Tag Archives: Down syndrome

Rise above the “R” Word- Down syndrome awareness Month

October is Down syndrome awareness month, and as I thought about what to be aware of the word retarded continued to come to mind.  You see, in many ways this word haunts me and the many others who live and love people with mental disabilities.  As I thought about what to write and how to express my feelings on this word, it dawned on me that it was really quite simple and can be explained as you would explain it to a child….

Retarded is not a nice word.

The R-word is INCORRECT

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I realize that for some of you the immediate response is “give me a break” or “I don’t mean anything by it” and I get that.  Truthfully, I was a person who, up until the birth of my child, did use this word; quite often I must add, and I carry guilt over that to this day.   I never meant anything by it- I certainly didn’t know I was offending anyone.  It was just another word.  The problem is that it’s NOT just another word.  Like many other words that people of a certain culture, race, or sexual orientation are mortified to hear, retarded NOW falls into that category for me.  If you look at the online dictionary you will find this

Retarded- Often Offensive Affected with mental retardation.

This word is a slap in the face to all the parents who have a child they see working so hard every day to learn, to grow, and to love.  Who strive to fit in and be just like their peers, to be seen as equals and who are thrown back a few steps every time someone in society uses this word.

The R-word spreads HURT

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Now, I realize that being politically correct can be annoying and that sometimes in today’s age it seems like the list of “inappropriate words” continues to grow.  But the bottom line is – it doesn’t matter.  If a word is offensive to an entire group of people living in society then it should be known, and people should attempt to remove that word from their vocabulary.

Why?  Because whether you mean for it to be or not, it’s like a punch in the gut to so many people who deal with the reality of mental delays on a daily basis.  This alone is enough reason to stop using it- and any word that offends a group of people in this world.  Because we are PEOPLE first and should use PEOPLE first language.

Using the R word pushes Kelsi back a few steps and further perpetuates untrue stereotypes about Down syndrome.   So the next time you go to use the word retarded, I urge you to think about my daughter and please don’t.  This small difference will help strip away the ignorance surrounding Down syndrome and help empower Kelsi in her life.  Also, if you hear someone else use it simply explain it to them as you would to a child…

Retarded is not a nice word.

The R-word IGNORES INDIVIDUALITY

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WHEN YOU WISH UPON A STAR… | Down Syndrome Support

Fresh off our family vacation to Disney World, I’m on that high that comes with vacationing and visiting the most “magical” place on earth.  So with that in mind, and on the 1 year anniversary of Kelsi’s Corner…

Once upon a time I set out on a mission- a mission to prove that you could have a very “normal” life by our general society’s standard while raising a child with Down syndrome.  I wanted to show that Down syndrome was a small part of our lives.  To show through day-to-day living that it doesn’t make up who I am as a mom, who Kelsi is as an individual, or who we are as a family.

I wholeheartedly still believe that is true.  As I approach the year anniversary of my blog and reflect on it, what amazes me is that in my efforts to prove my point I’ve been forced to do exactly the opposite.  My original plan was to show that I could go about my daily life as it was before, never focusing on Kelsi having Down syndrome and never really giving light to it in any way.  I thought that by launching Kelsi’s Corner I would put this plan into motion.  Only a year later does the irony of my efforts occur to me.

It’s amazing how sometimes the very things we do NOT want to define us in life end up being the cornerstone of our definition.  Rather than going quietly about my life and just showing those around me that you can function in everyday life just as everyone else does- WITH a child with Down syndrome, I’ve had to shout it from the mountain tops.  I’ve exclaimed with loud exclamation points to my family and friends, facebook friends, high school acquaintances, strangers, women I’ve never met- LOUD AND PROUD that I HAVE A CHILD WITH DOWN SYNDROME!  The one thing I didn’t want, to be put in a Down syndrome box, is the very box I ended up creating.

I also hoped to save one life, just one, and it would all be worth it.  I’ve realized I may never really know if this happens, and my heart breaks when it doesn’t.  Instead, my mission has shifted.  I hope one by one to help change a person’s perception, to give comfort to a woman in pain post-diagnosis, to ease one family’s anxiety while waiting for tests results, and to show someone who has already passed judgment just how wonderful Kelsi is  just as she is- extra chromosome and all.

It’s ironic as it is the exact opposite of my “plan,” but sometimes the plan isn’t what you anticipated and there is a greater purpose.  I’ve realized that this is a journey, not a destination and I am open to where it takes me.

So one year later, on World Down Syndrome Awareness Day and to my amazement again, here I am shouting it: “My daughter has Down syndrome!  It’s okay!!”  She’s more like your kids than you realize and my life is very much just like yours.  I’ve accepted this path because in my opinion, Down syndrome and all, we are living happily ever after…

KC DW

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This Little Light of Mine | Down Syndrome Support

When asked to describe my children I often find myself saying that Kenna is the love of my life and Kelsi is the light of my life.  Now to be clear this isn’t to say that I don’t love Kelsi or to say that Kenna doesn’t shine as bright as her sister.  For me it’s a way to explain the differences in them, in the way they make me feel, and the way they’ve affected me.

Kenna is my first born- my outgoing, amazing, sweet, daughter who fills my heart with more love than I thought it could hold.   She has taught me unconditional love and sometimes I am so overwhelmed with my love for her that it hurts.

Kelsi is my precious, brave, happy little girl- the light of my life.  Because of the way she shines, because of her infectious smile and humor, and because of the clarity she brought to my own life.  In a way I am thankful for the ignorance I once had because of the place it allows me to be in today.   Facing what I thought was something “awful” caused me to break down to a point where I was able to rebuild with a stronger foundation.  It gave me clarity that there is a plan, that I may not always understand it in the moment, but that I must have faith that it is what is meant to be.  Today, even though I am elated to be Kelsi’s mom, that experience helps me keep my eyes open and remember what is important.  It’s not my bank account, or whether I’m late, or if I feel frumpy that day.  It’s not the car that cut me off, the neighbor who’s house is bigger, or the the coffee I spilled on my desk.  It’s not the little things that we so often inadvertently place importance on as we go about our day-to-day life.

It often takes tragedy,  like our country is currently facing, or a heart-wrenching situation to bring things into focus.  For me it took finding out I was having a daughter with Down syndrome to become the person I should have been to begin with.  I wish it didn’t take tragedy for people to want to be better and kinder.  I wish it didn’t take having Kelsi for me to open my eyes, but often it does and for me, it did.

The important thing is that we learn from these moments, and learn from the Kelsis of the world.  We need to be loving and kind to all humans; accept all people, all children.  Let’s be an example to your children and to others.  Treat others as you want to be treated; we know this.  So many of us repeat it daily to our children, but as adults we need to do a better job of acting on it.

Let’s do better, let’s BE better.  Let’s stop looking at our differences and embraces our similarities.  We are all human beings in search of the same things in life.  Let’s be thankful for the gifts we do have instead of focusing on what we don’t have.  Let’s be kind to each other.  Let’s say hello, hold doors, let someone in on the road.  Let’s focus on what’s important…family, love, children, our health, freedom, safety…..

Children are gifts- All children.  You are blessed to be given the opportunity to be a mom or a dad to any child.  When life gets hard or you are facing a difficult situation-  Dare to be different, dare to take a chance, dare to let that light shine- it’s a light this world needs more than ever.

This little light of mine I’m going to let it shine.

Click here to watch video documenting Kelsi and our journey as a family

Happy Holidays from Kelsi!

Happy Holidays from Kelsi!

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Be Aware or Beware! | DOWN SYNDROME AWARENESS MONTH

October is Down syndrome Awareness Month.  So what should you be aware of?  I often think it’s not what you should be aware of as much as of what you should BEWARE.  Beware of the stereotypes, beware of the myths, beware of the inaccurate information out there in the world regarding Down syndrome.
To promote Down syndrome awareness I could discuss trisomy 21 and the extra chromosome or give you the medical definition or I could quote you statistics on the number of people born with Down syndrome.  But that will give you about as much insight into Down syndrome as telling you I was born with BEY2 (aka, brown eyes).  So as a mother of a 3 year old with Down syndrome, instead of telling you what Down syndrome is, I’d rather address a few of the myths and I’d like to tell you from my perspective what Down syndrome is NOT.
A Down syndrome diagnosis isn’t the end.  It is not the death sentence that most people, including myself, imagine when they hear those words uttered by the doctor.  Rather, it’s the beginning… the beginning of a story of another child, another gift, another life.  Down syndrome does not define an individual any more than my brown eyes define me.  It is a part of who that person is- first and foremost a human being.


A person with Down syndrome is not disabled.  Rather they are a person who is able with a different set of abilities.   In our pursuit for perfection in this cut- throat society it is so easy to put labels on people rather than just seeing them as people with different circumstances.  For those of us living outside of society’s definition of “normal” and not just with Down syndrome- the fact that some people wear their challenges outwardly does not make them disabled.  That society often can only see and label these things as “disabilities” shows our disability as the human race.   Because in fact aren’t we all challenged and inadequate in some way whether it be emotionally, socially, intellectually, athletically, etc?  Oscar Pistorius, a South African paralympic athlete said, “ My mother said to us one morning, ‘Carl, you put on your shoes, and Oscar, you put on your prosthetic legs.’ And that was the last we heard of it. I didn’t grow up thinking I had a disability,” he said, “I grew up thinking I had different shoes.”

A child with Down syndrome is not a burden!  Do not feel sorry for me!  When you see a family with a child with Down syndrome or hear of a friend who received that diagnosis it is not something you need to say or think “I’m sorry” in response to. This is not to deny the confusing emotions that originally come with such a diagnosis or dismiss the pain and sorrow many women feel during this time.  Of course it’s shocking and of course we all hope for the very best health for all children but pity is not a warranted emotion.  Many women have asked me how to tell their friends or family because of this; because they don’t want the pity, they don’t want the whispers and the “I’m so glad it’s not me” to be said behind their backs.  For those of you facing this situation, it’s okay to feel the grief  and to mourn the loss of the child you thought you were going to have but hold your head high!  Because when the despair fades and when reality sets in, your child will be the light of your life and bring joy and inspiration to all of those around you.  So please don’t feel sorry for me, for Kelsi, for people with Down syndrome.  I’m happy, Kelsi is happy and we are ALL blessed!

Lastly I often hear this- parents of children with special needs have a higher divorce rate.  The reality is a child with Down syndrome does not lead to increased divorce rates.  In fact, divorce rates among families of children with Down syndrome were actually found to be lower than in families without a child with Down syndrome.  When you are forced to change your own outlook on what’s important in life you are often left feeling enlightened, happy and content.  I’ve heard many parents say the same thing and I echo their sentiments in my own life…Kelsi is the child I never knew I always wanted!
So this October-Down syndrome awareness month- please help spread the word!  Help people be aware by making a personal effort to beware of the myths and by spreading the truth about Down syndrome!

Love,

Dana

p.s. If you like this post, PLEASE show your support and help to spread the word by “Liking” Kelsi’s Corner on facebook and also consider sharing with your friends.  A little “like” will go a long way.  🙂

*Photos courtesy of Tyler Plank Photography*

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Manic Monday | Down Syndrome

Just another Manic Monday….

Its Monday!  Most people are thinking, yes, Monday why the exclamation point?  For many its more like ” its Monday- blah!”  Whether you trudge to work, drop the kids at school, or whatever your routine- it’s the start for many of  yet another long week- the weekend seeming so far off.   I find myself often falling into this pitfall trap of the Mondays- it’s an easy thing to do.   But not today- today I’m thrilled it’s Monday-I’m thankful for another week, another day, another minute to enjoy this precious gift called life.

Yesterday I spent the day at the new Ann & Robert H. Lurie’s Children’s Hospital.  Although it was my first time in the new hospital I always have a bitter sweet feeling being in any children’s hospital.  I feel happiness that my daughter is home and healthy enjoying her life, sadness for the children currently residing there, and anxiety as past memories of our own struggles come flooding back.

However, this time I was not there for Kelsi, but rather for a plaque dedication for my grandmother.  When my Grammy died last October we set up a fund to raise money for Kelsi’s heart surgeons in her name.  Many other families do this as well and yesterday the hospital honored these people in a heart wrenching ceremony filled with love and many tears.

The pain and heartache in this room was palpable.  As one parent after another stood up and shared memories of their loved ones, mostly children, I was overwhelmed with pain for these people.    One man who touched me the most told of his young pregnant daughter, who was a twin that was taken suddenly near the end of her pregnancy.  Their granddaughter lived 3 days and went to be with her mommy.  It was sad.  It hurt.  What these people wouldn’t do for one more day-for one more Monday with their loved one.  In the midst of the heartache though was a sense of peace, a sense of hope as the leader reminded us that by living each day we carry on the legacy of those left behind because they live in us.  “Life is like an onion; you peel off one layer at a time and sometimes you weep”

So today I urge you to hug your husband or wife, kiss your babies one more time, tell a friend you love them; Embrace this day- this Monday because we’ve been given another day to live- another day to love.

This is the day that the Lord has made – we will rejoice and be glad in it.  Psalm 118

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Eye of the Tiger | Having a Child with Down Syndrome and Health Issues

* This post is dedicate to Elijah Daniel Lautenbach Leimberer .  A child of the Down syndrome community who went to be with the angels 8/1/2012.

Rocky won best picture in 1976 which was the year I was born.  Most would say this is a coincidence but I like to think not as this is my favorite movie of all time.  There is something about the will to fight that inspires me.  The training montages, the underdog rising to the challenge, Apollo, Adrian’s heart- wrenching speeches… I love it all.  I love it because Rocky fights. He fights for what he wants and he doesn’t give up.  I love it even more since I’ve had Kelsi because I see that spirit in her.   I think other parents of children with Down syndrome would agree that the hardest part of raising a child with Down syndrome isn’t the part that people are initially scared of- the possible developmental delays or social concerns- but rather it is the medical concerns.  It’s when they face health challenges and the increased risk of further health complications.  Health concerns are an issue.  To say they are not would not be an honest reflection of raising a child with Down syndrome.

“You don’t throw a whole life away just ’cause it’s banged up a little.”  -Seabiscuit
I haven’t talked about Kelsi’s earlier days much.  They were filled with many doctors visits and numerous hospital stays.   Kelsi was born with an AV Canal Defect which is a serious heart complication and required her to undergo surgery when she 4 ½ months old.  She was in the hospital for around 2 weeks and a few times prior to the surgery.  My husband slept by her bedside, Grandma stayed during the day and I stayed there as much as I could emotionally handle.  I realized in the first few months of her life that I did not handle the hospital very well.  It scared me, reminded me of the situation I was in and even in the best of all hospitals it made me feel lost all over again.  Following surgery she needed a G-tube for feedings.  Most doctors told me to expect her to have this for years to come as she was past the age of learning how to bottle feed or suck on her own.  That was a pivotal moment for me because I was determined that Kelsi would prove them all wrong.  It was time to be Mickey (Rocky’s coach) in Kelsi’s Corner.  Six months later Kelsi no longer needed a G-tube and to this day is a champ at the dinner table! 🙂

“What if I lose?  Then at least you lose with no excuses- with no fear.”  -Rocky III
Looking back now I always say that prenatally I thought Down syndrome was a big deal but it wasn’t the scary part.  Having a child go through open heart surgery- that was the big deal.  Going into the surgery and preparing  your child for it is what is emotionally draining.  I found myself resisting the urge to bond with Kelsi leading up to the surgery for fear of losing my daughter.  But as I sat there often tempted to wallow in self pity I would just look at Kelsi.  If this little girl was fighting this hard, then so must I.  No parent should have to watch a child with or without Down syndrome suffering or in pain, but it happens regardless.

“Life is like a box of chocolates- you never know what you’re going to get”  -Forrest Gump
The strength Kelsi exhibits as medical challenges are thrown at her inspires me to this day.   Each time I get a shot and facing my upcoming knee surgery (I’m a wimp) I remind myself if Kelsi can do what she does then I can do this.  If these kids will fight this hard for their chance to live, don’t they deserve the chance to fight?  And isn’t it our job as parents to be their coaches?

“Faithless is he that says farewell when the road darkens.” ― J.R.R. Tolkien, The Fellowship of the Ring
In many ways I can relate the emotions that Rocky endures to the way it feels going up against the health issues.  You often feel beaten, scared that what you fear is the bigger and stronger opponent and you are left with a decision.  Will I fight?  Yes.  Is it scary?  Yes.  Is it  painful?  Yes.  Is it worth it?  ABSOLUTELY!

To Kelsi, and all of the children with Down syndrome who fight each and every day, THANK YOU for inspiring us and reminding us that “Anything Worth Having Is Worth Fighting For” – J. Johnson  (I think Rocky would also agree :))

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LIFE IS FOR LIVING

As I watched the news in horror this weekend I was once again reminded that life can change in an instant.  We never know what we will wake up to and what the day will bring.  What i do know is that life is a gift.  I found this poem that I thought I’d share.

Life Is For Living

Life is a gift we’re given each and every day.

Dream about tomorrow, but live for today.

To live a little, you’ve got to love a whole lot.

Love turns the ordinary into the extraordinary.

Life’s a journey always worth taking.

Take time to smell the roses…and tulips…

And daffodils…and lilacs…and sunflowers.

Count blessings like children count stars.

The secret of a happy life isn’t buried in a

treasure chest….it lies within your heart.

It’s the little moments that make life big.

Don’t wait. Make memories today.

Celebrate your life!

Author: Unknown

So to everyone this summer I implore you to enjoy yourself each and everyday- may it be safe and filled with many happy memories

Kelsi’s Corner

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Slideshow of Kelsi | Down Syndrome Support

Photographs and slideshow courtesy of Tyler Plank Photography

For more videos of Kelsi, and other great Down syndrome awareness videos, please visit the Kelsi’s Corner YouTube channel:

Kelsi’s Corner- Down syndrome awareness on YouTube

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Quality of Life | Down Syndrome

In our kitchen hangs a plaque given to me by my husband that says, “Life is not measured by the number of breaths we take but by the moments that take our breath away”. – Hilary Cooper
I think that most people would read that, smile and agree.  This leads me to ask what are the moments that take our breath away?   I’m sure for many people these are similar, yet different things.  I asked friends and colleagues and got the following responses: the birth of a child; viewing sunsets from a boat; road trips in your youth when it seemed there was no limit to where you could drive;  saying goodbye to a loved one; a beloved pet; your wedding; an unexpected diagnosis; a glass of wine and toast with friends; seeing love for you reflected in a loved one’s eyes; an amazing vacation; the moment you realize you made the right decision on something you’d struggled with.  Whatever your answer may be, it is those moments that people place the most significance on and attribute to what makes a good life.  A quality life.
When you hear of people struggling as to whether or not to bring a child with complications into the world you often hear them speak about compromising the quality of life for the child. I can tell you that people with Down Syndrome enjoy life, they contribute to society, many go to college, are gainfully employed, have friends and go about their day in the same manner as you and I do.  So what part of  “quality” is missing that make people question bringing this child into the world?   Is it the possible restriction as to the level of “success” they may achieve?  Doesn’t our society need a wide variety of people to function, from grocery clerks to heart surgeons?   If it’s the reduced odds of a high paying job, then again I ask does this really have anything to do with “quality” of life?  This isn’t to discount a high paying job, being successful or an education.   A good education is important and a good job provides the necessities in life.  I work in the sales field in what I find to be a fun and rewarding job.   I love the feeling of elation when I close a big deal and the anticipation of the check that will soon follow.   Those are good times!  But I also know that my favorite moments in life (the ones I imagine will be swirling through my head someday as I fade off to the next world) will be the moments filled with hugs, smiles, and laughs… moments with family and friends.
So I ask the question again.  What makes your quality of life better or worse?  Is it the moments filled with meaning whether it’s love, sorrow, joy, surprise, the day-to-day normalcy or both? I would say, for me, it’s both with the majority falling into those moments that take my breath away. Given the opportunity I believe most people with Down Syndrome will succeed and contribute to society financially, emotionally, and as living examples of overcoming challenges.   So if people with Down Syndrome can be a part of both the day-to-day and enjoy the breathtaking moments then why the question their quality of life?   For me many of my breathtaking moments directly relate to Kelsi.  From the devastation I felt when I heard the words “Down Syndrome” to the moment I KNEW in my heart I made the right decision to watching her enjoy the beach in one of her own breathtaking moments.  If life is about the moments that take our breath away then aren’t those moments found when we truly live life?  Moments that cannot be bought, only lived?
“It is said that for money you can have everything, but you cannot. You can buy food, but not appetite; medicine, but not health; knowledge, but not wisdom; a bed but not sleep; glitter, but not beauty; companions, but not friends; servants, but not faithfulness; leisure, but not peace; flattery, but not respect; fun but not joy.” -Arne Garborg
Now isn’t this what life is all about…

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Watching Kelsi Grow: From Behind My Lens and Beyond | Down Syndrome

My name is Tyler and I’ve known sweet Kelsi all of her life.  Her mom and I have been best friends since college.  I first had the pleasure of blogging about Kelsi’s Corner on my own photography blog and am so honored to now be posting directly to Kelsi’s Corner blog.   This post will be a little bit different than the previous ones on this blog as I am not one for words.   I see the world, people and relationships as a series of moments to freeze to remember.  Whether I am doing it in my mind or with my camera, it is something ingrained in me.

We recently returned from our annual best friends vacation in Seabrook, SC.  This vacation is very special to all of us.  It is a time we are free from the daily grind and are able to just focus on our group friendship that is a blessing to us all.  I of course capture moments each time with my camera.  As I was looking over the photos from this last trip, the ones of Kelsi especially stood out to me.  This little girl we were hesitant and afraid to get to know in the beginning for fear of losing her has blossomed into this completely beautiful little girl that we all love so much.  And here again I find myself at a loss for words where I feel photographs will tell a more accurate story.  Below are a series of “then and now” photos of Kelsi from over the years taken on our annual Seabrook vacations. This time the photographic story is told from Kelsi’s point of view…

As you can see, Kelsi is of course surrounded by tons of love.  I am so proud of all that she has accomplished in the first 3 years of life, the most significant being surviving heart surgery.   I would say her name describes her perfectly:

Kelsi \k(e)lsi, kelsi\ as a girl’s name is a variant of Kelsey (Old English), and the meaning of Kelsi is “victorious ship”.

I love you, Kelsi, and I look forward to freezing many more of your moments to be enjoyed and celebrated for years to come.  You truly are victorious.

And I do hope do hope the rest of you will stay tuned to see… if you don’t I guarantee you will be missing out! 😉

 

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