Tuesday, July 6, 2010

On Down syndrome

The title of this post may surprise you. Because it surprises me. Because...I forget. The two words that felt so heavy months ago, like iron chains that shackled me and pulled me beneath waters that choked and suffocated me until I almost drowned. They're gone, those shackles. I float happily now, light and free, aware of its presence in our lives but...well, just that. Aware.

This is what I wanted. As I was scraping away layers of who I was months ago, discovering our new meaning, rearranging things in our life and finding a place for the new term to live in our spaces, I hoped I'd end here. That life would take center stage and Down syndrome would move to the back like a stage assitant whose name appears in small print at the end of the credits. I searched the Internet for families that did it like I wanted to and put band-aids on my heart when I found them...familes that moved on and loved life--the ones that you'd never know "it" happened to them unless you dug a little deeper. Families that were not defined by it. And it happened on its own. We became that family, the one I wanted to be.

But every once and awhile, it appears. Last night as she was playing, grasping toys and waving them in front of her. And her movements were a little choppy, up and down, up and down, pounding her forearm to her chest like a hammer. And Brett looks up at me and says, "Is that normal? That choppy movement? Or is that Down syndrome?" And for one tiny little second, my mind starts spinning. Is it normal? Did Lainey do it? What if it's not? And I want to Google it, but I don't know what to search. And I don't want to see what it says. And I laugh it off and go to bed but it's 6:00 right now and I'd be lying if I didn't say I woke up early and have let the bus hit me again. It could have been a light and easy hit, but no. I asked the driver to hit me hard. "Smack me real good so my body flings up in the air like a dummy and I hit the pavement hard on the way down," I tell him. And he obeys.

See, I don't usually think this way. In fact, I was commenting to a friend the other day that my acceptance of Down syndrome is much like her acceptance of having two boys. Like sometimes it will hit her for a moment that she never had a girl. And for one second it might be sad...that "I'll never know what it's like to have a girl" feeling...but then instantly comes this love for her boys and she smiles and moves on. The same argument could be made about only having girls and never knowing what it's like to have a boy. And that's just what it's like for me. Mostly I don't think about it. But sometimes, for one second it will hit me..."My daughter has Down syndrome," and my throat will start to tighten and for one second--one tiny, tiny second--it hurts, but right before it closes to the point of robbing my oxygen, it opens back up--as quick as it closed--and I breathe. "Yeah? So what. She has Down sydrome."

My friend might never know what it's like to have a girl. I might never know what it's like to have a boy. And I'll never know what it's like to have a Down-syndrome-less Nella. But there's a lot of things we'll never know. Every choice we make eliminates another. Random as it is, I'll never know what it's like to be married to an Asian man, an Australian man, a British man with a sexy Hugh Grant accent. I'll never know what it's like to get wasted on my 21st birthday. I'll never know what it's like to have triplets or to travel around the world before I get married. I'll never know what's like to be a natural blonde. And I'm not going to cry about any of it because there's a million random things I'm never going to know, and everyone's life is custom-made for them. And when I hear about moms who kiss their babies before running to their chemo appointments or kindergarteners who draw pictures of their daddy-less families and nonchalantly tell their teachers that their daddy's in heaven...well, I'll take my custom-made situation just as it is, thank you. Because it's beautiful and I am grateful.

Photobucket

I am reminded that I had these same feelings with Lainey. That there were plenty of nights I woke up early like today, unable to sleep because my mind wandered over unexplained fevers or scabs that didn't heal. I've been hit by the bus in non-special needs land too, and I guess that's a comfort. And hell, maybe she grabbed toys and jerkily hammered them to her chest too. It's okay, it really is. I just had to put it out there. Peel off the painful layer, type it out and put it to rest where it belongs.

Parenthood is hard and beautiful. Scary and rewarding. Sad and Happy. All at once. Last week my friend traveled to Texas to be with her best friend when she welcomed her baby early...just three-and-some pounds. It was scary...and although my friend doesn't have babies yet, I had to sit back and smile at her account of it all after she kissed that baby goodbye and headed back home. Because she was smitten with the love of that little boy and what his family went through and being present to witness the transformation welcoming new life does to you. Especially when it's a little bit scary. It rocks you to the core. Picks you up, smacks you down hard and then rebuilds you with all new parts. Loving littles is one of the greatest, most wonderful things that will ever happen to you. And the minute you welcome one into your life, you inherit a thicker skin...because the bus will hit you plenty of times to the point you'll think you damn near died. But you don't. You pick yourself off the ground, dust off your knees...and move on. Because beauty awaits. The beauty that fills in all the holes and rough spots.

So, I guess I didn't feel that one coming. But it's out. And yes, I do have these days.

On a lighter note, we're off to Key West to engrave some sweet memories in our sweet littles' minds...and don't forget to check out how to pack The Perfect Picnic over at Babble.com

503 comments:

1 – 200 of 503   Newer›   Newest»
Heather said...

many hugs to you as you dust yourself off from the bus. my son is 8 and has autism and that bus still rolls to my stop every so often. Stupid bus.

cristina said...

Hi, I just recently started following your blog.
You have an amazing attitude and I love reading your posts. I have 2 boys and sometimes knowing that I will never know what it's like to have a daughter makes me very sad, but like you said, I have 2 amazing little boys and they fill my heart and I'm blessed
Your little girls are beautiful

Anonymous said...

Ahh the twists and turns of life. We never know what will happen next but "loving your littles" is so instant the moment they are born - an unexplainable feeling you can't know until it happens to you.

And can Nella get any more beautiful?

Have a great trip to Key West - can't want to hear about it!

Sue

Alicia DiFabio said...

I love how you put it: there are a million things you'll never know. this is so true and i never thought of it that way. Life sure is what it is...and the examples you gave of fatherless families and medical illness really keep things in perspective. my daughter is now 15. We have accepted things,and as they get older and less small and less "cute" and more big and "different" compared to other kids,things get more complicated for sure. the bus never stops hitting me...but the bus hits moms of typical teens too and there are things i'll never have to worry about with my Carlie: sex, drugs (other than anti-convulsants), broken hearts, breaking curfew.... hey everything has an upside:)
Have fun in Key west!! I cannotWAIT to see the photos bc iknow as usual they will be brilliant!! Again, your posts have both touched and inspired me:)

Mattanja said...

She is just perfect! And thank you for sharing...

J said...

Lovely post! Thanks for sharing! very raw & real.
I have found other parents of kiddos with DS to be my greatest resource to those kind of questions: "is this typical? is this DS?" Those internet searches can be quite scary...especially in the beginning.

..Soo.See.. said...

Huge hugs in your moments of bus-hitting. But high-fives for being so strong! xo

Randi said...

Hello
I came over your blog when I was google...whaterver that was...(sorry for my Norwegian English ;) and you capture my interest.
First I think..ohh.. just a another happy Americana family...happy, pretty, and smiling family...cute children...and all is sooooo glad.
Well, I read, I cry...and understand that I was wrong.Not that your aren't happy, not pretty....but your life is not been that simple.

It took me a while too see that your princess has Downs...she is soo adorable and cute.

In my daily work I take care of people whit Downs. It gives me a big pleasure, and I has learn so much from them....learn about myself.:-)
It is not easy to have i child whit Downs..A friend of my said that they will always had a child...there never will bee adult...he is always a child. A child on 5-10 years.

Lucky wee has com a long way, too day they goo to work, party, lived like all other people....well, they do that here I live. They has there one flat..friends....go too school.....and you know..like every other young people.:-)

I never forget your story about giving birth too your very special baby.:-) Thank you for sheering so much of your self. I think many people will find comfort in your story.


I hope you can forgive my bad English.....
Wish you a nice trip.

Randi from Norway :-))

Eva Marie said...
This comment has been removed by the author.
Carly Findlay said...

I've been reading each post of yours.
Nella is so beautiful. I am enjoying seeing the progress she is making. Thank you for sharing such personal moments in your life with us. I know there will be good days and bad days for you - I am just so pleased you have a supportive family and a wonderful blog readership to help you through.

Sarah said...

I had never thought about the choices thing until you typed that! I have been feeling a little melancholy because we have 4 kids under the age of 6 and after my last one was born, I made the decision to have a tubal. But now she is 7 months old and I get a little sad thinking she is my last baby. But you are right, there are alot of things I will never experience and having 5 kids will be one of them. and that's OK. thanks for putting things into perspective. you are a very strong woman!

Anonymous said...

kelle.
I love my children with every fiber of my existence-they are adults now - but I have to tell you that I have awakened many many nights in total blown away anxiety gasping for breath worrying about their safety, what if's and just about. everything else I could think of-many times I thought that I shouldn't have been anyone's mother-I loved them too much! But you get through and the rewards are many and your life is so complete-I still worry and I bet if you spoke with Poppa he would agree -the worries are many but the rewards are so worth it!!!!!



I

Charbelle said...

While I don't have littles I can appreciate the reminder to be thankful for my own custom made situation as hard as it is right now :)

Jennifer said...

I whole heartedly agree, parenthood is hard. It's the hardest thing some of us have ever face in life. God deals us all a different set of cards... I believe it's how we deal with ("play") those cards that makes us grow (or not). Peel away, mama. There's something refreshing, freeing, and therapeutic about being real...being ourselves...and growing! HUGS

littleharves said...

hi i'm anne from tasmania, australia, i had a birth experience very much like yours and little nellas arrival. different but the same in so many ways. i lived a life with my harvey as normal and full as i could, determined to never let his condition either define or depress us. in order to do this though, you have to to go through the hard hitting realities and acceptance every now and again, then they pass and you can get back on with happiness. it can get harder as they get older just because the differences become more pronounced, after all most newborns act the same. you do an amazing job and show great strength and courage and have a beautiful family , its obvious how much you love each other and in the end, thats all that matters xxx anne

Anonymous said...

I understand that you are going to go through bad times and I really feel for you. However, your comments comparing the disappointment of DS with your friend having 2 boys made me SO angry.

Do you think your friend went through the same pain as you did when you had Nella?
What would you say to a family who had only boys and one had DS?

As a sensitive person, I do not think that you realize what you said.

Julie said...

I understand what you are saying. I have those "what if disappointments" too. For different reasons but it doesn't make them any less disappointing.

Eva Marie said...

I have to repost because I can't stop thinking about your post.. I work with children with special needs and more specifically autism! What you describe is exactly how i know the parents of the children I work with feel.. I am in their houses weekly and my attitude is of that when I walk in their house- beauty does await and the acceptance takes time but know that their is love and nothing beats love..
your daughter is beautiful and my 1st born (jan 9 2010) would be the best of playmates with your sweet Nella
here's to real thoughts and love kelle - enjoy your trip :)

Manic Mother said...

Beautifully written and so very true. There will always be little nagging reminders of your truth over the years, but it is how you handle the reminders, and grow from them that truly matters. My 3 year old has leukemia and I often even forget that he has it until I am rudely reminded by an ER or hospital visit. There is a small truth to ignorance being blissful :)

Have fun in the Keys its looking like its going to be a hot week here in FL!

Becky said...

Gosh I love your blog.

Amanda said...

"Parenthood is hard and beautiful. Scary and rewarding. Sad and Happy. All at once."

so so true. I think from the moment you fall pregnant the journey begins. The journey of what ifs and to be honest I don't think it ever stops. But it is beautiful and the ups and the downs and all the what ifs in the world are what make it so special. Thank you for sharing your voice. You so truly echo the sentiments of so many others out there xx

Phoenix said...

Anonymous, I am a mother of two boys and one has Down Syndrome. I have no issues with what Kelle says, because it is so right. I do have a sharp pain when I realise that I don't have a Down Syndromeless son, just the same as knowing that I won't have a little girl.

You are correct in saying that the birth process is completely different for some, however it isn't about birth at the moment, it is about living with what you have.

Take care dusting yourself off Kelle, it still happens to me after 5 yrs. I have just had the most beautiful date day with my son and I am completely and utterly in love with him, he amazes me daily.

Nella is absolutely gorgeous with her bow shaped lips. Precious.

Kelle said...

Anonymous,

Perhaps you didn't see that I made the same comparison with having just girls and no boys because not having a boy can be just as devastating to someone who was hoping for one. The point I was trying to make is D.S. is as little of a deal to me as either kind of gender disappointment (which is a very small deal indeed).

Anonymous said...

Oh Anonymous,

Don't twist Kelle's words. She is speaking from her heart. This is her life, her story. She did not type this to offend anyone......She is just sharing her beautiful life with us and I, for one, love reading what she writes....

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

Can't even begin to say how right you are about parenthood being hard and beautiful.

Once you are a parent, life as you know it changes...but for the better.

Yes, we will all worry about the first time our kids will get on a school bus...or the first time they ride their bikes without training wheels...or when they get their drivers license...or go off to college. I think at every stage of their lives we will find something to worry about that will take our breathe away as we try to sleep.

But in that same breathe, the unbelievable joys that you never would have expected also take that breathe away.

And Anonymous, don't twist the words of a woman who is letting us into her world, that most of us will never know exactly what it is like to be living.

Kelle, keep writing from the heart!

Have a great time in Key West!

Leighann said...

God bless you and your fabulous family. Every child should be as lucky to have a momma like you. One who loves them deeply with every fiber of her being. DS or not, Nella is perfect. The perfect daughter for you and Brett and the perfect sister for Lainey. It doesn't take the hurt or pinching pain away, but we know that you love her unconditionally and she feels it too.
Now go create those once in a lifetime memories and we will be waiting here to hear about them when you return!
Leighann

Kelle said...

I'll try this one more time because my comment isn't showing up and if it suddenly appears a trillion times, you'll know it was important...ha.

Anonymous...perhaps you think my comparison was offensive because you think D.S. is devastating. The point I was trying to make was that my acceptance of it (very different from my initial shock and I was clear to word it carefully) is as little of a deal to me as either kind of gender disappointment (which is a very little deal indeed).

I made the same comparison with parents who have just girls and no boys.

I'm sorry if you were offended.

P-nut said...

Thank you.

J Scheppl said...

You're amazing. Thank you!

Jessica said...

You are so candid and I admire you for it. Enjoy your trip. We honeymooned in Key West and can't wait to make it back!

lynxymama said...

kelle, this is really beautiful and so well put, thank you. i was blessed to have a 4 hour long conversation with one of my childhood friends this past weekend and we talked about so many of the things you write about here, mainly, our vision of what we wanted parenthood to be and how much more difficult and beautiful it actually becomes. many hugs to you and your beautiful girls.

**and let me just say, this mom of 2 boys started selling vintage dresses on etsy to satiate that "i NEED to buy frilly dresses" piece of me.** lol! somehow we all find our way :)

The Pigg Family said...

My friend, John, is a DJ in Key West at the Lazy Gecko. He also works at something Conch. Have a blast!! I hear it's gorgeous down there.

And the picture of Nella...breathtaking!!

Molly D said...

Thank you for whipping my butt in gear this morning...The bus hit me pretty hard this morning myself with my own issues but your post reminded of all the good that is in my life! So thank you for so boldly speaking exactly what I needed to hear!!!

Morgan said...

Wow Kelle...please know that you're SO loved by someone who's never met you! Even the posts that make me cry leave me feeling optimistic & wanting to make the most of life. I feel like I have the motivation to be a better wife & mommy after reading your blog...perspective is a great thing! Thanks so much for sharing.

Anonymous said...

Kelle you are such an inspiration!!! Your words are just beautiful!! You write from the soul and every word is a truth!!!

Have a wonderful few days away!!!

LineMarie said...

It is indeed the Perfect Picnic!!
Great article.
You're the best!! :)

Kelly said...

Love what you say, as always. You have a gift with words and emotions that makes me feel like I have been given a gift every time I read your blog. So thanks, and have a fabulous time with your family in Key West!

Angie said...

Nella'a DS wasn't a surprise to the big man upstairs. To you, yes, but not to Him. Maybe He wants you to run into His arms when you feel that bus coming. I'm so grateful you can come here and get it all out. I learn so much about myself from the things you write. Thank you for opening your lives, your thoughts and most importantly your heart. Keep it comin'! I seriously have so much love for you and your family!

Lori McPherson said...

Can't stop lovin your honesty, Kelle.

Love, and smiles
Lori Mc

A Life In Focus Photography said...

as always...you said it "just right" and shared a particular moment in your life and made it part of ours, your readers

Malisa said...

Kelle, I cannot think of a better way to start the day. Just like each person is different so are the situations we go through and the choices we make. A situation that might be easy for one person might feel like a mountain for another. My little Briella has DS yes, but that doesn't mean I worry about her any more or less then my boys who don't have special needs. I can't tell you how healing and rejuvenating your words are, thanks for sharing your life and thoughts with strangers like me!!

Kelly said...

Wow, what a beuatifully written and honest post. Someone once told me that our life is like a tapestry in God's hands. We can see the back side as He's weaving it...and it's a tangled mess of threads that look like they don't make sense. But He can see the front of the tapestry, and when it's finished we will too, and it's BEAUTIFUL. I feel like you're getting to see little glimpses in this life, and that's awesome.

Thanks for sharing your heart~
Kelly

Dianagoddess said...

Be grateful for ALL the blessings you have...there are many.

Sarah said...

Thank you for being so honest. And for inspiring me to no end. You will never know how much you have changed my life and helped me get through postpartum depression.

My favorite quote from this post is
"everyone's life is custom-made for them"

Stay strong, Kelle. Your Nella is a beautiful little being and so are you.

The Martys said...

Kelle- Well said!!! The bus comes around once in awhile, but as quickly as it comes, it leaves. Your Nella is absolutely beautiful. Down syndrome is beautiful and whatever Nella does is normal.

Amy

Anonymous said...

Anon, Kelle's just talking about the pain of not knowing or living the "other options" when life gives us our path. She ain't knockin on boys--she even says she'll never know what it's like to have a boy since she has two girls. It's just a comment on appreciating what you have and not longing for the alternative. Hope that makes sense to you now...

the three wise menn said...

We have a girly with a genetic disorder and it is exactly as you describe. In the beginning I didn't sleep well, cried a lot, and wanted the nightmare to be over. A year later I sometimes have a night where I lie and think about the "what if's" of the future, and wake up feeling it. Then my sweet little thing wakes up, and the joy that she brings helps me to push all the scaries to the back of my mind and move forward with our lives. :)

Andrea
http://munciemenn.blogspot.com

Ali said...

I love that you are so human and share this with us with such beauty and grace. Your girls are so lucky to call you their mumma. xo

Jessica K. said...

I would love to adopt a ds baby from Russia or the Ukraine one day and so i have found myself ordering literature. My favorite book so far is a book with pictures and letters from 14 moms and their ds children. All between the ages of 21 and 43. She also included the story about Holland and this following one that I love. It's gonna be kinda long, but stick to it! It is worth it.

It's about how God chooses the mom for a child with special needs:
Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.

"Armstrong, Beth; son; patron saint, Matthew.

"Forrest, Marjorie; daughter; patron saint, Cecelia.

"Rudledge, Carrie; twins; patron saint.... give her Gerard. He's used to profanity."

Finally, he passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one, God? She's so happy."

"Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it. I watched her today. She has that feeling of self and independance. She'll have to teach the child to live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you."

God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods. "If she can't seperate herself from the child occasionally, she'll never survive. Yes, there is a woman I will bless with a child less then perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word.' She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.

"I will permit her to see clearly the things I see --- ignorance, cruelty, prejudice --- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

"And what about her patron saint?" asks the angel, his pen poised in midair.

God smiles. "A mirror will suffice."
By Erna Bombeck

Heidi K said...

Life brings people different obstacles which may seem small to some and very challenging to others. Whether it be two boys, two girls, one child with downs or two children with downs, it is truly how you handle it that makes you a strong person. Thank you for the encourgement to be strong in whatever cirmcumstance I encounter.

Julie M. said...

I love the pic of Nella, she is a beautiful little girl!

2 years into the DS journey I still get 'hit by the bus' but not as frequently and not as hard. I can honestly say if I had the chance to choose between Kate with or without DS I would choose with. It still surprises me to say that but it wouldn't be my Kate without DS, and she is the most wonderful little girl, just as wonderful as my other 2 kids.

Enjoy your littles today!

Laura said...

You are so right. There are so many random things that we just can't know and it does no good to dwell on each and every one.
Oh, and just so you know- no need to google anything. I have a daughter that is almost exactly a month older than Nella (born December 30th) that does not have that magic extra chromosome and she's a jerker too. She sometimes even hits herself in the face on accident with toys she's holding. My older child, Mady did the same thing at this age. They just don't have awesome control over their large motor skills yet.
And it's ok to get hit by the bus. Everyone does. But the highs wouldn't be as high without some lows thrown in between.
Love your blog. Love your outlook on life. And love, love, love those precious littles of yours!

Natalie said...

Oh Kelle, this is beautiful. Thanks for starting my day off with happy, joyful tears. Have a fun and safe trip!

Natalie
Atlanta, GA

{Amy} said...

Kelle-
I love the way you write and my favorite; "everyone's life is custom made fir them"....so true and such a fantastic way to look at our situations and our lives. Love it! And what a sweet little thing in an adorable hat! Thank you for sharing and for your honesty!

Anonymous said...

Hey Sensitive Anonymous,
Lighten up! You are missing the point of this entire blog.
I'm guessing that anything would make you angry today.
Time to change that!
Chill out, pour a nice tall glass of lemonade, let some sun shine on your face and find a "small thing" in "your own life' that will turn your frown to a smile.

Tisha said...

kudos to you for getting up and dusting yourself off after the bus accident and NOT having to call the ambulance to come take you to the ER where have to pull out the defibrillator.

ok maybe that was taking the analogy too far...

but bus hits happen and its how we handle the post trauma that matters.

xoxo!

GraceesMommy said...

can i just say this is freaky...just this morning i was watching one of those "having a baby" shows and the mom went into delivery and in that moment i went to the "i will never feel that" place in my mind. tears welled up and my heart hurt, then i heard that familiar "feet hitting the floor and sprinting down the steps to run to momma and give her the morning love choke hold"...and i thought who the hell cares! it doesn't matter how we got here gracee is mine and it is better than anything that i could have planned on my own.

ain't life grand!!!!! love you and your blog...keep it up my friend. ♥

and to all the anonymous in the world...stop with the reading stuff into things that really are meant to be inspiring and understanding, seriously it is really getting a tad bothersome...go have a lovely ice coffee on your patio and thank God for the beauty in the world and just chill...breathe deep and know that we are all friends here and come here for the beauty in kelle's world and in her words.

Anonymous said...

If you are a frequent reader of posts over years, I think you will know that Kelle always wanted girls even before they were born so that is why is stings so much that she would compare a chomosomal disorder with having a boy. She may never know what it is to have a boy, but I don't think that would really bother her.

I realize that she probably did not mean to hurt anyone but the carelessness of her words hurt me and I'm sure that down deep, she hurt that friend too.

..and oh Poster above - thank you very much, I am quite lightened up. I admire Kelle very much and her approach to life very much aligns with my own attitude. But you know, every so often two people will not agree. Blogging is not a private activity and Kelle did invite comments.

Sunnie said...

That was beautiful Kelle...we all have so many things we will never experience or "know"...the key is loving what we do know and loving what we do have and cherishing everything little thing about it!!
Sunnie in NC

Anonymous said...

I have a daughter who turns 6 months today, and I too was rattling a toy in front of her and she made choppy grasps and started hitting her belly to get the toy. I too was worried that something was wrong, because i couldn't remember my 4 year old ever doing the same thing. I brushed that thought from my mind and told myself, if someone was rattling a toy in my face, i would be so excited to try to grab it, i might hit myself a couple of times in the belly too! :)
I just started reading your blog a couple of months ago, and i think you are amazing, and Nella IS beautiful and perfect!!

Vera said...

As I was reading your (beautiful) post, my three year old came over to me
Amelia: Who's that?
Me: A baby.
Amelia: What baby?
Me: Baby Nella.
Amelia: Whose baby is that?
Me: Miss Kelle's baby.
Amelia: That's a good baby. I love her.

They call me the boss said...

Thank you for putting yourself out there for all of us to learn from. You are an amazing writer and so self aware.

Anonymous said...

Love this post. Reminds me that you are human too! Sometimes I get intimidated because you seem so perfect, but it never lasts long because your inspiring words sweep me away. You are truly a beautiful human being!!!

Holly E. Glanfield said...

Hey Kelle,

I've been reading for a few months now, but I've never commented! Too daunted, I suppose, but I absolutely love your blog.

I had to post today though because if I can, in any small and teeny way, make you less worried, then I will.

I have a little baby boy who was born a week later than Nella, and I've been worried about him because Nella has been hitting every single milestone you've mentioned BEFORE him! I know that babies with DS typically take longer to hit milestones, so I couldn't help but wonder, "maybe Elijah is behind then..." or, "Maybe she doesn't have DS after all" but I'm not about to suggest that for real, because I'm no doctor and that would be way too presumptuous. It turns out Eli has hit every milestone on time, thus assuaging my worries on that front, but without fail, if Nella can do something, he's still weeks behind her!

Now what prompted all of this was your worry that Nella's movements were jerky and that she was drumming her chest, because Elijah does that too, except he spasmadically hits his face with his fist, while seeming totally unphased that he's doing it.

So I guess from one momma of a 5 1/2-ish month baby to another, I'd say she's doing juuuuust fine, and then some. She's beautiful and amazing, and I consider you guys so very blessed.

Thank-you for how beautiful your blog is - both the words and pictures. You continue to be an inspiration to me and all who I show your blog to.

-Holly

Anonymous said...

You know I was feeling that way yesterday; totally not the same situation, but that getting hit by a truck feeling, and then out of the blue I came across this guy's sermon...it was great. If you have some time to listen I think you would enjoy it...and he is pretty easy on the eyes too; is that okay to say about a pastor? Yikes. Anyway it's worth a listen. :)
http://generatelife.com/media/vimeo.asp?embed=clip%5Fid%3D12828531&date=June+23%2C+2010&title=Misplaced+Passion+Part+3&speaker=Ronny+Roa

mom2nji said...

Sigh.
Kelle, Well you know you have made it when you have haters. lol
I understand EXACTLY what you are saying.
I have three boys and I have those moments of realization, little pangs, when I realized I wont have a daughter. That I wont plan a wedding, hold her hand as she welcomes a baby...ect. But then I move on.
It's the same thing when it hits me that my oldest son has autism and mental disabilities. There are lots of maybe's and whatifs' in life.
We can't sit and wallow in them. Choosing to focus on the good, esp. the small things is what makes life good.
Keep on sharing. Thank you.

The Polks said...

I love reading all your post, especially this one. Thank you for being such an inspiration to all moms!! You have a beautiful life!

Rachel said...

your words are so honest, and your photos so beautiful.

we lost our baby girl at 6 days old, so I totally "get" what you are saying. But at this point I realize losing Mina was just a part of my life and now it's actually difficult to imagine my life differently. I mean, I could have NOT lost Mina, but then I wouldn't have had Charlie. I believe that our lives are on a certain path, and while they aren't always the paths that we would choose for ourselves, they are OUR paths.

Ok, I'm rambling, I wish I could articulate as well as you!

Here is a link to my Mina story if you care to read it:
http://myblogbyrachel.blogspot.com/2009/10/minas-story.html

Leelee said...

<<>>
Perspective is a grounding force sometimes, and it's that what you need when the bus comes roaring along.
My 11 month old daughter has to go for surgery next week - simple surgery - but surgery none the less.
My husband and I were in hand wringing, why us mode for a few minutes, til he turned to me and said "we are SO LUCKY. Let's get a bit of perspective here". So we chilled right out.
It's hard sometimes, because you only know and react to your own reality, but damn, it could always be worse.
Thank you so much, once again, for sharing a slice of your beautiful reality. I love my kids with all my soul, and it's this that makes that bus come a calling. -x-

Kate said...

Great post. Our daughter was born Jan 23rd - so she and Nella are just about exactly the same age. And not a word of a lie - she was doing the choppy movement thing with her arm against her bottle yesterday and I turned to my partner and said "is that normal???". We say that a lot in our house - "omg, do other babies do that???".
I completely get what you're saying about that little bite of sadness that passes quickly. With our little one, we'll never know what it's like not to have to explain her adoption and have talks about her birth parents (we love her birth parents, but it'll never be simple and easy). But then nothing worthwhile ever is.
Your blog is fantastic, I read every post and LOVE them all. Thanks for letting us peak into your world.

The Brown Family said...

My son was born just a couple of weeks before Nella and he also makes choppy movements and I remember my first son doing the same thing and so it is normal. I just love reading your blog your words are so inspirational! Thank you very much!

Molly said...

Kelle - a lot of it is the developing nervous system.

You are a beautiful inspiration to so many. There are days I forget my autistic son is autistic...and moments like yesterday where it becomes clearly apparent he is "different" from other kids. But you're right. You suck in oxygen, wait two seconds...and exhale. Because to us, they ARE normal. Their normal.

Other peoples' normal is overrated, anyhow.

Kelle said...

Anonymous, I'm sorry you were offended but I chose my words carefully, prepared for this very argument. I likened my acceptance of D.S. (very different from my initial shock) to gender disappointment only to point out that it's no big deal as anyone who's experienced gender disappointment will I'm sure admit...a bit of a sting at first but no big deal later. While yes, I wanted girls to match the boys my husband already had and was honest in my admitting that, I know parents who had gender disappointment on the birth of a girl after hopes of a boy. It goes both ways and I know if I had two boys, I'd be just as happy. My friend I spoke of is very honest and open about the disappointment she felt and I shared my comparison with her. Because she, like me, sees not a devastating chromosomal disorder but a sweet little perfect Nella, she understood the comparison completely. However, your point is graciously noted and I'm happy to understand readers a little more. Thank you!

Tatiana said...

I remember the choppy chest bagging from my little one! We called her Tarzan haha. She does not have DS, so it's probably just a regular 'ol baby thing. Enjoy it!

Have a great time in the Keys!

Anonymous said...

"If you are a frequent reader of posts over years, I think you will know that Kelle always wanted girls even before they were born so that is why is stings so much that she would compare a chomosomal disorder with having a boy. She may never know what it is to have a boy, but I don't think that would really bother her.

I realize that she probably did not mean to hurt anyone but the carelessness of her words hurt me and I'm sure that down deep, she hurt that friend too."

I just have to share that I very much agree with this comment.

Stephanie in NH said...

This is Kelle's blog, basically an open diary. The point of writing a diary is to "say" what's on your mind. If people out there find it offensive, so be it, but don't give the author sh*t about it! Read it, enjoy it (because it's KELLE'S diary you are reading!!) and move on.
Kelle, I for one, LOVE your blog! I love your photography, and the fact that you can, and do, openly share your innermost thoughts, your daily routines, and your family!
Your children (steps included) are beautiful, and I believe one day, your daughters will thank you for documenting their lives through your eyes.
Thank you!
P.S. Key West is my favorite place on earth (next to my own home!) Have a blast! If you can, drive an hour north to Marathon and visit the Dolphin Research Center. The girls can swim with the dolphins.

Kristi said...

Ive always thought...If you could put yours and everyone elses problems/troubles in a hat would you want to pick out someone elses trials or would u be hoping that you pick yours!!!
I have a little girl that is 3 now that has ds and I still have them little moments from time to time. But they are only small moments and I wouldnt want her any other way..

lisa said...

Kelle, I think it's a 6 month old thing, 'cause mine does it too. But if it IS a DS thing...she is still so beautiful and perfect...and it is so obvious that you already know that! :). Thanks for being such an inspiration for mamas like me...like us. Enjoy the Keys!

ehook said...

Perfectly written. I wish I had a way with words like you, truly a talent. I too have my little who has DS and is just weeks older than Nella. Your posts lately mirror my thoughts and sentiments exactly, it is so unbelievable and scary. BUT, so beautiful. Enjoy your trip, and thanks for being so truely honest, it is wonderful:)

ehook said...

Perfectly written. I wish I had a way with words like you, truly a talent. I too have my little who has DS and is just weeks older than Nella. Your posts lately mirror my thoughts and sentiments exactly, it is so unbelievable and scary. BUT, so beautiful. Enjoy your trip, and thanks for being so truely honest, it is wonderful:)

GraceesMommy said...

for those who do not get this post...kelle was not comparing how much greater one persons pain is over another. she was saying we all have this sense of pain..my pain over not being able to have a child is not greater than someone who has a child with ds..it is just my own personal pain and i still feel it..but in our own personal pain we search for own beauty, our own silver lining..mine was adoption. now some would say that i should no longer feel that pain of not being able to have a baby when i am raising a beautiful girl..but every now and again it comes at me, i feel the "what might have been"..and then i get momma loving from my girl and i know that this was meant to be.

kelle your words inspire and i so get what you wanted to share in this post. it was a way to start the day. now lets all go have a lemonade or iced coffee on our patios and seek the beauty in each others lives. we are all friends here.

Megan said...

Kelle, You keep me honest with myself. I love every post you write, I get so giddy inside when I log on and see you have a new post up. You write so beautifully and you "speak" to me in every post. I cry and laugh through them! Your family is so beautiful, and that little Nella I want to give her a squeeze so bad! Have a fantastic time in Key West! Now i'm off to read the perfect picnic!

J Scheppl said...

Thank you Kelle, for being as amazing as you are!

Esther said...

Beautiful Kelle! Your post reminds me of this quote:

Making the decision to have a child is momentous. It is to decide forever to have your heart go walking around outside your body.
Elizabeth Stone

PhotoPuddle said...

I have just discovered your blog and think it's amazing. Your photos are fantastic and your children are just
beautiful.

Cathy said...

I'm currently pregnant with my second son and our last little. And I'm a huge fan...and not at all offended by your comparison. I love that I'm having two boys. I love that they will grow old together and have each other to be buddies for the rest of their lives. Before my first son was born, I wanted a girl. Desperately. I didn't know what I'd do with a boy. Bugs, dirt, scrapes, messy bathrooms. It freaked me out. Are there days that I wish for a girl...ABSOLUTELY! But to your point...I am so blessed to have such a wonderful husband, the sweetest little boy that says 'I wuv you mommy" and another healthy boy on the way. I get to be the queen of the house!! And feel so blessed.
Your blog is a blessing and it keeps me feeling like the luckiest person in the world. And one day if I'm ever down that way, I'd love to have a cocktail! Thanks so much for your beautiful heart and soul!

gillian said...

This post reminds me of a time that I was freaked out that my newborn daughter might be autistic - because she refused to make eye contact despite my best efforts. Turns out she was just fascinated by the frames of my glasses. ha. Man, did I lose sleep over that!
(and now, she's recovering from a brain injury, and has much bigger issues than autism would have brought us - but there you go)
And FWIW, I have friends who were deeply saddened by the whole gender issue - truly morning the daughter they never had.
Great post!

Vonda said...

I'm a little over 11 years into this journey and it still hits sometimes. When our children with Ds are babies, we do worry if things are "normal", or whether it's the "Ds". Noah used to hold his left arm up in the air and stare at it for 20 minutes. Why? I have no idea, but it was cute as can be!!! And he would make this "STIFF" face and grind his gums and put his arms straight out all stiff and look mean. I asked the therapist about it and she said that our children with low muscle tone will do all kinds of things to make them feel strong. So maybe that is what Nella is doing. Pounding a toy on her chest makes her feel strong, makes her aware of her muscles!!! When I look back at those little wonders now I have to laugh because they seem so trivial compared to what we deal with when our children get older. Now it's "will he be invited to any birthday parties", "will he have any typical friends", "will I end up in jail because I beat up some 10 year old that made fun of his speech", "will I end up in jail because a bunch of teenagers called him a retard". Believe me I've pictured myself in jail a million times and just can see myself on the headlines of the Nancy Grace show "mom beats the crap out of a minor for bullying her child with Ds". It could happen, I'm serious!! I love my son, love him with all my heart, just as I do my daughters. But this love is different, it grabs deeper. I thnk it's because he needs me more, he probably always will and he loves with every fiber of his being. He MEANS every one of his smiles, and his hugs and I get 1000 or more a day!! I can't even count how many times a day he says "I wuff you", and he means every one of those too!!! :) I would not trade him for the world, but I do have to say that I feel like those "hit by a bus moments" will continue until the day I die, because he is my heart!!!

Anonymous said...

DS vs. having typical boys? Yeah, sorry but there's no comparison. Just wait until the surgeries, all the interventions (why isn't E/I in your house yet?), the fights with school districts (IEP's, decent therapists and so on)regarding what is an appropriate education for her. Having a chid with a disability is not all sunshine and roses like you want to portray. Wake up hon. You are cleary soooo image consious and it is so obvious that you are angry you don't have the "perfect yuppie" family like you envisioned. Yuck to this blog.

Anonymous said...

I guess these choppy movements are normal for a lot of kids - DS or not.
I have twins and one always made smooth movements and the other one was a bit ... choppy.

@anon: yah, Kelle always wanted girls. So what? I'd bet that if she'd had boys instead, she would have treated them with the same love she has for Lainey & Nella. She didn't compare boys to diseases. Only said that there are always things you will not have and may wonder what the alternative would be like.

The Sanchez Family said...

I was wondering how things were going in terms of how DS fits into your life so thank you for this post. I love your blog and I'm inspired by you and I look forward to following your journey as Nella grows and becomes her own little person. I think that you are a wonderful role model to so many people but most especially families with children with special needs who so long to be considered a normal family. Just because we have a child with special needs should not "stereotype" us...we are just like any other family with ups and downs like you said...happy days...sad days. I think you are really going to help SOOO many people adjust and see it's just a NEW normal when you have a child with DS or any other special need. Thank you Kelle!

Anonymous said...

I appreciate this post. I have 2 boys, both with autism. It seemed in the beginning that we were the bus terminal, with buses coming in every direction. I was sad for a very long time and I missed so much.

I am now doing what you mentioned. I am seeking others living the way I want to live. Coincidentally, that's how I found you. Thank you for your frequent reminders to live life to the fullest.

Heidi said...

love you so much.
have fun on your little getaway!
call me on the way there. xo

Kristine said...

Giant hugs to you today. Though I know you have dusted yourself off and have moved on. It's what is so admirable about you. You are so right that every mother gets hit by the bus, for different reasons. Funny enough, I had my own moment last night and it hurt so very deeply. It's that parenthood thing. And we do have to have tough skin. Interesting too how our littles are the ones that heal us.
Have a great time in Key West.
xo
Kris

bb,tonya and cam... said...

i know just how you feel...and i love this post. I was thinking just the other day...about the fact that i am able to 'forget' that my little guy has that extra chromosome...i forget it and then i notice it's been forgotten and i remember for a second....i feel it too. Nella is doing so great and is absolutely gorgeous!

Kristin said...

My Andrew is just a few weeks younger than Nella, and he has been making the same types of movements the past few weeks. No DS here...just a little bundle of energy trying so hard to copy his big brother while he watches him play that he turns into a spaz! Oh, and just my two cents...for some people gender disappointment is a huge issue...I am absolutely head-over-heels in love with my boys, but I long for a little girl and that bus hits me quite frequently. So while I can see that my longing and actually having a child with special needs are different issues...I get what you were saying...everybody has their own busses to deal with, no matter which one is lighter and which one is heavier.

moiproject said...

I hope you feel better Kelle! Thanks for sharing... in this life, NO ONE is perfect - even US, mommies... You do your best and move on... we are humans and we sometimes - get hit by buses! It will pass and you will be back to your fabulous self! Enjoy your lil holiday... can’t wait to see your pictures!

Anonymous said...

I am surpsied that you did not know she was D.S. before she was born. Did the Alpha Feta Protein test register normal? Odd. I thought they coud tell 100% of Down Syndrome before birth pretty much through that test and through suspicious ultra sounds.

babypelly said...

Thanks for this post! I emailed you a few weeks back after our DS baby (abby) was born and am still having days like this more often than I have "Italy" days. I jump on here and read your old posts a lot.

Good to know I will get to where you are sooner than later - and glad to have a great role model in you!

- Melissa :)

Chelsey said...

This is a beautiful post. Sweet Nella is changing the world.

craftyashley said...

Love your blog. But don't comment that often. I just thought I would let you know, I have a little boy who was born a week after Nella. His movements are still quite choppy. Hope that helps with one worry!

Kmarie said...

Thank you so much! I needed this post. I was just getting down and feeling like I could not get it together like you always do- despite tough situations. This post was the MOST encouraging! The most inspiring yet. I love everything you say but this one hit the right spot. I have never felt more validated in the blogging world.
And i liked your comparison- every life is so different and has it's "what if" moments- no matter what the level. I liked how you deal with that.
Thanks for your vulnerability and honest thoughts. It was quite positive. No one has it all together ever- that is why we are all here to uplift and inspire. I have had many of those moments too.
Enjoy the rest of your day and do not worry too much about the opinions of others. Everyone has a different understanding of situations and sometimes it is on a completely different level than both parties meant. Communication is tricky. It is hard for either person to be understood fully from their own experience.
Your experience this time- for me- was incredibly relatable. Thanks.

E @ Oh! Apostrophe said...

Your blog is always so inspiring and beautifully written... I hope you never stop writing it!

Jen said...

I was so happy to see a new post!! Thought we would not be getting one until after Key West. Anyways, just last night my husband held our little in the air and told him he loved him just the way he is and he wouldn't change him for the world. While we are "aware" of his DS, it's something that lurks behind. He is a baby who sleeps, eats and poops. Most recently, he smiles huge whenever you look at him and coos when you talk to him. He is a tiny human being and not at all that different from his sister when she was his age.
Well, I hope you take the comments left here in stride. I'm totally picking up what you're throwing down. Unfortunately, it doesn't look like everyone does!!

julia said...

Wow! How beautifully written. I am ready to start my day now and follow into your footsteps, enjoying the small things scary moments and all!

Thank you!

Andrea and Jeff said...

Your posts are beautiful and inspiring! Thank you! I just welcomed my second little girl into the world 6 days ago and as I work through some baby blues, you reminded me how precious life is and how to always look on the bright side. Your girls are gorgeous and I love your blog. The music is also a great touch! Thanks again!

Looking Up said...

Funny that you should post this today, as I myself, just got "run over by the bus" this AM. Today I took my adorable, intelligent, happy 19 month old (who happens to have DS )to a music class for the first time. He was the only "special" child in a class full of typical peers. Josh did great. He was attentive & engaged the entire time. Playing his musical instruments with the rest of them. Why then, did I cry the entire way home? It wasn't Josh, it wasn't the other kids, it was the other moms. Their "too frequent" gazes in my son's direction. Their well-meaning compliments, "Oh your son did really well today, He was really able to keep up with the others", & "He seems so bright". Well, those nice comments, they cut me to the core. It was a reminder that my son is, in some ways, different. The majority of the time, when I see my son....he's just that....my son. But ever once in awhile, he's my son with DS. And sometimes it hurts. Thankfully, those times quickly fade away when that adorable boy flashes his big grin my way. Then I realize he is perfect. Wouldn't change a thing!

Becca said...

You've got insight that many people on this journey don't get so early.

My daughter, Samantha, my *only* child (who will remain as such), has Down syndrome. She is 4 years old. She is beautiful. She is smart. She is *amazing*. She is my life. Down syndrome is not my life.

And yes, although our acceptance came very early and easily for us, that bus still comes along and knocks me flat from time to time. But picking myself up and dusting myself off also comes easily for me.

Blogging is my way of dusting off and sorting those feelings out. I'm glad you have that, too.

Anonymous said...

Another great post Kelle!!!! Have a great trip! Even though I don't have kids yet I totally get what you are saying. I have always wanted a little girl. If I happen to have a boy Of course I will be greatful and love him no matter what but that doesn't change the fact that I would love to have a girl.

Looking forward to the next post!!!

Chrissy said...

What I adore most about reading your blog is witnessing how amazingly devoted you are to these little girls. They're so lucky to have you as their mommy! :)

Corinne said...

I think you hit the nail on the head with this post. We can morn for what we will never know, a little bit, but ultimately we're given what we're given. And the trick is to accept it with grace and find the beauty that lies in almost any situation.
Thank you for this :) Have a wonderful time in the Key West!

Miss Erin said...

I triple love your pictures. You inspire me to keep taking pictures with my crapy old camera. Your little girls are 2 cute. I have worked with adults with DS and I can tell you that they are the most care free happy people I have seen. People with DS might look a little different but they are very caring.

mommy of two girls too said...

Kelle,
Beautiful post, so real and true! These are feelings that all Momma's and Daddy's go through, whether or not they have a little one with special needs. I think we have all been hit by a bus one time or another. But, our littles are so precious and from the second they came into this world, they are loved. That is amazing- huh?? Little Nella is just beautiful! Have a nice vacation, Kelle!

~Deanna

Joanna and David said...

Dear Kelle - I read your blog all the time and your pots are all so beautifully captured, so magically written and sometimes so perfectly pieced that I forget you are a real mother. Not in a negative way - but in a "she has it all together" and "I wanna do that" kind of way. I want to live on the beach, take gorgeous pictures of my little boy, and wear funky shoes and bright colored nail polish. You are captivating and easy to want to live vicariously through - I know I'm not alone in feeling that. But your post about Nella's birth, and the series to follow, and the one you wrote today - those are so real it makes my eyes well up with tears and my stomach do a weird twisting thing. So often I feel worlds apart from you - but not when I read about that "hit by a bus" feeling.

My Jet - now 13 months -was born with Spina Bifida. And most days we feel so normal, so full of life and love and thankfulness for all we have and how precious it all is. But there are those moments. Those days. Those "hit and runs". And it never gets old to have that gentle reminder that I'm not alone in having those days. Yes it makes me think - and sometimes makes me sad when I otherwise wasn't thinking about it - but every time I do I feel stronger in the end. I will never know what Jet would be like without SB - but I cannot imagine my life without him just the way he is. Because as many scars and surgeries and difficulties he has already faced and will face...he is more perfect to me than any baby I ever imagined. He is my dreams coming true every "good morning baby" and sweet kiss goodnight.

So I just wanted to let you know that out of all the ways you amaze, enchant and inspire me - the one you never prepared for and the one nobody would ask for...is the one that mirrors my life, strengthens heart and enriches my soul. Thank you. God bless. :)
~Joanna

Maureen said...

I wish Anonymous would go away... it takes away from the beauty of your writing, Kelle.... thank you for your inspirations... Your family is beautiful and lucky.

mrssuelee said...

I just started following your blog. Thank you for those honest and sweet words about how tough, and yet how rewarding parenting a child with special needs can be. I constantly feel the sadness and the blessing and sometimes both simultaneously, while raising my kids...especially raising my son, who has a rare genetic syndrome. So I appreciate your thoughts and your reflections on this crazy journey. Your girls are absolutely beautiful!

mrssuelee said...

I just started following your blog. Thank you for those honest and sweet words about how tough, and yet how rewarding parenting a child with special needs can be. I constantly feel the sadness and the blessing and sometimes both simultaneously, while raising my kids...especially raising my son, who has a rare genetic syndrome. So I appreciate your thoughts and your reflections on this crazy journey. Your girls are absolutely beautiful!

Dasha said...

Kelle, what a beautiful post. I love your blog so very much, and I totally agree with the point you are trying to make. And the anonymous commenters making all the insensitive statements I would say they should stick to the old truth that unless you have something nice to say you should not say anything at all. As to the choppy movements, my baby girl is 6 and a half months old and does not have DS. She makes those all the time - their movements are imperfect, they are just learning, and that's the beauty of it. Your girls are beautiful, both of them, and Nella is such a blessing, I am completely in love with your family!

Emmina said...

Thank you Kelle. This post really means a lot. I found out 2 weeks ago that I am pregnant, and I'm a bit freaked out just at the thought of being a parent (although it was planned!)... Then they asked if I wanted to do a test to check for Down Syndrome and other similar "chromosome disorders". My question was 'why would I want to do that?' The response I got was 'because if there's something wrong then you're still in time to terminate'. I thought of you and Nella and your happy family and wanted to cry right there in front of the doctor (here in Italy they don't have much bedside manner....). Needless to say I'm not interested in doing the test, as it would make no difference to my happiness or to my fear. Thanks for sharing your experiences - it meant a lot before, but now I'm about to embark on the parent journey myself, it means even more...

Springroll said...

What a beautiful entry...and you're right, most of those "hit by the bus" moments are inherent in MOTHERHOOD, not just being the mother of a DS child. After suffering from infertility for over three years, and then finally having our beautiful son after 4 IUIs and 3 IVFs, I spend (I think...) and inordinately large amount of time worrying about him....and I know I shouldn't. But it happens, doesn't it?

To "Anonymous" - It is clearly apparent that you are having difficulties dealing with your life circumstance. Kelle simply chooses to embrace hers in a positive light and make the best life that she can for her daughter. Shame on you for spreading your negativity! If you are not comfortable reading this blog, then don't - but do not leave your bitterness behind for everyone else to sample!!

eliyafa said...

I appreciate so much what you wrote, it's just plain unadulterated, beautiful truth. The truth we have to face when we learn about our babies. You brought tears to my eyes as in your words I could hear my own voice.
Thank you for your truth

Sage said...

Kelle, this post really resonated with me. We all have those moments, those days... but I like how you see them, how you explain them... your perspective on them. For me, it is not knowing if I will have a second child. Not knowing if my marriage can weather these days. Not knowing how to find the most love and happiness with the cards I have been given. You give me perspective and inspiration to make it the best. I thank you for that. xo
Sage

Kulio said...

Kelle,
I smiled through the Anonymous comments - I'm glad you left some up, they were truly passionate! haha But then again, I'm the one who bursts out laughing when another driver gives me the finger, or when I see an amazing public temper tantrum. People are so different, I feel like I go through life staring at them in secret awe!

Those posts from anon are to me like the awesome hairy plumber butt I saw at Lake Lansing yesterday. I couldn't tear my eyes away!!! Misguided but mesmerizing!!!

You wrote what you wrote with great clarity, and I knew exactly what you meant and immediately compared it to my own "things that will never be but it's okay" - everybody has them, and being able to connect like that to your blog is what we come back for.

You are not image conscious, that's why you let us see your dirty laundry and your hurts. And anyway, we NEED you to be beautiful and wear awesome shoes! There is no way you can be honest in this blog and not offend somebody, no matter how pure your intentions. I think it's a really good sign. Anonymous will be okay, and you gave her a safe place to vent here - I like how most of your readers weren't cruel back to her, but pretty decent. That says something too :-) Love you.

MNMama said...

Kelle,
I've been following your blog for a few months now. About the only one I follow and I play "catch-up" when I finally get a chance to read it all. My sister emailed me the link to Nella's birth story, and ever since then I just want to see how you and your beautiful family are faring. Amazingly. Every time I come onto your blog for an update, you just blow me away with your beautiful outlook on life and your pictures. Oh how your pictures inspire me. What I would give to have your skills - words and creativity. :)
My little girl, now 27 months, was born with a cleft lip/alveolar ridge. Many of the emotions, questions, etc that you have written about, I have also felt. Now her cleft is purely cosmetic, so while I had many of the same questions, I truly don't know how you've felt. My little peanut has had one surgery already (at 11 weeks old) for her lip repair, and will probably have 3 or 4 more in her lifetime (around ages 4, 8, and 13 for sure - possibly more?). Your birth story had me in tears...mostly the questioning of love. Will everyone love her even though she's different? Will I love her as much, even though she's different? I questioned everything I did those first few months. And the why's, and the what ifs and the what nows, and the wondering exactly what it means for your little peanut.
You're inspiring Kelle Hampton! Next time that bus comes around...tell it to move onto the next stop. :)

CLewis said...

I think this was beautifully put. Don't mind the people who read to much into the comparison...I totally shook my head in understanding when reading your comparison to your friend with two boys. I just had my third boy and sometimes it will just hit me. The other day I read my cousin was expecting a girl and just started bawling. I went to that place where I thought of all the things I was missing out on without a girl. I don't normally go to the place...I didn't stay there long...but I went there for a moment.

Is this the same as what you have felt in having a DS child, probably not. But your point, as I am reading it, is that we all have those moments where we realize that life isn't what we thought or hoped it would be. Some peoples moments are bigger than others and for good reason. But the what we can all hope for, and what I think your blog beautifully displays, is that there is beauty in everything. Whatever we have been given in this life was meant for us. We can look at what we are missing or look at what we have been given. Thank you for putting that into perspective.

Melissa M. said...

You WILL never know a Down-syndrome-less-Nella, but you WILL know what it feels like to parent a special child!
When I was in high school, my math teacher called my mom and insisted that I have my eyes checked because she was convinced that I couldn’t see the chalkboard. My mom took me to the eye doctor, and I was given a prescription for glasses. Having never worn glasses before & not wanting to start in high school, I stomped my feet and pouted all the way to the office to pick them up. When I put on my glasses for the first time, I was amazed that I could see each individual leaves on the trees. I said to my mom, “Can everyone see this way??” She answered thoughtfully, “No, they can’t.” Having a child with Down syndrome for me is like getting glasses; I stomped my feet and pouted into special motherhood, but because of it I can see the world in a new way!
The other day I took my son to a doctor’s appointment, and there was another mama in the waiting room with a daughter in a wheelchair and on a respirator. When I walked in, I saw the mama and wondered if she had had PT already this morning, how she had fed her child breakfast, and wondered how she had gotten the little girl in from the parking lot. I beamed at the mama and sat right down to chat about the holiday weekend, the unusually cool weather, the sale at Baby Gap. I am a little embarrassed to say that before I had my little man, I probably would have smiled quickly at the mama and looked away, feeling sorry for her. Instead, I basked in the strength of the mama and in the beauty of the daughter. And, I related to them. I knew that the mama next to me was one of the lucky ones who has learned to value all people & to love unconditionally.

annie b said...

Kelle, I am so disappointed in some of the comments above, especially the ones that come after your VERY gracious (and for the vast majority of us, unnecessary) apology.

You will note that a lot of us "friends" are incensed that you have been criticised for speaking from the heart. It's what you do best, it's what you're known and appreciated for, please don't change or feel you have to "pretty up" what you're saying.

We love you and your words whether you're rockin' it out or struggling against the tide. Chin up babe, you're perfect as you are xxx

Anonymous said...

@anon July 6, 2010 8:28 AM: Kelle once wrote that she didn't have the test 'coz she wouldn't have done anything differently.

I don't get why people are offended by Kelle obviously enjoying life. Come on people.
And DS is not all about IEPs, fighting with school districts, setbacks ... DS kids are first & foremost kids!!! Let her enjoy Nella just as she is, the fighting for rights stuff will come early enough and I feel that K&B will handle that well and fight for their bunny.

And btw, IEPs and schools are not all bad ... my friend has a boy with DS, he's now 7, and she has been incredibly lucky with all the support she gets.

Sheila said...

Oprah interviewed Sidney Poitier several years ago. He said something profound that always stuck with me. Sidney Poitier has 6 children ~ all girls. An audience member asked, "Do you wish you had a boy?"

His response was, "You may have a preconceived notion of what you want, but as soon as your child is born, you can't imagine the world any other way."

His statement rings so true to me. I can't imagine the world any other way than with my two girls. I also can't imagine it without my nephew who has special needs. The world is richer with them in it.

alohakeiki said...

My little Addy Sue was born on New Year's Eve just before Nella. It sounds like Nella's actions are normal. My little one is doing the same things. I was actually a little jealous of how well Nella can hold her head up when on her belly. Our little peanut just gets mad and tries to roll back onto her back or screams loud enough that someone does the rolling for her. :)

Eva Marie said...

wow readers come on - a blog is written from ones perspective and yes npot everyone will have the same view but this is her space and shes expressing herself - lots of people have gender disappointment which in itself is hard to admit - just because she has a child with DS doesnt mean she can't love life.. get over it people
amen Kelle - thanks for speaking it from the heart

Marti said...

My brother leaves for Afghanistan this Friday and I wake up everyday and that bus hits me. Buses suck donkey balls but we need them to put things in perspective. My brother and I have always been close but have grown even closer now. I've already cried a river over his deployment and I'll cry another one on Friday when he boards that plane and that bus is gonna really hurt. But I am strong and he is strong and everyone else he is leaving here is strong so we will be okay!

Thanks for your inspriring words.

Andrea said...

You have an amazing attitude on life.

And yes, I think I know what you are talking about (the hammering the choppy movements) and I think it is normal. My 6 month old daughter does this all the time.

Have fun on your vacation and thank you for posting so much.
Reading your blog always kickstarts my mornings...

Melissa B. said...

The "special needs" bus hit our family too. Our 6 yr old son has Cerebral Palsy.....& he is the LIGHT of our lives. I DO spend some sleepless nights worrying about his future...OUR future. But for the most part, I rejoice in his happiness & all of the happiness he brings our family.
You are TRULY an inspiration & I am SO HAPPY I found your blog....it really gives me perspective & can cheer me up even on my worst day.
-Melissa

Kirstin said...

Aw, rubbish the bus got you but it sounds like there were some friendly passers by ready to heave you up and dust you down. It's okay to have bad days, if you didn't it would be harder to appreciate the wonderful, small things.

Ps that hand chopping thing is familiar, fairly certain my boys did something like that too so it may well be 'normal', whatever THAT is !!

Catherine (WA in PA) said...

Oh Kelle, you are fantastic.

Nella's story launched this blog into thousands of hearts and people come back for your beautiful photos and inspirational point of view. I think we forget what a truly great writer you are. I've always thought, take away the pictures and the music that you put up and this blog would still have that sparkle. I love how you write and I love how you put it out there.

It's been a gift to watch Nella's growth and the transformation of this blog over the last couple of months. To see how big she's getting and the different smiles she has, and to look at her pictures and see Lainey's face in hers is truly remarkable. I don't see Down Syndrome, I see a little girl who has the same hungry-for-life eyes that her big sister has.

And to read the pain and rawness that you felt in January, and then to see you uncover the beauty of your little girl---its priceless and you'll never know how blessed your readers feel to be able to witness that.

Kirstin said...

Grrr some of today's comments are making me soooo cross. Someone clearly has something to get off their chest but this is really not the forum for it! This is a love fest don't you know, somewhere for Kelle fans to share their passions not only for this blog but their own lives. We are right behind you Kelle and co. Xx

jeana said...

I really want to put myself out there and say how much I appreciate your honesty. You say so much of how I feel. I've had those gut-wrenching moments of "never having a girl" and the same ones with having a special needs boy. But, you are right, we chose to pick up and live life, because...well, why not? And yes, some days are so bad, they feel like they consume me, but they are far and in between. Our son doesn't have ds, he has autism, but if you EVER need anything, I'm just a click away and would love to chat, vent, worry, celebrate together if needed. I know you don't know me, and am sure you have lots of support, but I'm here =]

Tara said...

Such a beautiful post! Gosh, I'm all teary eyed now. I love how you express yourself in a way that we can all relate to so easily. I know that hit by a bus feeling! Thank you for the happy moment today.

Vonda said...

To Anonymous that mentioned that having a child with a disability isn't always sunshine and roses....um is ANY child always sunshine and roses!? I am with Kelle when it comes to sharing all of my children's milestones, joys and positive things. Who wants to share the tantrums, whining and bad times? That's for families to deal with, not something you really want to blog about, unless you want input on how to cope!!!

And to anonymous who suggested you didn't know Nella had Ds before she was born. Well what would THAT information be used for.. an abortion? I didn't know my son had Ds before he was born and I'm glad because I would have done nothing but worry for my entire pregnancy. Not all mothers jump into amniocentesis to find out that their child is "perfect". Not all mothers need perfect balance and the "perfect typical family" to function. Yes I was upset when I learned my son had Ds, but you take what God gives you and you go with it. We could all look at Ds in a negative way, scream, cry, spend the rest of our life in misery, but what would that accomplish? We all have 1 life to live and our children were BORN with Ds, so it's up to the rest of us to make their lives the best they can be, not to live life wishing the Ds would go away. My son has taught me more in the 11 years than anyone else has in my life. He has taught me unconditional love. He has taught me that even if you are given something that you THINK you can't handle, go in all the way, make the best out of it and you will be surprised at how much you are rewarded in the end. It's a shame these anonymous people can't have a child with Ds in their lives because I think THEY are the ones that need to see the positive side of things and leave those of us who accept and move on alone. I need to go now before every vein in my head explodes. Love you Kelle!!!

Anonymous said...

I wish to distance myself from some of the ugly posts also posting as 'anonymous'. Those are not me.

Thank you Kelle for your reply and your graciousness. I sure I have inadvertently offended people before.

hayley said...

i hope this doesn't sound weird, but when i see photos of nella, i rarely think she "looks like" she has DS. not that it makes a difference. but your choice to not focus on it has come through to your readers. we forget too :)

Lisa said...

Kelle- I just did a search on DS because I wanted to know more about what you and your family are dealing with. I've seen many children with DS and the one thing I've always been told is how loving they are and aside from the obvious facial features and developmental delays I didn't know what else they had to face. I forget that your little Nella has DS also because those of us that follow your blog see her as a sweet baby and have been watching her grow just like any other baby. After going on a medical site that listed the long list of possible medical set backs for those with DS I had tears in my eyes. Then I went to NDSS and watched a bit of "My Great Story" and again had tears in my eyes because of the hope that it gave for a wonderful future for your Nella. Her life will be different than what many of us know but you have given her a beautiful beginning and I pray that her path will continue to be filled with love and acceptance.

I learned that there are different forms of DS. Does Nella have something other than the "typical" trisomy 21?

Hugs,
Lisa

KWQR said...

Good Lord girl... you sure can write!!! In our family we call them "DS moments"... those times it sneaks up behind you & throws you down hard. I am 4 years into this adventure & have those moments from time to time. It's funny though they are never in the situations I thought they would be (IEP's, evaluations, playing with typical kis, etc.) They are always random moments that take you completely by surprise. But that's all they are, moments. Cause life keeps moving forward & something else happens & sweeps that moment into a different one. (Oh how I wish I could write as eloquently as you!)
Thank you for sharing the many sides of your life, the good, the bad & the laundry.
Big love & safe travels,
Kate

Anonymous said...

You'll get people commenting on here who don't understand this blog. Don't let it get you down Kelle. Keep up the inspiration, because we love you and we need to see it. Seriously, you have changed so many lives with your perspective. xo

KWQR said...

Oh, and when you find yourself asking if something Nella is doing is typical, DS or just Nella... talk with your EI specialist or other therapists. Our team was such an amazing resource for info & support. It really helped us.

kcolquitt said...

Choppy chops is the name of the game in Lulu land! She's nearing three months, and still will smack her own self right in the face. And let me tell you, my Peapod, when she was learning to crawl, would crawl herself right smack into the wall...and keep head butting it, thinking she could get through. Down syndrome? No. Normal? Hell no. All ALL kids are gonna do some crazy things, extra chromosome or not. I seriously don't believe in "normal" because if I did, I'm afraid I'd be missing out on it. Because even though I don't know what it's like to have a baby with DS, I sure don't know what it's like to have a baby (or kids for that matter) with "normal".

courtneywrites said...

Stunning, Kelle. Thanks for writing.

Brittany @ GreyGreyDesigns said...

Amen sister. We made a conscious decision when Greyson was diagnosed with TSC that we would not treat him any differently. And yes, the bus hits you every once in a while, but you realize that life goes on and there is ALWAYS someone, somewhere who has it so much worse than you do. We visit St. Jude often for one of our doctors, and I always thank God that Greyson is as healthy as he is on a daily basis, because THOSE parents/kids are the ones who are suffering. We don't have any problems compared to them.

Vanessa Washburn said...

Beautiful post!
it's hard to live life without considering the what if's... but life is much happier when we let them roll away quickly and try not to look back.

Lisa Comella said...

I'm a regular reader and just wanted to comment to offer my support and love for ya!! My son with Ds just turned 5 and I'd by lying if I said Ds doesn't hit me like a ton of bricks at times. How could it not. Let's be honest, no one gets pregnant and hopes their baby has a chromosomal anomaly or CP, Autism, Cystic Fibrosis or a any other thing that we humans can have. It's all in acceptance of the place you are in, and making the most of the life we have. And you clearly do that with love, humor and grace each and everyday. You are going to thrive as a Mommy to how ever many children God blesses you with (no matter the sex or the amount of chromosomees they have).

I feel honored to share in this journey with you and all those other awesome Mommas out there!! And secretly, I'm kind happy my son is a bit older than your Nella cause I feel I have learned SO much from you...I'm glad to be able to offer some insight for you as a mom with an older child in return :)

Heidi said...

I'm sorry you got hit by the bus! Thank you for sharing it, though. It is so nice to hear how a positive, optimistic person approaches something that can cause heartache. Nella is beautiful! It is an honor to see you treasure her, even while you work through your fears.

Linda MG in Calif said...

To Anonymous (7/6, 8:08)..You say YUK to this blog? Hmm..well, here's a thought. You have free choice, too, of course. and that ALSO means if this is so YUK here and you do not like it or enjoy it, you do not have to read it or comment. No one is forcing you to, right? Enough said.

maryanne said...

Kelle, I have a 14 year old son with a learning disability. In a recent meeting with the school department I was asked, "What do you want to see happen over the next year?" I replied, "I want his teachers to recognize what his strengths are." The school representative said, "No one ever says that. Don't you want him to work on his weaknesses?" I said, "I have been hearing about what you think he CAN'T do for so long, I would love it if we could focus on all the things he CAN do." So in a small way, I can relate to your story. And thanks in part to your blog, I have been trying to change my outlook. His achievements? Oh, they mean so much -- everytime he gets a good grade, or scores a goal, or surfs, or goes rock climbing, it builds his confidence and my confidence in him. I want to yell to the world, "See? Stop underestimating him!" No one, not even the so-called experts, know what he's capable of. Nella will continue to surprise you as my son surprises me!

Linda MG in Calif said...

To JESSICA K (7/6, 6:05 am). THAT was SO beautiful, what you shared; about God choosing parents. Thanks so much for sharing that. Kelle, you insire and you have opened up all this sharing and sense of communty here! And thanks always for sharing your family with us, You and Brett and your girls and the boys. And Poppa. Have a great time on your trip!!

Michele said...

You really do have a great outlook on things. My youngest was born premature and I often feel like it's a waiting game. She's doing so great and most days I forget, but some days I wonder if the other shoe will drop. And like you said, it's hard to remember with my older daughter...when she did this, or how, and are they different? But then we go back to our day at hand and it's okay :)

ParenteauFamily said...

DS hits me hard too sometimes, like when I see a group of High school girls playing on a sports team, laughing, talking about boys and texting each other I wonder if that will ever be my daughter (she's 5) ....my heart sinks. The sad times will come at times throughout her and my life I suppose, but they will never be as bad as the first days. Take comfort in that. I love your photos and your blog, your daughters are beautiful.
HUGS,

Tobi said...

I don't have any kids yet. I'm a 22 year old newly wed and I think about our future every day; what our children will look like, what their personalities will be, if they'll play soccer or football, do ballet or art, whether or not they will be healthy. I wonder if I'll be a good mother. Regardless of what happens, though, I just hope I will be HALF as brave and gracious as you are. You truly inspire me with your positivity and your daughters are gorgeous.

Kelly C said...

I just wanted to comment and say that I absolutely adore Kelle's blog. Today's post was so beautiful and honest. I have 2 boys and have felt that momentary sting of being without a girl..but that moment passes and I realize that my life wouldn't be the same without these 2 boys in my life. I wouldn't change it for the world!

But, I also have to say that this is a public blog. Kelle has to understand (and I think she does) that if she puts thoughts and opinions out there, she is going to get thoughts and opinions back. Positive and negative. That's part of life, part of blog writing. And just as Kelle has the freedom to write whatever she pleases, so do commenters. Everyone has the right to say they are offended and speak their minds too!! That's what makes the world go round! (It doesn't give you the write to be an a-hole..but it happens).

Kudos to Kelle for handling the negative feedback with grace! And for writing such inspiring, thoughtful posts!!!!

Mel said...

"And the minute you welcome one into your life, you inherit a thicker skin...because the bus will hit you plenty of times to the point you'll think you damn near died. But you don't. You pick yourself off the ground, dust off your knees...and move on. Because beauty awaits. The beauty that fills in all the holes and rough spots."

EXACTLY. You nailed it. Thanks for your words, and thanks for being so awesome :)

Marla Taviano said...

Looooooooove the paragraph right before Nella's pic. Love, love, love, love, LOVE. Preach it, girl.

The K Family said...

Amazing post Kelle! You always have such a way with words.

Alyssa said...

I totally understood what you meant when I read your post, but when reading comments, I was surprised to see not everyone else did.

There are things in life that won't ever be, and you have to accept it. Like, what would my life be if I had married someone else? I wouldn't have my daughter, and that would be awful.

Like, I'll never know what it's like to be 19 all over again but experience university differently. But it's just what it is. I can't go back in time and change it. I have to accept it.

I see exactly what you mean about how if someone had two boys they'll never know what it's like to have a girl (and vice versa!).

I getcha!

Linda MG in Calif said...

I agree that Kelle ALWAYS handles any seemingly-negative comments with such GRACE. Of course, THAT does not surprise me at all. For I, and so many can see what kind of human being she is, from out visits here. We know what kind of soul and spirit she has. She always takes the higher road and never lowers herself when responding. She is amazing. And, yes, as someone wrote here, everyone has the right to say what they want and it does NOT give them the right to be an a-hole, but as it was said, it happens.

Alyssa said...

Add: Not that it's bad to have two boys, just that they'll never know girls.

RMAinMD said...

,,,like the commentor before me this weekend i too felt like the terminal that the buses were traveling in and away from,,,the bus impact was different but nonetheless the contact and force was ferocious, i felt the hot pavement on my skin and thought when will this all end,,,and then i said my prayers and while its not all better and i still have the tire tracks on my back, i will survive this hit as i've survived all the bus moments before this one and the others that will follow,,,enjoy your travels

Anonymous said...

Thanks for another great post. I'm due with number 2 in a few weeks and am feeling tired, overwhelmed and wonder every now and then what the heck are we going to do with 2 of them! I needed a dose of remembering the beauty! :-)

Amie said...

Well said, Mama. Way to rise above!

Anonymous said...

We ask ourselfs that every now and then... "Is he doing / not doing that because he has Down's?" then quickly remind ourselfs that he's Max and what ever he's doing is because he's Max nothing else xxxxx

Nella is Nella and any thing she does or doesn't do is perfectly normal for Nella just as all our littles have their own ways of growing ....


Thank you for sharing your heart with us I found your blog last week which was the week of my son's first birthday and have been greedily reading on from and back before Nella's story. It's like you reach into my soul take my feelings, put them into words and make them beautiful xxxxxxxx

karen johns said...

wow, i love your thinking, its like you have taken my thoughts and feelings and published them!!! your girls are stunning x
i have 6 sons, all adorable and last november i gave birth to my beautiful ruby! she is the jewel in my sparkling crown! ruby has ds and i have felt every emotion possible since her birth! she is 7 months now and adored by all!!! x

→Daniele← said...

I will never stop thanking you for this blog and your words...I "found you" in a time in my life when I needed perspective (shortly after learning of our baby's vsd). I got it and then some. I happily and thirstily drink the Kelle koolaid. =)

Anna said...

I am a teacher for students just like little Nella Bean. I go to work with the same attitude you are living. Who Cares...They have Down Syndrome... It's Ok! And It's OK b/c they are beautiful, sweet, silly, heart warming... the whole she-bang... Who Cares if they also have Down Syndrome.
Keep lovin that little girl like there's no tomorrow. And keep praising every one of her little accomplishments!! And think of it this way... At least she's playing with her toy! What an accomplishment.
WAY TO GO NELLA!!!

Katherine said...

Your story or approach to how you perceive Down Syndrome sounds much like an account made by another mom:

http://www.ndsccenter.org/resources/package1.php

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 that 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 guide books and make your wonderful plans. The coliseum. The Michelangelo 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 stewardess comes in 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 and buy new guide books. And 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, 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.

emily petrous said...

"Parenthood is hard and beautiful."

Kelle, you don't know how much I needed this post today. I was having a battle of wills with my almost 2-year-old, and this reminds me to keep an eye on the bigger picture. I just love your attitude towards life and since finding your blog, I find that although we go through periods where the sun may not be so sunshine-y, there still is sunshine and we just have to find it. No matter what cards any of us have been dealt, the sunshine exists for all of us, through rainy days and all. Thank you.

Nella is getting more beautiful by the day, by the way. Just perfect.

Katherine said...

http://www.ndsccenter.org/resources/package1.php

Take a look at the "Welcome to Holland".

Mary said...

Leah is almost 3 1/2 years old and I'm still surprised by it some days.

j210209 said...

This is such a beautiful post... Thank you for sharing it with us...

And that photo of Nella is gorgeous xx

dig this chick said...

Thanks for charing this.

There are easy and hard days with all things that are valuable in life. Doesn't make the hard days any easier but I think sharing the hard, accepting the hard, moving through the hard helps. I hope it helps you like it help those who read about it! (I think it does...!)

On another note, I finally found my phone charger and got your message! I will try to call you today or tomorrow. x

HT said...

Even though I'm nr 180 I wanted to drop a note saying I enjoyed reading this post because I think we all get these moments. It does not really makes sense why it hits us so hard, but it does! And it is somewhat surprising. I think you have two beautiful girls and you are a beautiful person too!

Bikini By 30 said...

Agreed agreed agreed. Your post is just what I needed today. You're so right-there are an infinaite number of things we could let ourselves be disappointed about or wonder what it's like to have or not have. Thank you for that perspective!

Maria said...

Kelle~if you had given birth to a baby without Down Syndrome you wouldn't have Nella, who so many of us love. When I see her soft,smushy little body & that beautiful face I just want to hold her & sniff her & smother her with kisses. Hopefully, days like today will be few & far inbetween. Love her, enjoy her & cherish her & that little supermodel Lainey. You have inspired me in ways you will never know. Much love to you. Enjoy your trip!

Million Dollar Mamma said...

I went to Key West when i was 19. Boy was I a hot Mamma back then!
ha ha. I am still a hot Mamma with babies. My mom always told me that children with Down-syndrome are God's angels.

Jamie Lane said...

I love this post. Don't let haters keep you from doing this again. You talk of thick skin, let them thicken your skin even more! And keep it coming!



<3

annofthejungle said...

Thanks for this post! I thought I had already thought every profound thought that could be thunk in regards to DS, but you made me think about things I had never considered.

And I don't even understand what the anonymous commenters are objecting to. Those people must spend a lot of time being offended by people who have no idea they've offended anyone!

Starrymedgirl said...

I've been following your blog for a few months, and absolutely love your words and photos. So often I read what you write, and think, "Yes, that's it exactly!" I had to comment about this post because it was my favorite of all. You really catch the heart of parenting--the vulnerability juxtaposed with the greatest joy. Also, LOVED what you wrote about the things we'll never experience. My sister and I talk about that--how sometimes people throw pity parties b/c of what life experiences they/we perceive have been missed. But having some and missing others is the only sure thing! And that's a powerful perspective--just love what you have! Your blog brightens my day. Your girls are beautiful.

Helen said...

Hmmmm. I must say I'm a little shocked at some of the negative comments on this very honest and candid post. Especially to the anonymous commenter who said that Kelle was "obviously" disappointed that she didn't get the picture perfect family. Funny...I always thought that Kelle's point was that her family *is* perfect - for HER. I feel sorry for that anonymous poster...but hey. I guess it's a reminder of the negativity and prejudices that she and Nella will face in the real world, right?

Kelle, when I read Nella's birth story, my first thought was...wow. I may never get my baby girl, but my two boys have been sent to me for a reason...they have been made perfectly for me, and I am blessed to have them. So I get where you're coming from on that comparison! Nella could have been sent to parents who CHOOSE to despair of her syndrome and define her by it. Instead she was sent to you and Brett, who choose to rock it out every single day. Must respect for letting that bus hit you. We all need a little reminder every now and again, that life is real and hard and raw. How else would we appreciate the beautiful and amazing and magical moments?

Don't let anyone, especially anonymous commenters, make you feel bad for choosing to see the sunshine instead of the clouds. That attitude towards life is exactly why Nella was sent to you.

Lianna said...

Even if you NEVER wrote one single word about Nella, but kept every single picture on your blog, that in itself would be enough for the world to see that a baby with Down syndrome is a baby first. Because of your story, so many people are touched by what I thought that they would never get until they had a child with Down syndrome. It makes me incredibly happy that people like yourself choose to celebrate ALL of who Nella is!

The idea of going back and forth of what is your child and what is that little extra within your child is normal. We all do it, I think. And I think we all come to the same place, too. I couldn't imagine my Gabriel being anyone different than who he is.♥

karla said...

You have such a way of putting into [better, more insightful] words the very things I feel.

I often have those types of inklings, the "what ifs" and wondering what things would have been like. But even though the grass sometimes seems greener on the other side, I'll take my technicolor craziness because I know how insanely blessed I am.

Heather said...

Nella is breathtakingly beautiful. Truly. She is so lucky to have you for a Mom!

Maria said...

This was such a beautiful post. I just recently started following your blog, and I am completely amazed at your positive, upbeat attitude towards life. No matter how hard things are, you are always so positive! You really inspire me to try and be a happier person, and to see the good in every little thing in life, even if it's not so good at all. When I read this post, it was the first time I have ever really realized that there are so many things that we as individuals will never know, so why dwell? There are so many other beautiful things in life that we DO know and WILL know, and that is what is important. Life is not about having everything you want, it is about loving and wanting everything that you already do have. Beautiful post! Thank you so much for this.

Anonymous said...

God is GREAT! HE knows who you are and what you need. HE chose YOU to be Nella's Mommy because HE knows you will be a perfect Mother, and HE definitely has great plans for you and family.

Kelle, when the bus hits you, please always remember "things happen for reasons and great plans soon to come in your life" - Life is short (we never know what is going to happen in next seconds). So enjoy every moments of your life with your two beautiful angels. Live the life as is...try not to worry so much, whether it's normal or not normal. Embrace every single things Nella does...Nella is Nella; she has her own ways :-D Try not to compare her with other kids. Nella is PERFECT in her own way!

Hug!
~Mommy of 2 boys, who never wonder how it feels to have a girl~ ;-)

Anonymous said...

Thanks for writing this. Like you, my family has moved forward and we are enjoying life. We are not defined by Down syndrome. So much so that I sometimes forgot to mention the fact that my daughter has Down syndrome and you should the surprise look on the faces when we show up somewhere new like the first day of dance class. "Oh, did I not mention Lexi has Ds? Well...she loves to dance (and has some killer moves) just like these other little girls!"

But, I will say that we are always aware of its presence in our daily lives. Not because we are sad about it, but because it is such a part of our daily life and schedule...therapy sessions, medical appointment, special ed preschool, special needs trust, IEP's, etc.

Sometimes I am concerned that I have done our family a disservice by never talking about the difficult times. It seems I have done such a great job portraying that my daughter is just like everyone else (more alike than different campaign approach) that everyone now expects my daughter to keep up with peers, attend college, get married and live on her own. That very well could happen. Realistically, it may not.

The bus still comes every now and then. It arrives when the other 4 year olds run quickly up the steps and pass my duaghter again and again on the big inflatable slide. She sweetly stands at the bottom and asks, "help please, mommy" and I wait to get the a-ok nod from the gentleman working the moonbounce slide. It arrives as the neighborhood children run around (including younger brother!) and just as Lexi finally catches up to them in hopes of participating, they have moved on to the next game. Oh, the sting! It hurts.

That all being said, a down-syndrome-less Lexi would mean I wouldn't have all the joy celebrating each small success. The gift of perspective. The understanding of what is important in life. My amazing daughter who I couldn't love an ounce more!

So, just wanted to say thank you for writing this. I love how you have shared your life and let others know Down syndrome is beautiful, not scary. I also appreciate the fact that you sometimes share the struggles...I feel it is important to educate others and bring about awareness of Down syndrome. TV and news always portray the high achievers and success stories, leaving many to not understand the small struggles of daily life.

Love,
Jill B (Overland Park, KS)
http://lexiandluke.aboutmybaby.com/

PS - Oh, and damn that low muscle tone. It makes all coordinated movements so very difficult. I always explain it as....try moving your arm in a perfect cheerleader or dance move right when it "falls asleep". Tough, isn't it?!!

Anonymous said...

Kelle, I just wanted to thank you for keeping it real. My son is 14 and I have been "hit" by that bus, many times. Lots of times when I least expected it. But you know what, the hits come further and further apart the older he gets. Life is what you make it and you figured that out much earlier in your journey than I did. It's amazing what children can teach us. We all have things to worry about with our kids, making really good memories is what I try to worry about these days! They grow up way to fast!
Pam-
www.elijah.net (not a blogger yet, just a very old website)

Crystal said...

I think the bus hits every parent sometimes -- it just comes wrapped in a different paint job. You are right in what you say. And we all love you for it. :-)

ayshamartin said...

Beautiful post Kelle! You have such an amazing gift for putting your thoughts into words.

Have a great time on vacation making sweet memories for your little girls!

ayshamartin said...
This comment has been removed by the author.
Jill said...

So fabulous. This one also hit home with me. My son Kinglsey was born with Spina Bifida exactly one week before Nella and I found your blog a couple weeks after. Your posts about Nella and being Nella's mom ring so true to me - the ups and the downs. I'll never know what it's like to be the mom of a quarter back, but I couldn't care less anymore. The bus hits. But then it goes on somewhere else. Thanks for always reminding us that it's okay to move on from the diagnosis and all the blah and just love and adore our children.

Jen said...

As a teacher of seventh grade students, my teaching team and I are always preaching about diversity and tying it into lessons on bullying. We talk about how easy it is to "hide" behind a computer screen and type all the things we wish we had the guts to say to others in person but know we never would. Kind of like anonymous posters on here (and not all, because most anonymous posters truly just want to share their own inspirations). These are the ones that wouldn't dare sign their name to the bottom of their comment or even use their own account that shows their name. It's like middle school in the blogosphere. (That's about as creative as my metaphors get...)

On a lighter note--loved the blog. I think all of us get hit by our own bus from time to time. It doesn't even have to be regarding children. I hindsight I realize that the time I was hit by the bus was when my husband and I were going to a fertility center trying to get pregnant only to find out that in vitro was our only option, and that even looked slim. So, we cried, vented, took out a loan, and persued the treatments. By God's grace, after our loan was approved we found out we were pregnant "au natural", and were able to use the loan $ for other bills. During my pregnancy we were so ecstatic we turned down all testing knowing we would love whatever God blessed us with, of course never thinking that we would actually have a baby with special needs. But regardless, WE WOULD HAVE NOT GOTTEN TESTING ANYWAY. Three days after Cameran Leah was born the attending pediatrician suggested she get tested for Ds. We were shocked. The worst part was a nurse that came in later that evening. After telling her we sent out a blood sample for Downs her response was something like, "Oh, you didn't know before she was born?? Ohhhhhhhhh, you didn't get any testing..." It ticked me off so badly, because her voice inflection basically implied what she really meant--that we shouldn't have brought our little peanut into this world had we known she would be have Ds. So no, to those who wonder, there are a lot of families out there that do not choose testing, for a variety of reasons. Yes we were surprised, but to look back and know that we were blessed with a child period, is the miracle we are most thankful for.

Cami is our first and we don't know anything other than weekly interventions from OT, PT, DT, and additional doctor appointments. Will we have more children? Likely not naturally, as it was so difficult to have Cameran, but we have looked into adoption. Sure, I mourned and let the darn bus hit me hard and rob me of the first few weeks of Cami's little life, but I too dusted myself off and know that I am thankful for the family God has chosen for me.

You're a rockstar,

Jen @ lovingpeanut.blogspot.com

PS Cameran is finishing up steriod treatments for infantile spasm seizures and is still jerky with her movements--to the point that my husband has nicknamed her hands the "Petter" (right hand) and "Beater-Upper" (left hand).

Jen said...

As a teacher of seventh grade students, my teaching team and I are always preaching about diversity and tying it into lessons on bullying. We talk about how easy it is to "hide" behind a computer screen and type all the things we wish we had the guts to say to others in person but know we never would. Kind of like anonymous posters on here (and not all, because most anonymous posters truly just want to share their own inspirations). These are the ones that wouldn't dare sign their name to the bottom of their comment or even use their own account that shows their name. It's like middle school in the blogosphere. (That's about as creative as my metaphors get...)

On a lighter note--loved the blog. I think all of us get hit by our own bus from time to time. It doesn't even have to be regarding children. I hindsight I realize that the time I was hit by the bus was when my husband and I were going to a fertility center trying to get pregnant only to find out that in vitro was our only option, and that even looked slim. So, we cried, vented, took out a loan, and persued the treatments. By God's grace, after our loan was approved we found out we were pregnant "au natural", and were able to use the loan $ for other bills. During my pregnancy we were so ecstatic we turned down all testing knowing we would love whatever God blessed us with, of course never thinking that we would actually have a baby with special needs. But regardless, WE WOULD HAVE NOT GOTTEN TESTING ANYWAY. Three days after Cameran Leah was born the attending pediatrician suggested she get tested for Ds. We were shocked. The worst part was a nurse that came in later that evening. After telling her we sent out a blood sample for Downs her response was something like, "Oh, you didn't know before she was born?? Ohhhhhhhhh, you didn't get any testing..." It ticked me off so badly, because her voice inflection basically implied what she really meant--that we shouldn't have brought our little peanut into this world had we known she would be have Ds. So no, to those who wonder, there are a lot of families out there that do not choose testing, for a variety of reasons. Yes we were surprised, but to look back and know that we were blessed with a child period, is the miracle we are most thankful for.

Cami is our first and we don't know anything other than weekly interventions from OT, PT, DT, and additional doctor appointments. Will we have more children? Likely not naturally, as it was so difficult to have Cameran, but we have looked into adoption. Sure, I mourned and let the darn bus hit me hard and rob me of the first few weeks of Cami's little life, but I too dusted myself off and know that I am thankful for the family God has chosen for me.

You're a rockstar,

Jen @ lovingpeanut.blogspot.com

PS Cameran is finishing up steriod treatments for infantile spasm seizures and is still jerky with her movements--to the point that my husband has nicknamed her hands the "Petter" (right hand) and "Beater-Upper" (left hand).

«Oldest ‹Older   1 – 200 of 503   Newer› Newest»