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Kelle Hampton, pictured with daughters Lainey, 2, and Nella Cordelia, eight weeks, shared on her blog the unexpected news that Nella has Down Syndrome. Credit: Kelle Hampton
Kelle Hampton's blog, Enjoying the Small Things, is a lush peek into her life as a photographer, wife and mother in Naples, Fla., gracefully told with her own gorgeous photos and beautiful prose about the poetry that can be found in everyday life.
Hampton, 31, has been writing about her life as wife to husband, Brett, and mom to her 2-year-old daughter Lainey nearly every day since December 2007. It made perfect sense that she would announce the birth of her second daughter, Nella Cordelia, on her blog. And she did, with this entry written by her sister and posted on Jan. 24:
That first post garnered more than 100 comments from her readers. Since then, the story of Nella's birth and how her unexpected Down Syndrome diagnosis left the young mother stunned, has gone viral, spreading through links and social media networks. Hampton writes a breathtakingly honest post about the conflicting emotions -- heartbreak, joy and fear -- surrounding her second daughter's arrival:At 4:24 pm, January 22, 2010, six pound Nella Cordelia Hampton entered the world and our hearts.
Nella has Down Syndrome.
I knew the minute I saw her that she had Down Syndrome and nobody else did. I held her and cried. Cried and panned the room to meet eyes with anyone that would tell me she didn't have it. I held her and looked at her like she wasn't my baby and tried to take it in. And all I can remember of these moments is her face. I will never forget my daughter in my arms, opening her eyes over and over ... she locked eyes with mine and stared ... bore holes into my soul.
Love me. Love me. I'm not what you expected, but oh, please love me.
More than 2,000 readers left comments of love and solidarity for the Florida family, and Hampton's experience continues to resonate. The story of Nella's birth was not what Hampton ever expected to write, nor was she expecting the surge of compassion and support her words have attracted from the online community. But, she tells ParentDish, her newborn daughter -- and the way the world has embraced her -- has helped her see that perfection comes in many forms.
ParentDish: You've been blogging for a long time, but the story you wrote about Nella's birth was so personal, and so beautifully written. Was it a hard decision to write so honestly about such a personal moment in your life on such an open forum?Kelle Hampton: There wasn't a question in my mind that I would write about it. I realized when I wrote the birth story of my first daughter what a therapeutic beautiful experience it was for me to recall and document all those emotions, and what a gift it was for her someday to read it.
Then, after the agonizing emotions of Nella's birth, it wasn't just that I wanted to write her story, it was that I needed to. I walked around for a week like I was holding back, like I couldn't really move on until I wrote it all down. And the moment I finished it, I walked out of my bedroom, face completely blurred with tears and said to my husband, "There. I did it. I can move on."
As far as the open forum, my blog at that time had a pretty small readership of friends, family and a few people I have come to "know" through the incredible blog world. I had no idea it would become so public. However, I think it is a personal moment that needs to be shared, to welcome other mothers who have gone through this to talk about their feelings, to rid themselves of guilt, and to know that these gut-wrenching emotions are real, are shared and are OK.
PD: Were you surprised that your story moved so many people?
KH: Yes and no. I was surprised our story received so much attention because this story is like so many others. I've met so many women through this story that have gone through the same thing, and they have told me, "You told my exact story word for word." So the fact that this stood out as different from any other story has been surprising. I think the reason this story has gone "global" is perhaps because I talked about things that not everyone is comfortable talking about.
When I published my birth story, within days the hits on my Web site started rising astronomically. I answered the phone one night to hear my dad: "Are you watching what's happening on your site right now? You have 753 comments, Kelle." And it just kept growing. I was shocked. But, during those first weeks when things were still very difficult and hard to take in, I cannot begin to explain what a lifeline these commenters were. I would sit in the middle of the night, nursing Nella, and scroll through my e-mail on my phone and just weep. These amazing, beautiful people said the perfect things.
PD: How has Nella's birth and her diagnosis of Down Syndrome changed you?
KH: It has changed me to the core. I've learned how "pain" shapes you as a person and propels you to new depths and how "perfection" is not the glossy magazine cover that Hollywood portrays. I'm learning to shed off the shallow parts of my character I've adopted over the years and replace them with love and appreciation for real, painful, beautiful life.
PD: Nella's Down Syndrome clearly came as a surprise. Did you have any testing done prior to her birth?
KH: I did not have any testing during my pregnancy. Her ultrasounds did not show any "markers" for concern, and although I know many of these tests are beneficial in identifying problems, I have known several people who have received the testing only to get false positives and therefore cause alarm for the remainder of that blessed period of a woman's life.
Would I have changed the fact that I didn't know Nella had Down Syndrome? My experience, although painful, is still beautiful to me, and having my beautiful, perfect daughter placed in my arms was still a reward and holding her and loving her took the pain away so much more quickly than if I would have had to deal with the news for 20 weeks prior.
PD: You mention on your blog that you planning to write a book. Can you share with us what prompted you to make the decision, and will it be about your journey with Nella?
KH: I've always wanted to write a book, ever since I was a little girl and fell in love with creative writing in elementary school. I didn't, however, know what the topic would be. Nella's birth and (our) journey will definitely be a big part of the book, but I would love to look at the greater scheme of life and what I've learned from all the experiences I've encountered, from the painful to the funny to the beautiful.
PD: The vulnerability you show on your blog is very touching. Is it scary to put yourself out there like that?
KH: Every once and awhile, I'll question myself about this, but it's becoming less and less. It's funny, because when people ask this question, I'm actually a little bit surprised because aren't the things I discuss entirely common? Do we not all feel these things at times? I think that is what people are actually drawn to. And the more we know that others have those real feelings, the more we ... know that we are all doing our very best to love our kids and to become better versions of ourselves every day.
PD: Will you continue to blog?
KH: I do what I love, and blogging -- weaving words and images together to tell the beautiful story of our lives -- is something I love. In blogging, I have learned to look at the mundane events of our life more beautifully, to "paint" them, stand back and proclaim, "This is a masterpiece." Everyone's life is a masterpiece, but sometimes they may not realize it until they take a bird's eye view, which is what blogging allows me to do.
PD: You said in the past that you were skeptical of the Internet. With the outpouring of love and support from so many strangers, have you changed your mind?
KH: I have. I think with any public medium -- and by public, I mean even taking your family out to dinner -- you have to maintain some measure of caution. This medium is still somewhat new. However, it allows so many people to connect in beautiful ways, and I have learned from the support we received that the Internet can be a powerful and profound way for the world to connect.
PD: What is next for you and your family? Will you have more children?
KH: Our goals in life are always centered around being together, that will never change. I look forward to many years of baking cookies with my girls, picnics in the park and puzzles on my living room floor. However, I believe Nella's story and the way people have drawn inspiration from it has opened many opportunities for me as a writer, blogger, photographer and as an advocate for the Down Syndrome community. Most importantly though, we will continue to "enjoy the small things," together, as family, for many years to come. As for more children, I've always wanted three kids. And although I can't predict the future, one more baby sounds pretty dreamy.
PD: What would you like to say to parents who find themselves in your shoes?
KH: You're going to be just fine. I promise. In fact, you will be better than fine.
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ReaderComments (Page 5 of 7)
3-25-2010 @ 12:08AM
jen william said...this is not a bad thing, my daughter is handicapped like this, they are a delight to be around, they will achieve many things and give you great joy. God only gives special babies to special parents , this is true. enjoy her .
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3-25-2010 @ 12:16AM
LeeAnn Kimbrel said...Kelle,
I just read your story that I saw on aol. I am a 32 year old mother of 4. I have a 10 yr old Haley, 8 yr old Abbey, 4 yr old Anna, and 2 yr old Parker. I was 27 when I had Anna. THru out my pregnancy we were told that there were markers for Downs. When I had the bloofd test done at 6 months they ruled it out. Things like that are uncommon in women under the age of 30. However, on June 21st, 2005 I gave birth to little Anna weighing in at 5 lbs 4 oz. She was a month early and yes she did in fact of Mosaic Down Syndrome. I felt as if my whole world had fallen apart right before me and there was nothing I could do to put the pieces back together. Then she spent some time in the NICU and while there we found out she also suffered from AVSD. A heart condition found in Down Syndrome children. At 4 months old she underwent Open Heart Surgery. That I think was worse than finding out she was Downs. Since then she has grown and getting the therapies she needs to become an amazing young lady. I feel very blessed to have her in my life and would not change this expierence for anything in the world. She has shown me the person that I want to inspire to be and everyday I work harder to achieve that. I am so glad other people are sharing their stories and I just wanted to share mine.
Sincerely,
LeeAnn Kimbrel
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3-25-2010 @ 9:33AM
Tammyy said...Your story has touched my heart. I am 26 weeks pregnant and abouat 3 weeks ago I found out through an amniocentesis that my baby has DS. I cried and cried a lot that day, but have since began to try to deal with it. I already have so muh love in my heart for her, and hearing a story like yours helps!!!
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3-28-2010 @ 11:33PM
painter said...Each baby is such a gift. You planned to go to Paris but you got a trip to Vermont. Still a beautiful trip , just not the one you expected. Nella will be the most loving of all your children and a great teacher in quiet ways to all your family. How joyous is that. God Bless all of you.
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3-25-2010 @ 8:52AM
Cassie said...Kelle- What a beautiful sotry..I too was 31 when I gave birth to my 3rd son, Matthew, born with Down syndrome.I cried for days..and wondered hpow I woudl cope...every time he smiled he gave me strength... He is now 28, and has brought me joy, tried my partience, made me laugh and there is not a day that goes by that I am not eternally grateful for the mark he has left on my life and that of my family's...you have a journey and like any parent...never easy, sometimes thankless..but the joy is endless..welcome to a whole new love!
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3-25-2010 @ 12:37AM
tweb142 said...So I guess now our SSI tax dollars will pay for this little one. The strong struggle and the weak .....
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3-25-2010 @ 1:38AM
Dede Lewis said...Hi Kelli, Congratulations!! I was a nurse in the well baby nursery at a local hospital when a young lady presented in advanced labor and soon a lovely baby girl was born. As we readied her to meet her mom, to hold, count toes etc.we knew that she had Downs features. The odd part was that her mother had been on birth control and was in her early 20's! We waited for the doctor to tell them that their new baby had Down Syndrome. They took the news as well as you would expect, her husband brought photos of her first daughter and said she looked a lot like her big sister, trying to rationalize that she was "normal". I spent a lot of time with the family, helping her to nurse. About 10 months later she brought her back for a visit to tell me that she was a complete joy!! She was totally in love with that little girl and it showed. She said that she would not change a thing about that day...I found that to be the case quite often. That was 31 years ago, before ultrasound was common. I do not have to wonder if she would have terminated the pregnancy if we had the tools and tests that we have today. I know that little girl was born to the right parents as she was nurtured and loved very, very much. .
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3-25-2010 @ 12:54AM
alygator said...I Just now read your story and was so impressed...You do have nice writing skills.. When I go to Mass there are several families I know that have a child with DS. I usually go with one of my daughters and I always tell her that I would have loved to have a baby with DS...they are the cutest children I have ever seen.. They are so sweet and loving. When I look over at their child the families are always wanting to hold or cuddle their child or sibling. You are blessed.. I am so happy to read the other messages. The thing that makes me sad is that not very many men write you messages. I have two grandsons and I hope I teach them it is OK to share their feelings about things of an emotional nature. Good luck with your writing.
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3-25-2010 @ 12:55AM
Jan said...Kelle,
I have been where you are - we are not quite 8 years further down this beautiful road and I can honestly say that you are right....you will be more than fine! I don't know if you are familiar with Steven Curtis Chapman's music, but one of his songs is called "Fingerprints of God". Some of the lyrics in that song are as follows:
"Never has there been, and never again will there be another you.
You were fashioned by God's hand and perfectly planned to be just who you are, and what He's been creating since the first beat of your heart is a living, breathing, priceless work of art.
And I can see the fingerprints of God
When I look at you
I can see the fingerprints of God
And I know its true
You're a masterpiece that all creation quietly applauds
and you're covered with the fingerprints of God"
Fashioned by God's hand and perfectly planned to be just who you are little Nella!
Prayers for you - Congratulations on the birth of your beautiful baby girl!
Jan
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3-25-2010 @ 1:11AM
Brea said...Kelle, your family is beautiful. It was late when I read the first few paragraphs, but I had to say thank you for sharing your birth with "me". I am a "retired" childbirth educator/LaLeche League Leader, and mama of three. Your courage, strength and unconditional love is truly a gift from God. I wish the best for you all and enjoy your nursing experience :) Nella has a Special Mommy as well.
My daughter, (my baby) is due 8/21/10 and she just had the AFP profile done. It will not change the outcome, but she would want to get the education of any condition if present and detected. We had a sono today, her placenta is low lying, possibly partial previa, but may grow away from the os, so no real worry.
Seeing my granddaughter was a thrill. We expected a boy, and were surprised with a girl. It is also warming my heart to see my daughter already love her daughter unconditionally.
The way you love your girls will carry them far in their lives, and they will remember your nurturing.
My middle guy has PKU. I learned all I could about his condition and nursing him was the best thing for him, as I gave him the live amino acids he could not metabolize, and had the lowest phenylalanine content. He thanked me for his healthy brain. I cried and did the blame thing, but found PKU has to be on both sides of the genetic snapshot.
I wish there was this venue available when I had him, as I wish there was a blogger for that.
Thank you again for your intimacy, you have given Down's syndrome a place to go for support.
WarmLLLy, BeaB
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3-25-2010 @ 1:03AM
Elaine said...Anyone who has a Downs person in their lives should read "Angel Unaware" by Dale Evans (as in Roy Rogers and Dale Evens). "Angel Unaware is a tiny little book about their daughter, Robin, who had Downs, and it offers a beautifully presented story full of insight and wisdom that is unparalleled in other books. It's an old book, but it's been released over and over, so you can find it on Ebay or Amazon.
I had an aunt who had Downs. When I was a girl, I found her annoying and an embarrassment when she wanted to tag along with me everywhere I went. I was not especially kind to her. One day my mother handed me "Angel Unaware" and literally made me sit down and read it. It changed my life. It changed how I viewed all people who have special needs, it changed how I felt about my Aunt Kova, and it inspired me to have a deep empathy for others that continues to this day. In fact, what I learned from that book and from my aunt inspired me to adopt a special needs daughter- who has been the greatest challenge and also the greatest teacher of my life.
One of the worlds' greatest secrets is that people who share their lives with a Downs person are really most the fortunate among us. Downs people have a very special lesson to teach those of us who will watch and learn and listen.
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3-25-2010 @ 1:16AM
ana said...WELCOME TO HOLLAND
by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability -- to try to help people who have not shared the unique experience to understand it, to imagine how it would feel. It's like this ...
When you're going to have a baby, it's like planning a fabulous vacation trip -- to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. Michelangelo's "David." The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes and says, "Welcome to Holland."
"Holland?!" you say. "What do you mean, Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guidebooks. You must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss.
But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland
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3-25-2010 @ 4:29AM
Yroarrah said...@Ana- thank you for sharing that article "Welcome to Holland". I have never heard a clearer description of what a parent feels like when a child with special needs becomes part of the family.
3-25-2010 @ 1:44AM
teresa said...May God bless this woman and her beautiful children. I never got the some of the tests for the same reason as her, a pregnancy is supposed to be a special time we only get to enjoy a few of them as a woman and who wants to worry throughout. I have a nephew with Down syndrome and I hope that the mother in this article knows that God must have sent her that baby knowing that their family could handle that baby.
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3-25-2010 @ 2:13PM
Magda said...Dear Kelle, what a wonderful story, brings back memories. We are proud parents of America she is now 33, I can't say I knew when my daughter was born because I didn't see it. All I saw was a precious little angel. Didn't get any answers to why she could not feed well & sleepless night wondering what was wrong. She was two months by the time we got the results. Dr called us into his office then & gave us the big surprise we didn't not have a clue what he was talking about. I was in shock my husband started to cry, he told us she is a very special child take her home & just love her. After the the shock I just sat with her & cried for days, that explained a lot of her health issues that some children with down syndrome have & she was one of them with. Diagnosed with congenital heart defect explained her weakness not being able to eat. Back then they did not have the medical technolgy we have now. It wasn't till she turned three that she was strong enough to endure open heart surgery. Having to travel 3 hours away for her surgery was not easy.Having a 4 year daughter we had to leave behind two to three weeks at a time was very hard. Now at this age she is doing well, socially she has reached the teenage age. She has boyfriend a cell phone & knows when 7 in evening comes so she can talk on her cell phone. She is the greatest joy in our lives, keeps us busy we got her a VW Beetle & says come on mom take me here & there, an asures me that it is her car with a chaffer. I feel we are chosen by God & gave us the wisdom & grace to take care & love our special angels. After three years we were blessed with another daughter in perfect health I was 32 by then. Many Blessing to you & your family
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3-25-2010 @ 1:38AM
Kim said...When I was 18 I gave birth to my first child... Melissa was born with Down Syndrome. It had never been detected by anyone.
Melissa is now 30 and I wouldn't change anything about her.
God bless you.
Kim in So Cal
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3-25-2010 @ 2:10AM
Evonne said...Kelle,
You are a Beautiful sister,woman and Mother.God has blessed, called, gifted and equipped you with a very special calling of "Motherhood" in a unique way.He in His Sovereignty is doing a GREAT WORK and using your Special little Nelles' life.You touched my heart and re-confirmed my stand on Pro Life!!!! Every Baby is a miracle of God!
Evonne
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3-25-2010 @ 2:08AM
CK said...Such a remarkable woman. May she be the inspiration for others who need character and insight. It is also unique that she didn't want a "test". Such a remarkable woman. Her husband, family and the world are all very fortunate to have her in it.
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3-25-2010 @ 2:34AM
dragonrider said...your girls are beautful they are special as amother of three childern that disabled they bring joy to the small things that people over look . love them always and bless you and your family.
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3-25-2010 @ 2:21AM
JACQUE said...When I was 23 my mother remarried a man with a 10 year old boy with down syndrome. He was such a joy to be around. He was happy and excited about his part in the wedding. On the day of the wedding after the vows were spoken, he and I went down to the reception hall where he began introducing me as his new sister. We became very close in the short three years after but, unfortunately my brother collapsed and died one day where we had gone for a family pinic. I learned so many things from him during the all to brief time I spent with him. I have continued working with special needs children in the nearly forty years since his passing because of what I learned from him. I went on to marry and have raised three children, two of whom have special needs.
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