true advocacy so beautifully in their e-mails today--to kindly guide and teach.

*****

Scentsy Giveaway winner and Friday Phone Dump will be in Monday's post. Have a fantastic weekend!

189 comments:

ShaunaQ said...

I think you sharing your experiences is a gift to us. We, as readers, can see you are learning as you go and we're learning with you.

You are very gracious in the reception of those emails, however, you need not be scolded or schooled. You LIVE this and you tell your story through YOUR eyes. That is the beauty of this blog.

melissa said...

Am I the first for first time ever -- kind of fun, now to go back and read!!

Fay said...

I love reading your blog and enjoy the experiences you share. I agree we are all learning on this journey we are on and it is okay to make mistakes and do things others might not. No one is perfect. You are inspiring. Thanks for be so open and sharing your story to the world!

Ann said...

I understood your original intention but I also understood how it could be misinterpreted. I've never understood the criticism though.
I think this post was thoughtful and gracious. Thank you for sharing.

Lisa said...

I admire your open-mindedness and willingness to listen to someone respectfully tell you that they have a different view. There are a scary amount of people who aren't able to do that. Good for you.

And, the story of your conversation with Brett still melts my heart. :)

Mrs Thrifty said...

Thank you so much for your inspiring words and your honesty. Your blog is such a blessing. I only found you recently, following the birth of my beautiful niece last October who has Downs and I was trawling the web for information. You have an amazing family and the love shines through your photographs. Although my main job is teaching, I am also a trained counsellor and everything you write about listening is so true. Thank you too for using the term 'differently abled'. I lost my hearing as an adult through Meniere's Disease and I still teach languages in a high school accompanied my a phenomenal hearing dog for the deaf (you can see her on my blog). I see part of my remit with young people as teaching about difference and it is something to be celebrated. So, thank you again - every time I read your blog I laugh and cry - you are a blessing xx

Kenzie Rice said...

that last picture is to die for.. i wish nella and lily could meet someday! i'm sure they would be the best of friends.

beautiful post.

xox, kenzie

Janet said...

All of us are on a journey. Thank you for sharing yours in such an eloquent and inspiring way. Listening, learning, loving; you have portrayed these virtues for the last couple of years that I have been reading. Thank you.

Jodi said...

It is so gracious of you to respond to emails in response to your last post. I read your blog entry and didn't think anything of your "childlike" comment, until I read elsewhere that other people debating it.
I appreciate your response but also feel that this is your voice and your moment. This blog is about your life and not DS and DS alone. You don't need to feel you have to edit yourself.
But I appreciate that you want to help breakdown stereotypes for people with DS. You can't be everything to everyone.. but I think you are doing a great job at living life and telling your story

Michelle@gigglegumgirls said...

I think you are doing an amazing job. You spin a lot of plates, and I am inspired daily as I watch you balance each one, careful not to let them fall. You are gracious, creative, humble, inspiring, and "human". One of my favorite things about individuals with down syndrome is their ability to live life through a child's eyes...happy, giggly, full of wonder. I think Brett was right to think it was awesome. I do.

Jennie said...

Kelle, you have done a great job of sharing your spirit with all of us readers. I love your passion for life.
I appreciate, also, that you're listening. You're in a tough spot, really. You're "new" to the disability scene. And all of the advocates (self- or parents) have varying opinions of how things should be said. And I think the concern that has been expressed to you by some other advocates comes from a place of knowing that YOURS is the blog that is probably most often read by people outside the community. YOURS is the blog that readers will use as a reference for how things should be said. So that is going to garnish a higher level of critique than, for example, my (highly neglected) infrequently read blog.

Thank you for explaining what you meant by "child-like". I had a feeling that was your view of it (much better than using the word "childish," which is a character trait I find more often in individuals who do NOT have an intellectual disability, LOL). I appreciate the individuals who asked for greater clarification and expressed a concern about stereotypes. I think the biggest concern is just that there's a stereotype out there that individuals with Down syndrome don't really grow up and experience life as a "real adult." So anytime the word "child" is brought into a discussion, it brings about some sensitive responses.
Keep on learning... just like we all are!

Jannice said...

I'm sure the readers who sent the emails were glad to see your further explanation of your words...I however, think you articulate your words beautifully.
I love reading your blog - because its so honest and relatable. It must be hard though to leave yourself open to criticism - or misunderstandings. I don't have a child with DS - but I can say that I had some pretty trying times after my babies were first born and would probably be criticized for some of my thoughts! Being a mama is hard work!!
Have a great weekend!!

dandelion daydream said...

I thought yours and brett's conversation was beautiful and I understood immediately what you meant about a childlike mentality - not that nella or another person with Down Syndrome is less able but rather their perspective on life..... and it is a very special and precious thing. Or 'awesome' as brett put it.

melissa said...

Oh wow, this should open up great dialog on here, and you know what, I LOVE that you got 2 kind, well-articulated emails...we tend to listen much better when someone doesn't go about something they are passionate about in a rude manner. None of us are experts on everything. Some of us who don't experience down syndrome in our lives daily get to know these things through people like you or others, etc. I'm sure many have wondered what Brett wanted to know and you shared that in the best way you knew. It was an honest answer from you and I think those people who emailed you know that. I would love to know 'their' take (if they would want it published; if not, I respect that) merely for the fact of learning more...especially from those who have experienced, which is all individual. I can assure you none of us intend to stick 'our feet in our mouth'. I am certainly concerned if I am ever understanding or compassionate enough.
Love ya all the way from Tejas,
Melissa
PS - I forgot to tell you awhile back I loved the photo of Nella typing away on her toy lap-top.... preciousssssss, smart angel. My kids just bang their toys around at that age.

April said...

I've been quietly reading your blog for over a year now, and for the first time I felt absolutely compelled to leave a comment.

This post, this one right here, is one of the bravest and most tender things I have witnessed in a long time. Years and recent experiences have felt me feeling cynical about people's ability to listen and learn; to see beyond their obscured view. But you have restored my faith and I thank you for that!

I love that you live with your arms wide open... don't stop. ~April

Patti said...

I'm so glad you clarified. I think it's difficult to strike a balance between realistic expectations for our kids, and expecting-not-accepting. We are all just learning. We want so much for our kids, and I personally am setting my expectations high for Lily. I've watched videos of self advocates (adults with Ds) and while they obviously have challenges, they were not at all childlike. I think we need to be careful not to feed into that stereotypical mentality about our kids never growing up ..but at the same time, if they do turn out as being that way as adults, we are just as accepting of where they're at. Which is what you were saying you would do. I do think that because of inclusion and new therapies and just a general shift in our culture, we're going to see much more for our kids with Ds than previous generations have. I think there's more potential because of research as well, and I have high hopes. But even if those hopes don't pan out...I agree with Brett that our future is going to be awesome :)

Erin said...

you are so amazing, strong, confident, and humble. admiring this post.

SuperMilf said...

Such a beautiful post, Love that quote!!
And LOVE Nella's bathing suit!!

heather said...

I knew your intent and I am excited to have a child who will always be excited on Christmas Eve for the arrival of Santa Claus. I know there was a lot of talk in the Ds community when a book was being pushed “I live with Peter Pan”. I understood the concern and the hurt of that stereotype. The author just wanted something to help her children better understand their sibling. She never meant to set back the progress of advocates for acceptance and understanding of individuals with Down syndrome. Ironically, Morgan was Peter Pan for Halloween when she was 7 and I never once thought of the comparison of Peter Pan and Down syndrome. It was the character she wanted to be and all of the rest were taken up by other family members. I love you and what you are doing for all of us Kelle. There is a lot of politically correctness in the world of disabilities. Sometimes it’s hard to keep up. You have done more for Down syndrome acceptance and awareness than anyone I have encountered in my 9 years in this journey. Kudos to you, Kelle. You are doing great, HUGE, things for the Ds community and you’re only two years in.

xoxo

Emma Kay said...

I'm so glad to hear the emails were respectful. i knew exactly what you meant as well, because anyone who has followed your blog knows how much you have changed the stereotype that people, young and old, with DS can't accomplish and realise their dreams. You personally have introduced us to many young adults with DS who are accomplishing great things. You are amazing. You're whole family is wonderful and I strive to be more like you everyday so I can hopefully see my family start to be a bit happier. Please keep being amazing you because even us who aren't touched with DS need your inspiration and perspective.

Lesley said...

I, like you, thought "child-like" was a beautiful description. But then, perhaps we think differently of children than others do. The moment you described with Brett brought tears to my eyes (in a good way) and I think it just showed your mama and papa hearts for what they are...open, accepting and luuuuuuuving!
No matter how well meaning the commenters were, they need to remember that everyone is on their own journey of understanding and they may not be in the same place...and let me make this clear, this does NOT mean that they are further along in their understanding. They are just in a different place. I enjoy coming to YOUR place. I look forward to every post. Let us all be child-like for as long as we can...let us be old and grey and still be child like. I know what you meant and I still think it was beautiful.

Rocksee said...

I love that you are brave enough to open yourself to others who may have a different thought process about certain issues.. That takes a special person to take those corrections and guidance with dignity and grace.

You always show us how to go with the ebb and flow of life and to be open to learning!

Lainey and Nella are two very very lucky little chicks. I'm excited for there futures just knowing they have such an amazing momma as an example..

My Secret Rooms said...

That's so true, so very true.
And everybody wants to be heard and listened to.
As I leader I see it over and over again and I try very hard to do it and be very present doing it.

Thanks for beautiful words, Kelle.
You really make my day!
<3

MissValerie said...

tutto così meraviglioso.. un forte abbraccio a tutti voi!

Team Lando said...

Thanks for clarifying and taking the time to go deeper. And more than that, thank you for being willing to learn this "special needs" thing out in front of thousands of people. You're doing a great job, and thank you for allowing us to witness the ups and downs with you!

Liz said...

you are a gift for each of us!
thank you

medina family said...

I learn from you all the time. You are an inspiration.

Kim said...

Kellie, I don't have Downs Syndrome and I have been described as having a "child like" honesty. I am very honoured to be described like that. Child like is the best gift. Its true and clear. Although some people cant deal with true and clear. Thats their problem. Loving your bloggin. Loving your family.

Holly said...

I have learned so much from you. Keep being open and honest.

FlowerLady said...

This was BEAUTIFUL! Your posts always touch my heart and soul.

Thank you ~ FlowerLady

Beth said...

the greatest quote i've ever been given in my life is .... " if you know better, you will do better " so true. thank you for your writing & sharing your life & story. big hugs!! enjoy your weekend. we have rain here in Virginia. (:

Rik said...

I am sure I step into the protective parent role whenever I hear a challenging comment or what I might see as a critical word. I don't apologize for that role. I wouldn't have it any other way. My parents always offered me that same shield. But words and images are powerful and if this one brought anything less that our highest hopes for our children, I commend Kelle on wanting to sharpen the image. When I had read it, it brought back echoes of a speech Sharon Stone had given at an NDSS luncheon I was honored to attend with Kelle. There she spoke of "special needs" and how she had so many more special needs than the vibrant young man with Down syndrome that had become her lifelong friend and mentor on the journey. She shared some of her superficial special needs that he did not seem to have and focused on his pure character and robust embrace of all that is good in life. She spoke of his sense of wonder and I think that is what I strive to hold on to from my childhood. That wonder calls us to great things. We are raising the ceiling on our hopes and expectations for our children. We want to keep it positioned high enough so there is always a sense of reaching yet near enough to keep fueling that reach with attainment. We are learning the power of early intervention and the energy of expecting much. Early on our journey, dear friends would attempt to bring me comfort with words that disturbed me more...like "Oh, we had "one" in our school and he was so happy and funny--everyone loved him and he always made us laugh." Those words hurt more than helped. I didn't want a clown, I wanted a child with the full spectrum of thoughts and feelings that enable that child to navigate life and make and take their place in the family of life. But I knew there would be opportunities to teach later and so I smiled, thanked them and invited them to share our journey. And a journey it is...and we are listening and learning. I too, and maybe even more with every birthday I celebrate, would be honored if in some positive way, I can still exhibit the abandoned wonder of the child I once was. Good, gracious and growing post, Kelle. I never cease being proud of you. You never asked for this voice and you daily graciously accept the burden of offering it for so many.

Your proud Poppa

Valerie Hartman said...

You are clearly on a path of excellence and grace. Thank you for sharing that journey with me.

camille said...

Kelle, please tell us where you got Nella's adorable swimsuit from!! Thanks...

melissamaren said...

kelle, I'm so glad you wrote this post. my girl (who has DS) is nearly 2 so I'm in much the same place you are in this journey. I've felt a bit unsettled since I read the story you and Brett shared. So glad you've been given some guidance and that the more experienced mamas like ourselves can tell us that "child-like" isn't the perfect description. :)

Psalm45Girl said...

<>

Heather speaks the truth.

I am a speech/language pathologist, in my 27th year of serving those with communication challenges. I cannot adequately convey how much your blog, your words, your life, your TRUTH blesses me. Inspirational.

I would never assume you meant anything other than the absolute best, in any descriptor you might use to describe your journey. It is simply not in you to belittle or undermine a constant, forward progression of advocacy for Nella and all individuals with DS.

"Child-like" is a beautiful thing to witness. It is magic. It is a way of living that is to be admired and desired (in the words of Jesus), even for adults.

Carry on, Kelle. Your love SHINES.

Ashley said...

Funny, because the exact words that some were concerned about, were the words I copied and pasted on my wall (FB). We all use different words, all with good intentions and I'm glad you chose them, because they resonated with me positively.

Southern Gal said...

You are so gracious.

Love that last photo. Love it.

thetaooftulips said...

I want to join the others in publicly thanking you for listening and responding. I know your heart is true and I know the journey into the world of disability is filled with uncertainty. We all express our vulnerabilities and question our words, our choices. and you are right- we all want the same for love and acceptance for our whole family. What that looks like is just as diverse as we individually are. I thought you probably meant child-like in a sense of wonder, but I can't help but fight against that stereotype for my dear Quail as well. Enthusiasm for life and may none of lose our sense of wonder, they are so important in happiness. Dear Quail is so very smart though. We all are, multiple intelligences- sometimes it is just hard for outsiders to see. Thank you for the public clarification. It speaks volumes to you, your love, your journey and your character.

The Quail's momma

Kelly B said...

I am glad you received two gracious and thoughtful emails. I hope that was the only kind you received. Your moment with Brett made me cry, right in the middle of Starbucks. I'm not a mother of a child with Down Syndrome, but I am a mother, a lover of children, families, life. If I want medical or technical or sociological or cultural or political descriptions of life with Down Syndrome, I don't come to your blog. I come to it for a story of a family, pictures of a colorful life lived near the beach, and the smiles of 2 little girls nearly the age of mine. Your grace in this post shines, but to me, it does in every post. Xo, friend I haven't met yet.

Shannon said...

I am glad you touched on this because I must admit, those words made me cringe. There is some truth in them, but is also is a lie that I want people to see. That not everyone with down syndrome doesnt mature past the age of 8 anymore. You are an amazing advocate, Kelle, and stereotypes are out there because they are real for some people- as parents, we would be doing a disservice to ourselves to deny the possiblity our child might fall into certain stereotypes. Just as we would be doing a disservice to not at that same time believe that our kids will reach the moon. On another note, I read chapter one yesterday :) counting down the days for you :)

poeticchronicles said...

'Celebrating life: common ground we all share'. I cannot agree better, and when I see this picture of you holding Nella and smiling, I see myself and my own kids. What just strikes me is that, even if Nella has special needs, she is so similar to my own daughters, and you are so similar to me! I see life celebrated, happiness shared, love first. I see great hopes and great dreams, and a great family life happening now and fully enjoyed :)

Cathleen said...

My daughter is 5 now - not too much past sweet Nella - but I feel like with each year - or each day, really - I am more aware of her abilities, her potential, of all that she can and will accomplish. At the beginning I felt I needed to knock the dreams down a little bit, but now, while I choose not to define what exactly her capabilities will be as a grown up, I am so blown away by what she can do now that I don't think anything in her future will surprise me, big or small. You guys have the right attitude to just let her show you who she can be, because she will be amazing, as she already is.

Abby said...

The only way you can be sure you say everything perfectly perfectly all the time is to never say anything at all. Soo glad you didn't take that route!

I join with the others who don't have negative feelings about anything you said, but am willing to learn through your experience. And I join with your (justifiably) proud Dad who reminded you that you didn't ask for this role but handle it so well.

Great big blessings to you and your beautiful family!

Michelle Kendrick Hartney said...

You are a really amazing person. Thank you for being so gracious and open.

Heather said...

Bravo Kelle, you set a stunning example of graciousness and humility. While I do not have a child with DS, I am moved very deeply by your journey. Learning through you is an honor. Thank You.

Marie said...

You are inspiring. Just one example - today, my four year old is having a cowboy birthday party, complete with a pvc pipe and cardboard barn, inspired by the party you threw for Lainey. My son thanks you for encouraging his not-so-crafty mother to try a little harder. More importantly, as a mom of a child with some delays, it's inspiring to learn from how you embrace differences. I love reading your blog.

Laura Bedingfield Herakovich said...

oh for us all to grow up and still have a child-like mentality, a child-like innocence, a child-like trust. then we'd all not just believe in unicorns, but we'd be able to see them, too. bless you, kelle, for putting yourself out there. :)

laura
http://www.jtandtheob.com

Brooke said...

As I read the first chapter of your book yesterday, I could see the tremendous growth you've experienced in the last couple of years. As I read your blog each week, I admire you for the incredible mother you are and I'm inspired to be better. I recently realized that you have grown bit by bit, day by day and the same goes for me. I am certainly not the same mother I was when my daughter was born and I won't be the same tomorrow, next month or in 20 years. Thank you for opening my eyes to see that I have changed and grown and all I needed to do was look back and see how far I have come!

Deanna said...

I'm so glad that you posted this. I have to admit that I was very thrown at your description of a "child-like mentality". If that's what my daughter ends up having as an adult- I am fine with that, but I'm certainly not expecting it any more than I'm expecting her to keep her fine blonde hair or love for Signing Time. She will change and grow and become the beautiful adult that she was intended to be, and I'll be the one yelling on the sidelines for her to keep proving the world wrong in what they initially expected from her.
This is probably my favorite post that you have ever written. Fixing the impressions left by one small description in such an eloquent way is truly inspiring. Thank you for standing up in a new way for our kids.

Jojo said...

Although I understand that people who advocate for our children are trying to tear down stereotypes,I have also accepted reality. My 29 year old daughter is a bright, beautiful woman who goes to work everyday,attends recreational events regularly and has quite a full life. However, her main concern at the moment is how long is it until the Easter bunny arrives.Her child like mentality, stereotypes or not, is the one thing I cherish and adore.

TP said...

sweet post. My only knowledge of DS is from reading your blog. I would love to know what better terms those mommas would use, just to be more educated. So glad those mommas were sweet, I can't imagine having an audience to my thoughts--I'm sure I'd get in trouble all the time for something.

Jocelyn said...

I cannot say enough how much I love and appreciate your honesty. It is raw and real. Thank-you

Ingrid Wilson said...

Dear Kelle,
After I read your last beautiful post I braced myself, knowing that you would likely receive correction or criticism. I felt like your dad- protective and ready to defend you. I glanced at the other comments from Wednesday and I was so glad that they were sweet and supportive and expressed the emotion that you evoked in your readers. At first I was disappointed to read today that you received the two emails, though I am glad that they were gentle. I hope that their intent was to encourage you about Nella's potential instead of correct. What I have noticed since becoming a mother to Mylie, who was blessed with the same genetic composition as Nella ;), is that we tend to be under a bit more scrutiny, as if we are in a fish bowl and others on the outside are watching our every move to see if we are going to do something either miraculous or politically incorrect. The point that we strive to make as mothers of these wonderful children is that they are more alike than different. They are people with thoughts and feelings, dreams and desires, loves and dislikes, etc. just like everyone else. We want others to see beyond the difference in their almond eyes, short fingers, and varying cognitive abilities and see them as human, just like everyone else. The thing is- we really want and need the same thing for ourselves as parents. When it comes down to the basics, parenting a child with varying exceptionalities is no different than parenting a "typically developing" child. From the moment they are conceived we start to worry and protect them with our body and our heart. We have hopes and desires for our children though we know that we really have no way of planning or predicting who our children will grow to become. But we think into the future anyway. We wonder if they will be smart and successful, if they will be driven and productive, if they will they will find happiness no matter what it is they seek in life. In a way, we do this to prepare ourselves as parents for any of the possibilities so that we can separate ourselves from our children- so we can separate our hopes and desires from their hopes and desires so that we don't trample their future because of our narrow-minded vision. I prepare myself that Mylie might be our constant companion in life, that we might have a child to love well into our retirement. At the same time, I prepare myself for the opposite. Knowing Mylie, she will marry because she is already in love at the age of nine. :) She will likely do way more than I can even imagine for her, as will all three of her brothers who don't have special labels or diagnoses. The point is, we are all parents trying to navigate this crazy thing called parenthood and we all have the same struggles and desires. The only guarantee that we have is that we will NOT do it perfectly. We will do and say the "wrong" thing sometimes and we will be subjected to judgement and criticism from others, whether they share their thoughts with us or not (yes, lady at the grocery store- I do have my hands full). And at the same time that we have similar struggles and responsibilities, we all have totally unique situations made up of so many varying factors that lead us each to do (and say) things in our own ways and our intentions are likely always the best we could have. The key ingredient that so often is missing in all of this is GRACE. We need to have grace for each other and grace for our children. When someone says something that doesn't quite settle the right way with our spirit we need to give them GRACE. Kelle, this is YOUR walk that you so openly share with the world. I hope that you protect your freedom to figure it out for yourself. (had to cut it short...too long. ;)

Francesca said...

The more I read your blog the more I think you are a lucky person. I think there are many family who could not be able to rise a kid with DS as you are doing because they do not have the possibility to do it from the economic point of view. I think that your Nella is lucky to be your kid.

Ashley Gibson said...

so beautifully said. glad to be learning along with you...and it's good to know I'm not the only one who makes little mistakes :)

Rik said...

I am sure readers have no idea the delicate walk required of one who tells her still unfolding story. Some have been critical of a perceived "denial" of the reality of Ds. Others, of seeing in it a challenge at all. And there is another broad audience who, for the first time, sees Ds as it is woven through the bright threads of a family's tapestry. Keep telling your story, Kelle. Tell it truthfully as you live it. Correct it as we all do when enlightened by life's experiences and the counsel of loving friends. Tell a story all will listen to, and not just a few. Tell a story that opens hearts wider than they were before. I love your story because I love the "stars" in it!

Poppa

ashley said...

you were very gracious about those emails, kelle. beautifully written.

Boo's Mom said...

What a lovely, gracious post. Life is not easy and sharing one's life publicly is even harder -- no matter the rewards.

Erin Bettis said...

Thank you for opening up this part of your life to us. I have learned a lot. Also, Remen's quote is inspiring. I'll be sharing it with my sister-in-law who is struggling with a drug addiction. She is being shut out by close members of the family and I know that he will appreciate this quote. Kelle, please know that you are inspiring people from all avenues of life - not just in the DS community. Thank you!

Anne Lightner said...

i thought your conversation with Brett was beautiful. It brought me to tears. Thank you so much for sharing such intimate thoughts because like you I am still learning too.

Britt Emmons Ricardo said...

I'm sorry to hear you received negative feedback, even if it was done respectfully and with the best intentions. If you're anything like me, it must have hurt your feelings. While your post was beautiful, it frustrated me because I'm fiercely protective of the fact that in motherhood, we try our best. We aren't always perfect, we don't always say the right things, we sometimes wish we had a do over. But the bottom line is that you are an exceptional mother. You love your family with everything you are and if someone can take one private conversation that you so generously shared with the world and misinterpret it, then it's too bad. I always try to think about what others say by asking myself, what is their intention? Were you intentionally trying to state that you have limits on what you believe Nella will accomplish as she gets older? Of course not! Are you going to be her biggest fan, helping pave the way for a bright, beautiful little girl to grow into an exceptional adult? Of course! That's what we all do for our children! I can appreciate that there is a lot of politically correctness and I can't even imagine how challenging it must to be write openly and honestly on your blog and not have someone, somewhere take offense. Not everyone will agree with what you say, or believe that it's possible to live such a happy, beautiful life, but it is your life and you so generously share it with those of us to come back time and time again for more. I hope the critique will help you in the ways that you shared, but not dampen your ability to be open and honest with how life is for you and your family day to day. I love what your father wrote. You certainly didn't ask for this voice and in my opinion, you are doing a damn fine job. Hope you and your beautiful family can enjoy some special family time this weekend.

Suzy Stark said...

You are one of earth's angels, and that is why God chose you to parent Lainey and Nella. He knows you, and he is using you. Thank you for listening to HIM, and followin your call to do what you do.

Kimmy said...

Thank you for writing this blog and putting yourself out there. I know it must be very hard at times and I really appreciate it. I love the way you said that Aduts with Down Syndrome have an enviable enthusiasm for life. That is well said. Thanks!!

Crystal said...

You know what, this post hit home for me more than any of your others. I am a strong woman and have been told I give off an impression of having it all together. But secretly I am often terrified of others criticizing me, because I want to explain to them, don't you know I had the best of intentions? I've always admired your ability to be comfortable in your own skin and to take in the bad with the good without a personal inner freakout. I really need to learn to do that, too.

janetteplatter said...

I started following your blog around the beginning of this year and I have always been so inspired by the grace and optimism you bring to your life, this blog, and naturally, those who read it.

Like others have said, I didn't think twice about you saying "childlike" and I think we all could learn a little about what it means to live, play, think, and have faith like a child. What a beautiful gift your sweet Nella (and Lainey, of course) is to your family, and by extension, to us. Thank you for sharing your journey. I am constantly inspired by you.

Janette Platter

pakosta said...

I didn't take offense at all to what you had written, I think it's one of the beautiful qualities of downs syndrome that they never lose the ability to remain childlike in their nature/loving/playfulness/zest for life kind of way....but then again I don't have a child with DS either. I do admire how you are able to learn from others, accept feedback/criticism and admit faults, that's truly unique in a person! I love that about you! and I am glad you were sent loving emails about it!
hugs!
tara

The Marrenator said...

“Life is a succession of lessons which must be lived to be understood.”- Helen Keller. Thank you Kelle for sharing your lessons and putting yourself out there. Always remember that this blog is your lens and your rawness and honesty is what keeps us coming back for our own lessons. You have a gift that I feel priveledged to witness and learn from. thank you for sharing.

KWQR said...

Well said my friend... you are one classy lady!
Don't know how you do it... living this adventure out loud, in front of such a diverse & growing audience.
But you are doing it beautifully!
xo
Kate

Kmarie said...

This was lovely. You are doing your best and you are so right- no one is perfect...those who want us to be have their own struggles. I know that all Down syndrome children have the possibility to go to College or live on their own but the parents who EXPECT that are also not right. It has to be what all parents should do- base it day by day on the child's personality. Look forward with hope to the future no matter what, have some realistic concerns and some wonderful dreams...
I think you have all that. To say she may be childlike is beautiful. My son has ASpergers ( I do too) and he most likely will have the childlike aura I possess at times...I think it's a beautiful gift to the world.

Unfortunately our world really prizes success by accomplishments. Let's say Nella does not do those things ( perhaps she will but just for a moment) Does that make her less? Does that give her less of a life if she is still happy, loved and simply her? She will still be successful simply by being who she is because you have already installed healthy self image. Regardless of the future, your last post was completely fine and beautiful.

Kelle said...

To clarify, I don't think "child-like" is a derogatory term and I think the world still needs to see the beauty and potential in the entire spectrum of abilities that exist within the D.S. community. High expectations bring high results. And I have no doubt that Nella and her friends will do amazing things. That's a given to me. I do however want this blog to be a welcoming place for moms with children with all special needs, some which might not be granted opportunities to go to college or live independently. While I understand the importance of portraying this new, powerful face of D.S. and the danger in generalizing the D.S. population, I don't want to further marginalize the population within the D.S. community that face more challenges. I've met some remarkable mothers whose children make their mark on the world in different ways, but despite the highest expectations and interventions, they may never reach some of their parents' goals. They too need advocates and a voice.

Benay said...

You're fantastic, Kelle.

Kmarie said...

Thanks Kelle for that clarification. I knew you did not think that but was saying it for the benefit of others. I really appreciate your perspective. Thus the beauty in this. You are the voice you have been called to be and a huge testament with it. Keep living it:)

Sunshine and Sand Dollars said...

You are an awesome mother and an awesome writer. I love your blog and always look forward to new posts! Have a wonderful weekend!

Kylie and crew. said...

Your humility is inspiring! Regardless of your heart, your intentions, what and how you said it.....you are acting in humility and high regard for life. I love that in you!

Ginger said...

You are an inspiration to ALL mothers. Seriously. Keep up the great work!

Diana Doyle said...

Kelle,

The reason a lot of people come to your blog to read is because of 'your' realness, 'your' honesty, 'your' journey and of course 'your' amazing photos.

There will always be nay sayers, lovers and haters in this world, unfortunately.

I hope you continue to write with 'your' open honesty.

You know, in the grand scheme of life and death, I don't think what you wrote was a big issue....sometimes, people lose sight of whats really important...like having their child 'alive' and happy, no matter what age.

The DS community or any special needs community would be very very lucky to have you as their advocate!

with love
Diana x

Susie Q said...

You are teaching US......about YOUR journey with DS...all the trials and tribulations, you let us go along with you. The gentle comments you received...I'm glad they were not mean & hateful, but meant to inform you and educate you from another momma's perspective who has been on the same journey you are on. The best teacher is someone who has walked in your shoes....so kudos to those mommas who emailed you, and did so kindly, gently.
Ah, that Nella smile.......never get tired of seeing it!

Debby said...

Thank you so much for sharing your Nella and your family with us. Because of you so many will be more understanding of life's challenges. You are sharing your heart. We love you for just that.
I had a dream that a cute little blonde girl was by my side all night. I looked down and it was Nella.

Nancy K. said...

Your heartfelt ahonesty is so refreshing. Thank you for sharing it ALL with us! Such a beautiful, loving post.

Great photos of you and Nella!

bcmomma said...

That was a beautiful post! Learning and growing from each minute with an open heart is a trait to be envied by many.

Becca said...

Thank you, Kelle - your honesty and openness are very, very appreciated. I know that having such a broadly-received forum can't be easy, and you can't be expected to say exactly what each and every person wants you to say. And I think you've done a beautiful job.

Christie said...

A couple weeks ago I posted on my blog that you are my #1 inspirational blog I read, and that holds true and probably will for as long as you blog. I love your honesty and openness, and I just love your outlook on life. It's really inspiring and wonderful to read--thank you so much for sharing your story! I really appreciate your insight and always leave feeling ready to do great things and be a better mom. So THANK YOU!

CBH said...

I really enjoyed the previous post, how the conversation flowed between two loving patents. Brett's reply was so loving.

This post was beautifully written. Your father's comment was equally beautiful. I strive for such articulation.

There will always be criticism, support and differences of opinion. Imagine what a place the world could be if all criticism was respectfully given and graciously received?

I don't think any of us underestimate your journey, difficult for anyone and yours remains open to strangers.

Remaining true to yourself will be the best recipe for your & your family's happiness.

Wish you all the best now & always. Christine

Farmgirl Paints said...

Not trying to tickle your ear or win you over with flattery. I truly believe you do an amazing job advocating for chldren with special needs. Girl you didn't sign up for the job but you've graciously become a wonderful role model of how to do that hard job with strength and dignity. Kudos to you and all the other families that daily navigate those unchartered waters.

Whitney said...

You know, this is my favorite post of yours, ever. It felt very real, very well thought out, very meaningful. Though I have no problem with unicorns, I don't tend to be a unicorn person myself - so maybe that's what I liked about it? The rawness and honesty of it? I don't know. Anyway, nice writing.

priest's wife said...

You know when Jesus said "You must be like a child to enter the kingdom of Heaven."?

I think the way Jesus spoke of us needing to be like children is how you meant what you said about people with DS.

Patti said...

"I've met some remarkable mothers whose children make their mark on the world in different ways, but despite the highest expectations and interventions, they may never reach some of their parents' goals. They too need advocates and a voice."

YES. Perfectly said !!

Julie O said...

Kelle,
This was a beautiful and gracious post. Here is another example of how we are all learning from you. I am constantly amazed at your ability and willingness to "put yourself out there" for the whole world to see. I admire it so much, and yet I would be terrified to do it myself. You are a beautiful person, and I'm so grateful to "know" you. Thank you for sharing your life and story with us each week. My daugther with Ds will be 2 next month, and I'm so happy to be walking next to your family on this unexpected journey.
Julie

Megan said...

:::coming out of the closet as a "hater"::::

I emailed Kelle yesterday in regards to the "child like" comment and I believe my email is one of the two she refers to in the post. I emailed *not* because I hate her, her journey, her vision, her truth, but rather because I felt I had a different perspective to share. One of sitting on a Down syndrome board with two young adults with Down syndrome. Both of whom are mature advocates on Capitol Hill and provide pertinent points during board discussions. They are truly inspirational to me. And I love when we trade sarcastic banter over a beer.

My hope in opening a discussion with Kelle was that she would listen to my perspective. And she did. While her voice does reach many, I know it is not always my own (and I can go ahead and visit blogger and start my own blog!!). Although some see discussing a small phrase as splitting hairs or nit picking, I'd suggest that for those fighting to be considered worthy, no detail is too small. Why bother with people first language if it doesn't make an impact?

I am glad that further dialogue has occurred on this subject and I continue to hope that it will lead to embracing all our thoughts, opinions, abilities and gifts when offered in a respectful manner. Aren't we all on this journey together? Sometimes we are the teacher and sometimes the student. Both roles are fruitful.

I will continue to hold high expectations for my daughter as I allow her to lead me on her journey. She is the reason I speak up.

mommamitchell said...

Again...a homerun. Your heart speaks with perfect eloquence....

Laurel said...

You are a wonderful inspiration to me and so many others . . . I have such a tendency toward being defensive when what is really needed is a willingness to listen and learn. Thanks for the great reminder!

lightkeepersdaughter said...

Kelle - just another post among the many, that illustrate the depth and breadth of the beautiful human being you are! Thank-you...............Rosemary

The Cruce Family said...

I, like yourself, read through that statement without even thinking twice. Many of us don't look hard for the negative in everything.

Kelle, women everywhere are tipping our rose colored glasses to you!
Thank you for sharing your life and we applaud your courage!

shell said...

you are a gift to all of us. thank you for always sharing.

~KC: said...

LOVE this post! It is so beautiful, heartwarming and powerful! Love Remen's quote and your Dad's comments too. :)))

When I first read your "3-21,2012" I knew exactly what you meant. I loved how in your conversation with Brett you honored the lives of all the adults that have a child~like~mentality. Love that Brett and you are OK with it. Love your unconditional love for your daughters and that you will always love and accept them for who they are, no matter what. I know you have high expectations for your daughters and you always follow their lead.

We also have high expectations for our J and know she is smart, full of love, light, joy and wisdom. We "know" J has a lot of abilities and a future with many possibilities. We are aware that J has the potential to become who she is meant to become and she will always be loved, valued and accepted for being who she is...

I also love and agree 120% with your follow up comment: "To clarify, I don't think "child-like" is a derogatory term and I think the world still needs to see the beauty and potential in the entire spectrum of abilities that exist within the D.S. community. High expectations bring high results. And I have no doubt that Nella and her friends will do amazing things. That's a given to me. I do however want this blog to be a welcoming place for moms with children with all special needs, some which might not be granted opportunities to go to college or live independently. While I understand the importance of portraying this new, powerful face of D.S. and the danger in generalizing the D.S. population, I don't want to further marginalize the population within the D.S. community that face more challenges. I've met some remarkable mothers whose children make their mark on the world in different ways, but despite the highest expectations and interventions, they may never reach some of their parents' goals. They too need advocates and a voice."

Child-like is not a derogatory term to me. I can be "child-like" at times. There is nothing wrong with it. I wish I can always keep that spirit, enthusiasm, magic, wonder. I have met Individuals with Ds, differently abled and with specials needs of all ages. I have learned a lot from all of them. And, regardless of their high or low functioning their lives are meaningful. The ones I have met with more challenges have touched my heart more deeply. I love their child~like spirit and find it beautiful and awesome! Like you said on this post: "...no matter what our children look like or what they are able to do, they deserve to be valued and celebrated. Life deserves to be valued and celebrated." This is so true, beautiful and perfect!

In 2 years, by sharing pieces of your life~your story~your journey, you have done more for Individuals with Down syndrome than anybody else I know. You have done it beautifully and more important GRACEFULLY. You have been around children and adults with Ds. You have been involved with the NDSS and raised $206,410.22 to date, you have participated in 2 Buddy Walks, you have attended other special events. In only 2 years, you have changed a lot of the stereotypes people had about Ds all over the world and have increased positive awareness and acceptance. Because of you, all your readers, now can see Individuals with Ds and with special needs with loving eyes and that is priceless. Once again, thank you SO much for all you have done and continue to do.

xOx...Lots of Love~

“Neither a lofty degree of intelligence nor imagination nor both together go to the making of genius. Love, love, love, that is the soul of genius.” ~Wolfgang Amadeus Mozart

Donna O. said...

Beautifully stated ~ as always.

Abby said...

I know I've already commented, but I just wanted to add that I really enjoyed reading comments like JoJo's when she told of her daughter still being excited about the Easter Bunny as well as Megan's comment about sitting on the board with her 2 colleagues who have Down syndrome and advocate on Capitol Hill.

I feel good. I feel more aware. Which is what March is all about. ;)

Melissa said...

Thank you for this post. For listening to the emails, and for putting yourself out there in responding to them. I know you meant child-like in a wonder and amazement sort of way, but when so many people without a differently abled child are reading your blog anything feeding into the stereotypes of Ds really does matter.

Carolina said...

I almost never comment here but I just wanted to say that the last two posts have been amazingly beautiful! My admiracion to the way you write grows bigger and bigger every day! Thank you for being so honest and for opening that window into your life that inspires so many of us!!

Jenny Dawn said...

It is SOOOO hard to put yourself out there!!!! Both posts were wonderful-- great explanation. I posted something on an online community a few months ago and one of the moms messaged me about something I mentioned-- it was tough to hear I might not have been right to write it, but I think it takes grace, courage and honesty to be open enough to feedback and learning. Hugs to your beautiful family! Cannot wait for April 3 to arrive so my copy of Bloom will get here!!!! Cheers!

lynxymama said...

The first thing I thought when you said childlike was "well Nella is just like her mama in that way!" and I mean that in the highest of compliments as another mom who loves to color and dress dollies and eat play food and wear crazy costumes!!!! Much love

Kelly Cach said...

SO many good comments here! I was never offended, though....sometimes I think I may be too naive to be offended :)

I gotta say though, the quote from Mozart touched my soul deeply and had me welling up with tears. It's like my shoulders dropped a burden and said, "Whew!" Thank you to the commentor who shared it.

Kimberlee said...

Intention is everything.
I heard your heart, girl.
And I am blessed by those two mama's and pray I can approach advocacy with such grace.

booksatthepaperhouse.com said...

My daughter Joey is two months younger than Nella, and she seems to always be on my lap whenever I read your latest posts. She adores your photos, and whenever I scroll by one of Nella, she leans in to the monitor and whispers “Hi Joey,” thinking I’m flipping through a family album. Joey and Nella do have similar hair cuts, they seem to sit in the same position, and I have tons of photos of Joey doing a lot of things Nella does (playing with chalk, ones of Joey hugging her brothers, etc). So I can see how she’d think that.

I guess my point is that Joey’s reaction is the point. Or at least it should be. Seeing life through the filter of a two-year-old should be the point, perhaps, of this discussion, of this topic, of the way we treat others.

And whichever adjective we use to describe any child, perhaps the most important thing to remember is the intent behind the words. In the same way that Joey sees herself reflected in Nella’s beautiful smile and kind eyes, we would all do well to look for in each other.

Perhaps this site is the starting point for that change.

meg@ourwaytoeat.com said...

I am a daily reader whose mind has been forever changed solely by what you have shared. It is in what you have said, and what you have shown about your beautiful life, and your two beautiful daughters and your perspective. As a writer and a person, there is always room for learning and growth, but just know how much you are doing even if you say things sometimes that pricks up the ears of supportive perfectionists. It is only the love that really matters, after all.

Sherri said...

Kelle,

I want you to know that I thought about your exchange with Brett all day yesterday and I thought your choice of words were lovely, thoughtful, and perfect. Just like anything we write, the interpretation occurs with the reader. If a reader felt that you were being negative, it describes more about the reader's experience than your intention. Please take heart in that and know that it is good for all of us to listen - but the thing you do best is speaking your thoughts openly and honestly. THAT is the reason we come here.

My cousin had DS and was in the care of my mother for several years until he passed away at 57 just two years ago. We loved him dearly. He was amazing and smart and clever and funny and yes, he was child-like in many wonderful ways. He still got excited when he went with my son to visit the local fire station and if I could have shared in the joy he had in that, it would have been a great gift to me. We think that being adult-like makes us better or smarter or happier?? I think not. We are far more limited by that fact than any person with DS.

I come to read this blog because you constantly remind me to appreciate the little things. Hold on to that precious gift you have. And please, oh please, continue to tell it like it is.

Sherri

Natalie said...

I agree that it was very respectful of you to clarify your last post for those who may have misunderstood. I know the last thing you would want would be to offend. I, however (like so many of your readers), took your words as a beautiful statement. I aspire to be more child-like every day. I raise my own children with a mentality of "never grow up", because I don't want to ever be in a place that I feel too old to roll down a hill, jump rope, blow bubbles, or play dress-up.
I think it was very gracious of you to clarify your intentions, but I don't believe that you wrote anything "bad".
You have been a wealth of knowledge and inspiration for so many, and I hope you continue to write your posts with the same honesty and freedom that you have always done.

Br00ke said...

I'm glad you didn't apologize, but rather described it as a learning experience :) I saw no need for apology at all. Having a family member with special needs, and having known individuals with DS, I was not offended by what you said, knew exactly what you meant by it, and smiled remembering particular instances in which a man I used to work with displayed that "child like quality". "Child-like" isn't derogatory, it does not have to mean or refer to any limit on intelligence. I take "child like" as meaning having a different OUTLOOK on everything, and usually a quite positive one, at that! I would describe those I've known with DS as having an innocence, a pureness, a genuine enthusiasm like you said. The inability to deceive, or intentionally hurt another. The term "not yet jaded" comes to mind too haha All qualities I would see as gifts! We should all be so lucky. Different qualities, different abilities, embrace them as the gifts and upsides of DS :)

Emma Kay said...

I know I've said this before, but seriously, Poppa, will you adopt me???

irish coffee and chocolate said...

I understand you are writing from your experience. I think its beautiful. I knew exactly what you meant and I think it is pretty cool too.

Susan said...

So appreciate how you share your heart and the life that God has blessed your with. Everyone has their opinions but you are living this life. I read your blog post from the other day and thought it was a wonderful description. After all God tells us we must be like little children to enter the kingdom. God bless you.

Caryn Lantz said...

The thing that we must all realize about being Allies is that mistakes are part of the process. We are not perfect, but our work in advocacy and eduction is a work in process and the education never ends. As a mom though transracial adoption, I walk this path too. We educate those with less knowledge than us, and are educated by those who have walked in our steps longer than us. This is the beauty of loving.

Celina said...

Thank you for your sharing. I agree with other readers, your blog is inspiring and it´s a blessing for many. My prayers for you and your family in gratitude for your inspiration, moving stories and photos. I admire your creativity and you're a role model for many moms.

Stephanie said...

I so enjoyed reading the first chapter of your book. I was reading it at the end of my day and I was nearly in tears. After reading your blog for two years, I felt the love coming from your words and it was so near and dear to read. I taught a downs child my first year and he was my favorite student. Their perception of the world is so beautiful and refreshing!

Amy F said...

I loved the conversation you shared with Brett. The term child-like brought tears to my eyes. I have an uncle with Down Syndrome - Layne Johnson. He has been married to my aunt Shauna for 20 something years, and I ADORE them to peices! Layne is in his 50's now, and Shauna just younger than that. I look forward to traveling home so I can spend some time with 2 of my favorite people in the whole wide world. Last time I visited, they were showing me their kitchen (they live in their own house that shares a backyard with my grandparents). Anyway...in the kitchen were two wrinkled old potatoes that were covered in stickers, glue, and pom poms. I giggled a little bit, and ask them who gave them those cute potatoes. Layne & Shaunas eyes both lit up and they told me that they had made them themselves. They were so proud! It's honestly one of my favorite memories with them! They decorate potatoes, yet they live in their own home, drive a car, and are perfectly capable of making their own meals and keeping their home clean. They are amazing to me! I some ways I am jealous of my grandparents. I can't imagine anything better, or more fun, than two have those two precious people living so close. They aren't out traveling the world, they have something way more important keeping them home.

I don't know if it's wrong to admit this, but because of Layne and Shauna, and your cute Nella, I think it would be an absolute dream come true to have a child with Down Syndrome in our home. We have 4 kids right now, and I wish there was some way to put in an order for one. I know it doesn't work that way, but I am envious of the things you get to experience with Nella. She is such a sweetheart and brings a smile to my face on a weekly basis.

Erin said...

You are telling your story and telling it so well. My daughter has DS and I did not for one second misunderstand your words. I knew what you meant. I hope you never feel as if you need to edit yourself or second guess your words. Continue to speak and write from your heart. It's obvious your heart is full of only love for your children and for life.

Kristin said...

Well said. I too, think many adults with Ds have a child like outlook. I think more adults could benefit from being more forgiving, loving, enthusiastic, ya know - "child-like".

jean said...

Once again, you have touched my heart. I cared for my DS brother after my parents were gone. He was my big brother, being eight years older than I, but also he acted the part of the wise older brother. He was in many ways very wise. At the same time he was childlike in expression and for somethings in his understanding. Sometimes he would say the wisest words and looks down at me so lovingly. This wisdom and childlikeness woven together made him impossible to be mad at, very loveable, gentle, genuine and caring beyond words.As you say each DS person is unique.
Thank you for sharing your life so vulnerably.

Mike S said...

I have been one of your silent readers for some time now. I have felt like your family and mine are so similar at times that it makes me feel like someone else truly understands what my wife and I are going through all the good and sometimes just how scary it is. We have three kids an 18 year old, a seven year old, and a four year old. Allison is our 7 year old and has DS. Allison has many of the same likes as Nella whether it be hanger throwing, drumming on things, or the same wild stacking ability that truly is amazing. There is nothing wrong with having a "child like quality" as an adult or even stating it we should all be so lucky. Thanks again for sharing your real life stories,

5boysand1girlmake6.com said...

I think it depends where we are in our journey. I am in the same place you are and so your words were understood. You do a fantastic job communicating exactly where you are and that is all you can be expected to do. Keep up the great work! Love you all! Katie

Kate @ Songs Kate Sang said...

Kelle, that quote was beautiful. Thank you so much.

PB and JS said...

I have a tiny one with Ds. I'm only at the year point, and sometimes I wonder why others are so touchy with words. So what if the 60 year old moms call their children and mine a Down's baby. She's a blue eyed girl, and she's an extra chromosomer too. I want her to own it. If she has a child like mentality so what, because yes theirs the ones that go to college, but there also are many more that don't, and we need to quite hiding that fact from others, and maybe show we except that kind of child too. We are the ones that need to show acceptance first. However my girl turns out it She should be proud and own it. I really don't want to be so sensitive about words as she gets older (but who knows, I guess) I know I would never send an email however kindly worded to a newer Mom though. I love your blog, and be proud of that moment. You have a spouse who will accept his daughter no matter what kind of intelligence she shows, and that amazing.

Lindsay Marie said...

I love reading your blog Kelly :) I don't have any children (still working through college and I want to get married :) ) and I appreciate the unique insight that you provide. I want to thank you for allowing people into your life that you don't even know and allow them to see what you see. You have done so much for the special needs community and I only hope that as a future social worker, I can carry the same passion that you have when I'm helping others :)

Olivia : I am still learning said...

I hope those emails didn't weigh heavy on you...

because of all people, you should not have to feel guilty or explain yourself. I think the words you chose were perfect for that conversation and context.

Anonymous said...

The smartest people can accept when a good point is made by someone else.

However, in light of the love you show your baby girls, and considering your own advocacy on behalf of individuals with Down Syndrome, I suppose I knew exactly what you meant, myself.

In fact, no non-Down Syndrome individual has represented these important individuals better, in my opinion.

Besides, your photographs tell a thousand perfectly phrased stories!

Anonymous said...

When I see your photos of Nella and the other children from the 3.21 photos, I see nothing but beautiful kids, bright futures, and lots of potential.

So you are getting the right message out despite a faux pas, here or there.=)

Besides, your words for Brett were probably just right for him and just right for the conversation you two were having...even if they weren't exactly right for everyone us. I thank you for sharing your story – warts and all!

karyl said...

Kelle,

i am sure that though most of your readers might be of the DS family, but there are also a bunch of us that aren't but are still completely inspired! i have learned so much of how normal, different and unique people are. we are all still human. we are all so different and yet completely the same!

and thank you for inspiring me to voice out my story and my feelings! coz, dammit, it feels good! :)

Karyl
www.karylbartel.blogspot.com

Sally @ Us+House=Home said...

You are such an inspiration, Kelle. I love your words, your photos, your zest for life. Thank you so much for sharing your journey, your wisdom. And for listening too. xo

Sally @ Us+House=Home said...
This comment has been removed by the author.
rianz said...

Nice post Kelle. I assumed someone would have already sent you this... but just in case... a clip of a DS grown up and the company that has embraced him!

http://vimeo.com/35599794

... said...

I don't know what the issues were with your use of "child-like" but it is pretty clearly the opposite idea of "childish," and a word that I have never heard used negatively. I understand the potential offensiveness of assuming all people with Down Syndrom are "child-like" and nothing more, but I've only ever heard it used as a compliment and most often in regards to someone without DS who has managed to maintain a sense of innocence and joy. Your blog, for example, I think could be described as "child-like" in the best sense of the word.

As a writer and photographer (not dedicated enough to have a blog for either), I appreciate your pictures and your words, which are so clearly from your heart and the expression of who you are and your interests. Reading your blog, as an adult, I still identify most with Lainey, primarily because your blog captures the way I view my own childhood and my own mother growing up. The crafts and walks and games you play with Lainey and Nella take me back to my own days as a four-year-old, and as an adult, I so appreciate the time and attention and sense of excitement that those "small things" held. I know firsthand that it IS possible to raise children that way, because I am one of them. So thank you.

Jessica Martin said...

You are a beautiful inspiration. Thank you for sharing your heart, home, life & journey. Your words are profound and I drink in each post. The comment from your Proud Poppa brought tears to my eyes.

Team Copouls said...

I can imagine that it's difficult to not take people's emails and comments personally, and it's great that you were able to learn from their emails... but don't be so hard on yourself! You were answering Brett with compassion, trying to put it kindly, and to the best of your ability. You were not intentionally putting anyone down.

Rodolfo Montanari said...

Your blog is fantastic.

We have Gaia, 20 years, and at the same way we have enjoyed any little thing, with all difficulties of this life.

We live in Roma, Italy.

Couuld we share some pic of Gaia on your blog? How?

Thanks so much :))

Tracee said...

You alone are changing my view of people with DS. You see, I am 47 years old and ever since I was 5, I have literally been terrified of anyone with DS.

From the age of 5 until 10, my mother used to drop me off at the same dance studio three days a week. I always had to wait outside after class sometimes up to an hour for her to come pick me up. Right next door was a place where they would bus in DS teens and adults for day activities, I assume. Inevitably, they would be loading the buses as I was sitting outside and they would yell at me and scare me to death.

By the time my mother got there to pick me up, I was near hysterics most of the time. She thought it was because of dance...which was why I had to take lessons for five years despite not having not a lick of talent!

You would think that by the time I reached the age of 47 I would have worked through those feelings and recognized and understood the disability. But I hadn't. I only remembered the trauma. I rarely spoke of my fear. If I saw someone with DS in a store? Take a different aisle. I am ashamed of my behavior.

Your blog has changed this for me. Small steps. Kind words. Smiles. Handshakes. Those are easy for me now. I'm a work in progress.

Thank you!

Tracee

Gwen said...

Oh Kelle. Once again you inspire me to be better. Not so much because of the content of what's going on here. I, for one, thought that your comment to Brett absolutely came from the right place, and I never doubted what you meant. But because if I were as open and honest about an intimate, poignant moment as you were then...and I got emails of correction, no matter how gentle...my instinct would be to tell them to back off and then load on some more armor. But you didn't. You are gracious here, and stay open. And that is beautiful. You are a strong woman. And is there anything more beautiful than that?

Team Lando said...

PS. I love your dad.

Missy said...

As the mom of a child with a different genetic syndrome (16p11.2 duplication), I hope that we all, as moms/dads/grandparents of children with special needs understand that we are all advocating for them no matter what.

martha said...

Sweet Kelle. Your blog and your writing inspire me to be a better, more fun, present, intentional mother every time. I love Brett's response and the vulnerable way you share your heart. I get that things need to be defined but know that I read assuming the good intentions of your heart and I cry ALL the time because of how I am inspired, how I relate, and how much the same mothering is all over the world, and I LOVE that about being a mama. Thank you for your candidness and amazing writing. I am so thankful for you.

youaremysunshine said...

i agree with all the loving kind supporting comments!! do not let anyone make you blink an eye at how you share your heart, your life, how you write, your way with words, etc. Everyone knew your heart in that moment with brett...and his response...absolutely precious and priceless!! What we wouldn't give for all of our kids no matter what, to have a child like sense. it's what i will use to judge my own success of mothering one day...if my kids will have a child-like quality deep down as adults!! You took those emails with grace, love, and naturally...style! you are one amazing person!! xoxo hugs to you and brett and of course your beauties!

youaremysunshine said...

and one more than...after all, isn't that what God commands us ALL to be? "child-like", to enter His kingdom? it's a beautiful BLESSED quality!! xo

Jamie said...

I don't often comment, though I have been reading faithfully for a long time now. I just feel compelled to join the folks who are singing your praises, not only for this post but also for the 3.21 post. I totally understood the intention behind your use of "child-like" in describing adults with D.S. My friend, Leighanne, is a 30-something living with D.S and I can always count on her to surprise me with her views on things. I am a teacher, and there are many days when I wish I could have a "child-like" outlook on life myself. There will always be people who look for the bad in something that is so inherently good. When I read the 3.21 post I read it to my husband...oh to have the outlook on life that you and Brett seem to share. Keep up the good work. Thank you for always keepin' in real.
Jamie

Kulio said...

I love reading the comments on your blog - I especially agree with all who say they are learning right along with you. I like the commenter who said that if Nella has a child-like personality she will be just like her mama because that's exactly what I was thinking when I read the post. I think, whether it's politically correct or not, that you were supposed to use those words because it brought about such a cool discussion. :-)

Breakfast Sleuth said...

Girlfriend - YOU are a FABulous teacher, and to a be a great teacher, we must be great listeners. Your response is beautiful, but I also wanted to let you know that I found beauty in the 'child like'. You keep on a teachin.

madeleine said...

Kelle I love your blog and am a frequent reader - as a child of a parent with a disability i find your voice open and refreshing - you should feel free to speak your mind always. While the other moms have the best of intentions you always emphasize that this is your family's story. I did not find your post at all offensive and just wanted to tell you how much we appreciate you!!! xoxoxo

august raby said...

You rock! I am impressed by your honesty and sincerity!
I appreciate your clarifications- but none were needed! Your words ring true and I know that you meant it in the sincerest way possible that sometimes only a husband and wife can understand.

Thank you- can't wait for Bloom!

Carmen said...

Dearest Kelle,

You're nothing but class. I hate that the beautiful moment with Brett was ruined by the specter of overzealous political correctnes. This from a woman of color who is pretty much visually impaired.. Like some of your readers said, I know your heart and know what you meant with your words. Maybe other people don't because they're not longtime readers like us who know what you meant about being child-like. I thank you for sharing your experiences. Anytime my daughter, who is now almost nine years old,, sees someone with Ds, she says "Like Nella!", in a positive way. Muchas gracias, Kelle. You've taught me so much about parenting. I'm lucky to be your reader. P.s. much love to Poppa who is a model of fatherly support. Besos, papa!

Carmen in Bosotn

Carmen said...

Oops, I meant "Carmen in Boston". :)

Alexis & Lucas said...

There is a huge difference between your word child-like and child-ish. I knew exactly what you meant. However, I am also a firm believer that listening is one of the most important things we could ever do. So thanks.

nightwillow said...

You are listening . . . listening to the sound of all of your sponsors simultaneously yelling "fuck" when they realized you insulted your biggest fan base of readers, moms of children with DS. So instead of apologizing outright or backing your statement up, you say you are "listening". Way to go, you just convinced a whole group of moms that you actually give a shit what they think. But we all know that it was really the money that spoke to you. . . the sound of those sponsors pulling out their funding as soon as they read the first negative comment. You are so completely transparent Kelle.

MissingMolly said...

I didn't have the same reaction to your previous post as the people who emailed you did--I simply saw the unconditional love that you and your husband obviously have for Nella.

There's definitely a balance to be achieved between having high expectations for children and completely accepting them for exactly who they are. Someday, I hope to be able to maintain that balance with a living child. For, while I unconditionally love my Molly baby, I'm sadly unable to help her reach her potential.

I haven't read all of the other responses, and I'm sure this has already been written, but I think sometimes public figures are expected to be superhuman in a lot of ways. In reality, we're all human, and we are all learning as we go. I also think that, however high your profile, it's a tad unfair for people to expect you to represent the entire Down syndrome community. All you can do is speak your truth, and your truth speaks of love.

That said, I commend the people who emailed you for standing up for what they believe in in a kind and respectful way. And I applaud you for listening and being so thoughtful in your response.

Lastly, your photos are beautiful, as always.

Sonja said...

Your graciousness is to be admired. Your honesty, respected. Sharing your life is to be appreciated. Thank you for your advocacy, honesty, humbleness, your sense of raising the bar and your spirit of adventure. I love to read the words you share. Thank you.

Tonja Keene said...

When I read "Nella is two years old. We are learning. Every day." I instantly thought of a quote. I stumbled upon this quote on a day that I was feeling utterly defeated as a mama and once I read it my defeat was gone.

Not that you are defeated, but you, as Nella's mama (though you were already a mama), are only two yourself!

"The moment a child is born, the mother is also born. She never existed before. The woman existed, but the mother, never. A mother is something absolutely new." -Rajneesh

Jess said...

Please don't sensor yourself. Ever. Don't think twice about what you're saying when you have the best of intentions. I realize the emails were not "rude". However, it saddens me that people really do only see the negative things. Obviously, the vast majority of your readers were inspired and positively affected by your description of "child-like". This is YOUR life. YOUR blog. I do understand that you are an advocate and a lot of people are learning through you. However, you have been nothing but supportive and most importantly REAL about down syndrome in general. You are a human. You cannot be a robot to please the entire world. I'm sorry two people turned it into a negative thing. You're an inspiration to so so many, and I adore reading your real life conversations. Don't ever doubt yourself! Thanks for writing and being so vulnerable to let so many into your REAL, AMAZING, BEAUTIFUL, sometimes difficult like.

Casey said...

Just like everyone else has said, this is your blog and the reason we all come here and read every night is because we are going to get the "real" you and how you feel. It isn't WebMD, it is how you feel in this moment as a mother who is learning as she goes. I actually have a niece and a nephew with DS in their 30's and they are both "child-like". They both went to school and have jobs but they prefer toys for Christmas over clothes and they both still believe in Santa. They play with the kids instead of sitting around talking to the adults but can feed themselves, go to the bathroom and lead very normal lives. I am pretty sure what Kelle was saying was that Nella would always have that!! And I think that is a wonderful thing! I'm not saying the emails were a bad thing but unless she uses a derogatory term towards DS, then let her blog about her thoughts and feelings without having to worry about if it is going to make some advocate be upset or think it is damaging to a certain community. Let her be the author of her own blog...she has done an amazing job thus far and I am pretty sure has shone much more positive light on DS than negative :)

Erin said...

Kelle, I think you chose your words perfectly. The dictionary actually defines "childlike" as: "resembling, suggesting, or appropriate to a child...especially: marked by innocence, trust, and ingenuousness ". Nothing negative in my mind about that description! In fact, we adults would be wise to resemble more of these qualities in our own lives. Our Childlike qualities are lost as we become (in a sense) jaded through life experiences. I look forward to watching my daughter (with DS) go through life hopefully never losing that sense of childlike awe and innocence. Already she is the happiest, most unassuming child I have met, and everyone is drawn to her and her goodness. I just can't believe I get to be her mommy and have her around me everyday. And thanks Kelle, for always finding the beauty in the simple things. You are an inspiration.

Karen said...

Kelle,
My husband and I have had the same conversation that you and Brett had. I saw nothing wrong with your choice of words and totally understood what you meant. Loved Brett's response too!
I also agree with Poppa about you not asking for, but graciously taking on, this voice and I think you are doing a phenomenal job! I enjoy the glimpses of your life and your words and pictures. Thank you for making me a better mother and for advocating, thru your typical life, for Down syndrome.
Karen H.

sandy+bails said...

I love reading your blog, it reminds me of my little sister who also has downs (who is actually turning 19 this year) helps remind me of her younger years as we are only 3 years apart.
Thank you for you blog it makes me smile.

Swedeheart said...

I discovered your blog a little while back, through Instagram. I love the way you write, the way you talk to us about your family, the beautiful photos...There is no doubt that you are a terrific and amazing mom! I have shed many tears (of joy, mostly!) reading your blog, seeing the photos of your beautiful girls and wishing that every child on this planet had a mommy like you. You are an inspiration to all of us.

BLOOM - Parenting Kids With Disabilities said...

Bottom line I read it as acceptance.

My son has intellectual disability and turns 18 today. There is a child-like quality to him and his interests. He never got into the typical teen need to conform. He doesn't wear a mask trying to be someone he isn't.

I don't know how to reconcile the concept that he is a man and yet in many ways still a boy. I tried to in this post:

http://bloom-parentingkidswithdisabilities.blogspot.ca/2012/03/from-boy-to-boy-man.html

I think we are all full of contradictions and these two can co-exist in my son and be valued.

Rik said...

For Nitewillow, I would first offer a bar of soap for language unbecoming a young mother (but ask Kelle, her dad has little tolerance for coarse words). Second, after visiting her blog, I would remind her it is Down syndrome, small s (A correction I learned of early in our journey--one of so many lessons I am still learning). Third, her observations and conclusions are so off the course they are laughable. Kelle's wonderful sponsors have never objected to posts, words or messages--and I certainly know Kelle doesn't write to simply please a certain audience and does listen to all who speak with grace and sincerity. Ironically, her largest following are those who have no child with Ds but are learning about this distinction through reading this blog. I believe the one who is really transparent is this commenter and I only hope her precious child overcomes individuals like her--who make assumptions without truth, who look for stumbles more than strong strides, who try to tear down instead of building up. Those individuals are the nemesis of all who aspire to live and love fully in this world.

Keely D said...

Beautifully written!

Mrs Males said...

Must know.... Where is Nella's suit from??? I'm in love!!

caleigh.crow said...

You know, when I read your words " child like mentality" it stung a little. Then I developed my own ideas as to what that meant. Love without prejudice. Fully being able to forgive... amoung many other traits ,I myself, am jealous of. Thank you for your blog, wonderful pictures and for listening!

Delgado said...

Oh goodness. I love your blog. I can't even leave a comment because I am so on the fence about people emailing you regarding the PC-ness of your statements. Your family is beautiful- your stories inspiring. Thank you for being you, and being willing to share you with us, millions of strangers.

punkins said...

I understand the need for the other moms to refine your description but I believe the reason so many people have connected with you is that what you say in your writing is so vulnerable, yet wise and your mind always so open. You are on a journey of learning and growing and we are fortunate enough to be along for the ride!♥

openid said...

Beautifully written, as always...

6512 and growing said...

you are lovely and brave.

Andrea said...

Gracious as always!

Annie said...

Love how and what you have written.

Ruth said...

Hello,
I've lurked on your blog ever since you shared Nella's birth story and have found your writing and photos to be so inspiring. You have two adorable girls and your passion for life cannot be missed on this blog. Thank you so much for sharing.

Michelle said...

Grace and class, as always. :)

S. Chance said...

You are an inspiring person. I commend you for sharing your life. Keep enjoying the small things!

Rose said...

I've always loved the way you articulate yourself and your intentions have always seemed pure. It is a weird thing to think we all read the blogs of others we don't know from adam, but it makes the world feel a little more cosy, less enormous. Your outlook on and attitude to life always make me think about my own and for that I am grateful. Thank you for sharing once again. much love x x

Melissa said...

I am impressed at the way you heard your readers and responded with an explanation. Personally, I understood what you meant without the explanation, though. Of course we all know that individuals with Down Syndrome are doing amazing things - I didn't think you were limiting Nella (or anyone else) when you used "child-like mentality" I heard it as a deep understanding of Nella's spirit. She will see the world differently than I do - than many do and I think child-like is one way to describe that outlook. Sure, there are lots of ways to describe it - but I think your description was beautiful.

genderist said...

Beautifully said. Isn't it great when good-hearted people tell us what we're supposed to say next? I love when the universe surprises me with serendipitous advice that I really needed.

Your story is a blessing. Thank you for sharing.

maplewalnutmama said...

Kelle,
You have made a difference.
People have changed because of your willingness to share your story. I hope more people will continue to change - to be more kind, more accepting, more loving. Keep listening & keep speaking your truth.
Thank you for doing what you do!

Laura said...

I love hearing people's stories and moments....
However you spell it out is you, and you are never rude or ignorant with your words. My heart hurts for angry people or even just sad people. Please keep sharing all your beautiful pieces of life. Like you are saying, being vulnerable and open is what ultimately wins.

Erin said...

I have tears in my eyes Kelle... thank you. Mostly for being so honest and willing to learn. This was beautiful.

nightwillow said...

Rik -

Your words mean nothing to me. I am a mom of a child with DS - I could really give a shit less about what you, or anyone, think of me and my filthy language.

I have real experience of being a mom of a child with Down Syndrome (I mean really you are going so low to insult me for the capital "S"-get over yourself) and that real experience is so much more than what Kelle ever writes or expresses on this blog.

What I'm pointing out is that Kelle is fake. Her blog is fake, the beautiful pictures . . . . it all feels so contrived.

I like who I am, how I express myself, the language I choose to use. I'm all about being oneself - I just feel that Kelle doesn't do that, instead she uses this blog to make money and pretend at a perfect life. It's sickening.

Rik said...

Night,
your spirit shines through your writing and explains why you would hold some things suspect and not genuine,. I wish you and yours well, your young son is adorable. Blessings!

Karen said...

This blog is a beautiful reminder that no matter what goes wrong in my day, things always go right, too even if they are few and far between.

Life is what we make it.

Thank you, thank you, thank you Kelle for touching my heart, for encouraging me to grow and consider and appreciate. Please keep the rainbows and unicorns coming because they are beautiful reminders that so much of life is what we create for ourselves.

Amelia said...

That was a gracious response, one that had me thinking for a few days. Keep up the good work.

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

“A pessimist sees the difficulty in every opportunity; an optimist sees the opportunity in every difficulty.” ― Winston S. Churchill

Thank you, Kelle, for the optimism you have for life. It disheartens me to see when others aren't able to do the same. Love to you and your beautiful family!

Baby Hung said...

Your little one is sooooo stinkin cute. Love to read your blog. Visiting from texas!

Team GZ said...

Kelle, you inspire me! I am sorry to read some of these comments but so glad that you stick to the golden rule of 'to thine own self be true'. The pictures you paint for us, of your life and journey are amazing. You are willing to put yourself out there even though sometimes it hurts. Thank you for sharing with us!! Know that you have a huge fan base that loves and appreciates you and your sweet family! xox, Marianne in Seattle

J & K said...

Thank you for sharing the joy you are experiencing. The love you have for your children is so evident - I love it when I see someone so thoroughly enjoying their children. Our second child recently died and we have truly learned the value of such precious lives. To see you treasuring Nella's uniqueness reveals the magic that the love of a child can work if we let it. What a privilege to see into your love for her. Thank you.