Friday, October 31, 2008

Our Local Newspaper Article

3 What are your thoughts?
I have not figured out how to post a link here and make it work. So I will just copy and paste :) If you click on the title of the post though, it should take you to the newspaper site.

Families celebrate children during Down Syndrome Awareness Month
By Staci Schwickerath

Rylee Hageman sang into a microphone, while Jennifer McLeland and sisters Nichole and Ellie Stumbo played on the living room floor at the McLeland home Monday afternoon.
The four friends, three of whom have been diagnosed with Down Syndrome, laughed together as their mothers touted October as Down Syndrome Awareness Month.
It’s a cause close to the hearts of Ellen Stumbo, Chris Hageman and Kristin McLeland, who each have daughters with the condition.
“I’m very passionate about his. I realized when (Nichole) was born, if I am going to talk to someone about my daughter, I have to know my stuff. I have to be her advocate because I think her life has great value,” said Stumbo, whose daughter Nichole turned 1 year old earlier this month.
Stumbo said she and husband Andy have been especially excited to watch Nichole reach milestones as she grows.
“It’s such a big deal for her. When she was sitting on her own, I was jumping up and down. It’s like you witness a miracle. You just know it,” she said.
At the Hageman home, Chris said she and husband Dan treat 9-year-old Rylee no differently than her older brothers Nick and Caleb.
“She really does everything everybody else does — she just does it either a little slower or at a later date. We’ve just never done much with focusing on the Down Syndrome. She’s just done everything with us that she could. We’ve never treated her any differently,” said Hageman.
Jennifer’s parents Bill and Kristin McLeland, raise their 3-year-old the same as they would any other child.
“She just started preschool two days a week,” explained Kristin McLeland. “My expectations for her are probably different than a normal child’s parents, but I expect her to learn just as much.”
Each mother said she has high expectations for her daughter’s education.
With the exception of half an hour each school day, Rylee attends school in a regular third-grade classroom with her peers.
“She does have an aide that helps her, but academically, she does a few things differently. Instead of handwriting, she types things. She reads right along, pretty close to where the rest of her class reads,” said Hageman.
Rylee has many friends at school and has been involved in numerous activities, including a recent cheerleading camp.
“We just haven’t focused on the Down Syndrome. It’s just a fact of life. We treat her like any other child,” said Hageman. “She’s been around these kids since she was in preschool and they’re very kind to her and always include her.”
The girls have a few medical issues and attend speech and physical therapy to help with muscle strength. Even baby Nichole attends speech therapy, where she practices tongue and oral motor exercise.
The women, who were already connected through work or church, often go to each other if they have questions about raising their daughters. Stumbo is also a part of an online forum on Down Syndrome and a regional organization that plans to start a branch in Charles City. Designer Genes will host a parent group in Charles City and a play group in Mason City. Currently, the organization meets in Waterloo and Waverly. (For more on Designer Genes, call Stumbo at (641) 220-0507).
While the McLelands, Hagemans, and Stumbos don’t see their children as any different, some, unfortunately, still do.
“I think as moms it’s very obvious who is looking at your child as a child and who is looking at your child as Down Syndrome,” said Stumbo. “If you go to a website, it’s going to give you a list of medical issues and clinical descriptions of Down Syndrome. Yeah, it’s true, but it’s such a small part of what any person with Down Syndrome would be like. They are a child first, a person first. The Down Syndrome is such a small part of who they really are. I think people need to be reminded that they are not Down Syndrome. It’s a baby with Down Syndrome. It’s not who they are, it’s what they have.”
Hageman said she believes the local community has become more accepting of people with disabilities in the last decade.
“So many times we look at people with any kind of differing ability, whatever that is, and we get annoyed with things they do differently,” said Hageman. “Really, it’s not necessarily their choice to do the thing that they do. It’s the way that they are and we’re not going to change that necessarily. I don’t just mean with Down Syndrome, I mean in general. I look at how annoyed people get with anyone different and we have no tolerance. That’s the way they are and we need to look at it and say, ‘what can I do to be a little more tolerant?’ I would say in Charles City in the last nine years, there’s been a big shift of just kids and even adults being more accepting. ”
All three moms have a easy solution for those who think children with Down Syndrome are different.
“If you think that our children our different, spend a little time with them and get to know them. They’ll make you smile and laugh. Just get to know who they are,” said McLeland.
And smile everyone does — as the parents continue talking about their children, Jennifer puts down the toy she was playing with and runs over to Nichole, wrapping her arms around her in a big bear hug.
“Their ability to experience and to live joy and love and kindness and goodness and gentleness — not with babies maybe,” smiles Stumbo, “is so much greater than you or me or anyone else could know. If we were all a little more like people with Down Syndrome, this world would be a better place because we would accept people more. We would love them more. We would understand the true meaning of joy and how special laughter can be.”

Thursday, October 30, 2008

Notes From the Deep End, by Jennifer Enderlin Blougouras

1 What are your thoughts?
When Nichole was only two weeks old and we took her to Mayo hospital. Andy and I decided to go to Barnes n Noble and buy anything we could get our hands on to learn more about Down syndrome. There were not many choice, but one book caught Andy's eye. He picked it up, read the back, and handed it to me. I think his comment was, "I think you will want to read this book."

The book is GIFTS: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives.
I read the back of the book, and there, in the middle of the book aisle, tears started streaming down my face. Yes, it was a book I needed to read. I opened to the first page, and the phrase "Your life will have flashes of color you never knew possible," has stuck with me ever since. I now live it, I now know it is true.

These women offered words I needed to hear. I devoured the book, it became a life line. Then I got to a story, about a little boy named Nicholas. Maybe the story got to me so because of the name similarity. But I think it was more. As I read the story, I felt like I was reading my own thoughts, my own feelings. And then Jeniffer did something more for me, she gave me dreams!!!!

I asked for her permission to write some of her story here. Enjoy it! Jennifer is a great writer. God used her story to speak to my heart, and for that, I am grateful.

I have omitted sections of her story (like her intro), only because I am sharing the parts that apply to me personally, so if you see (...) it means there is more. So buy the book to read it all, and that way you help support Down syndrome research (all profit is given to this cause).

Notes From the Deep End
by Jennifer Enderlin Blougouras

...So picture this: Parenthood, to me, was like a giant swimming pool. I saw other people in the pool and they looked okay...

Other parents said to me, "Going into the pool can be really scary. But it is all worth it."
I thought to myself, If they can do it, so can I. And, tentatively, I put my foot in the water.

Suddenly, someone grabbed me form behind and threw me in the deep end of the pool. In the deep end! How unfair!...Throw another person in the deep end...!...

How did this happen? Who did this to me? Gagging and coughing and chocking and sputtering, I railed against the shock of the cold water, the unfairness of it all. My head went under and panic set in. I am going to die, I thought. But instinct kicked in and clumsily, I moved my arms and legs. And I did not drown.

Now I was treading water. After a few big breaths I looked around and noticed there were other people in the deep end with me, and they were offering to help. But I didn't want to be in their Deep End Club. And besides, I didn't think I even belonged here. It was only a matter of time before someone told me it was all a mistake and I'd be pulled out of the pool to safety. I should have left well enough alone. I should never have tried to go into the pool, I thought. But since nobody came to my rescue, I continued to tread water. And I did not drown.

Soon I started to float. My panic subsided. I knew I could survive, although it surely wouldn't be pleasant being stuck at this end of the pool. I was able to rest for short periods, suspended on the surface of the water. I felt pretty much alone. Yet, I did not drown.

The I noticed that there was a little boy in the deep end with me, a little boy named Nicholas with eyes that crinkle up like half moons when he smiles. A little boy named Nicholas who loves Bruce Springsteen and Puccini's La Boheme and 1940 Big Band Music. And Nicholas could swim.

Looking at him, I realized that someday, I might be able to do more than float. I might be able to swim. And I might even enjoy it. Perhaps I'd even love it.

As I watched Nicholas I discovered that the deep end allows for underwater somersaults, and in the deep end, it's possible to dive. You can't do that in the shallow end. And I realized that perhaps someday, with Nicholas at my side, we'd both wave to the parents at the shallow end of the pool and say, "You don't know what you are missing, here in the deep end."

Wednesday, October 29, 2008

My Journal Entry June 19, 2008

2 What are your thoughts?
My sweet girls are sleeping. Ellie sleeps in her room, while Nichole sleeps in the swing.

I was overcome with emotion as I watched Nichole rock back and forth. My beautiful baby, my precious baby. To think that some women would have chosen to send her home with the Lord before coming to this world. I cannot imagine my life without her. Yet, not too long ago, as I cried over her diagnosis and was overwhelmed by her sickness, I wished she would have died. I did not know her yet. What kind of mother was I?

But the Lord is good, and He did not let me stay in the dark for long. When I chose to love Nichole, completely, without reservations, with everything in me...I meant it.

The sweet baby that now rocks in the swing has stolen my heart. I would do anything for her. To hold her is a joy. To look into her almond shaped eyes is captivating; they are so beautiful. To see her smile melts my heart. I am smitten, I am in love.

Thank you Lord for allowing me, of all people, to be her mother. I have been blessed with two wonderful gifts.

Everyone can see that Ellie is in fact a precious gift from God. I know that some might look at Nichole as a punishment, or as less than her older sister. But I know, Andy knows, and all that have held her know...that she is a most marvelous gift. She is divine. She has a God given ability to touch hearts, to inspire love, and to bring forth a smile. Even when skies are gray.

Tuesday, October 28, 2008

21 Things I Love about Nichole

3 What are your thoughts?
Because Nichole has an extra 21st chromosome, I will share 21 of my favorite things about Nichole.

  1. She has beautiful blue almond shaped eyes
  2. When she smiles, her eyes smile too :)
  3. She loves to be the center of attention
  4. When you sign "jump" she starts bouncing
  5. She moves her lips for "mama" but she is not really saying it yet, it is so cute though
  6. She likes pulling hair, especially Ellie's
  7. Her face lights up when she sees Ellie
  8. Her face lights up when she sees me!
  9. Her face lights up when she sees a man with a beard, then it will change once she discovers this is not her daddy
  10. She loves to eat
  11. She can scoot on her bottom
  12. I love to watch her sleep
  13. I love her kisses
  14. She has a pretty kissable spot, right at her neck, it is delicious!
  15. Her hair is finally coming in!
  16. She fits just perfect in my arms
  17. She loves to cuddle
  18. She can melt my heart
  19. She has the ability to change hearts
  20. She is an observer, oh my, she really is
  21. She is MY baby

And I have more...

I love her soft skin
I love how she reaches out for me
I love that she tries so hard to crawl into my lap
I love her baby noises
I love her chubby cheeks
I love her two teeth :)
She is happy when she wakes up
When she is going to cry, her bottom lip comes out, it starts to quiver, and her eyes go sad

Okay, I will stop, but I might add some more later, and if you want to, you can add some of the things you love about Nichole!

Monday, October 27, 2008

Great Friends

0 What are your thoughts?
Not having Andy home means I am more busy than usual. I am not getting to post until late at night when I am exhausted. Especially now with sick little girls.

Today I was supposed to go to a MOPS Steering Team meeting. We did not make it because Nichole was not feeling very good. My friend Melinda was wonderful enough to drop of Essential Oils for me to help my girls (and to help me fight off the sickness too).

Later on the day I got a call from my friend Jane Ann saying she would make sure we got a meal this week, with Andy being gone and the girls being sick. I just know that Jody, Marisa, Barb and Melinda sat around a table today and thought about what they could do to help me out. Thank you friends! You are a blessing to me!

Sorry for the short post today.

Tomorrow I will have more time to blog :)

Sunday, October 26, 2008


2 What are your thoughts?
Today during church we got a little bit of snow. Nothing big really. The flakes melted as soon as they touched the ground. I have to admit I was not excited about it. Snow means cold, and cold is not something I am especially fond of.

The cold season also means that there are more viruses roaming around finding available hosts. Ellie and Nichole are both sick. Ellie only has a runny nose, but Nichole is so congested. My poor baby finds it hard to breath at times, and she wakes up in the morning with a snotty mes all over her face. Last night she was so uncomfortable she was crying, so I brought her to bed, I could not sleep because she sounded terrible. It really is wonderful when kids are old enough to blow their noses!

So a little bridge of the nose means things do not drain as well for Nichole. I am not big on medicine, but I am really considering asking her doctor if we can give her mucinex, maybe it will help dry things up.

Andy is in seminary for the week, and I am not looking forward to sickness. It is one of those things where I will really have to trust God and allow Him to carry us through the week. I will be praying for no snow, because we have a pretty long driveway and there is no way I could shovel on my own at once, granted it would have to be when the girls go to bed or take a nap.

Ellie is excited for the week. Lots of fun things happening at school and at church. Nichole is just going with the flow, owning up to being the greatest baby in the world.

Well, I committed to writing every day in honor of Down syndrome awareness month. This has not much to do with Down syndrome, but it has to do with our everyday life. As you can see, our lives are pretty normal.

I will go now.

Saturday, October 25, 2008

Myths on Down Syndrome Part 2

0 What are your thoughts?
MYTH: God gives children with Down syndrome only to "special" parents.

FACT: Very quickly all of us will tell you that there is nothing special about us. We are not more patient, more loving, or more virtuous. As a matter of fact, from my own life, God gave me a child with Down syndrome because my heart needed to be fixed. I needed much changing.
However, I would agree in the fact that many parents of children with Down syndrome (and other disabilities) BECOME "better" people. Just remember they did not start that way, our children transformed us.

MYTH: Children with Down syndrome are always happy.

FACT: They are not always happy. They are crabby, stubborn, disobedient, sad, mischievous, rude, deceiving, and strong willed, just like every other child.
Their ability to experience joy and love surpasses that of a typical child. They in fact know happiness better, but it is not to be mistaken or overlooked as the only emotion they show or feel.

MYTH: Siblings will always be embarrassed or resentful of their brother or sister with Down syndrome.

FACT: All siblings are embarrassed of any sibling at some point or another. Most of the time, siblings tend to become more accepting of others, more caring, more loving. It seems like it is not only the parents that are transformed by their chromosomally enhanced child, it is the siblings as well.
There will be resentment of any sibling if someone gets overlooked.

And my dear friend Karina. Yes, adults with Down syndrome are now getting married, and many go own to have their own children. They used to believe that males were sterile, but they have discovered that it was an assumption based on the fact that no male with Down syndrome was given the chance to have babies. An individula with Down syndrome has a 50/50 chance of having a child with Down syndrome. Remember my first post on meiosis (cell division) half the eggs of women have an extra chromosome, half are normal. Half the sperm of a man has an extra chromosome, half of them are normal.
Who they marry will alter the chances. For example, if two adults with Down syndrome marry, they have 50% chance of having a child with Down syndrome, 25% chance of a typical child, and 25% chance of no conception (because two cells with an extra chromosome will result in no pregnancy, there can be thre 21 chromosomes, but not four).
And many adults with Down syndrome marry people with other dissabilities, and there are even cases where they have married a typical adult.

Friday, October 24, 2008

Myths on Down Syndrome Part 1

2 What are your thoughts?
MYTH: It most be so hard to have a child with Down syndrome

FACT: It is hard to be a parent. A child with Down syndrome is a child. A child that just happens to have an extra chromosome. Down syndrome is such a small part of who he or she is. Other than having to schedule therapies as it is convenient and preferred for each individual family, having a child with Down syndrome is no different than having any other child. You feed them, change them, give them baths, and most important, you love them.

MYTH: I am sorry your child has Down syndrome

FACT: One of the most devastating, and unfortunately most common statements a parent with a child with Down syndrome will ever hear.
What exactly are people referring to when they say they are sorry? The life of a child with Down syndrome is to be celebrated, it is to be cherished, and it is to be admired.
What might seem like something to be sorry about, is in reality, one of the most life altering, heart changing journeys these parents will ever take. They will be blessed in unexpected ways, and there is nothing to be sorry about that!
(I was a sorry sight when I was dealing with Nichole's diagnosis, but NOTHING about her can be labeled as sorry)

MYTH: Your child will always live with you.

FACT: Your child might always live with you too. There are no guarantees :)
Now a days, adults with Down syndrome live fulfilling and productive lives. Many are able to live on their own, they hold good jobs (yes, we are finally moving forward from the traditional bagging of groceries, or busing tables) and many eventually marry, and recently, some have started having families of their own.

Thursday, October 23, 2008

My Wonderful Grandma

2 What are your thoughts?
I grew up in a different culture. A culture that values and "lives" family different than the American culture. For one thing, my parents and my in-laws WILL NOT go to nursing homes for as long as I have a say. This might be the greatest thing that I just don't get about the American culture.

Yesterday I was talking to my grandma. My grandma is my mother too. I was also raised by her. If I did not spend weekends overnight at her house, I at least saw her every Sunday. When we moved and were 3 hours away, we visited often, and during the summer I would stay for weeks at a time. We are very close. I love her dearly.

One thing to know about my grandma is that she is quite the "sophisticated" lady. She grew up with the elite in Mexico, and her family came from Spain with the Spanish court. She is in fact a duchess, if she was to claim her title in Spain. Perfection, good manners, and looks are very important to her.

My grandma has had a serious heart condition for many years. She is a living miracle as she was not expected to live a long as she has. God knows we need her, and He knows how much her love and prayers do to each one of our lives.

When Nichole was born with Down syndrome, we did not know if we would be able to tell her. We were afraid that the news would be enough to break her heart. We were afraid that the news would be devastating and embarrassing. However, she has embraced the news like the lady that she is. Her Nikki (as she calls her) is a joy to her, and she can't wait to meet her and hold her close.

Yesterday I talked on the phone with my grandma. We were dreaming together of how wonderful it will be when she sees her great-granddaughters. In the conversation she said, "Nikki is just like any other child, there is no difference." And this meant so much to me. Because I know that my grandma, despite of what she was "taught," knows better. Her heart knows better. She knows Nichole is beautiful, and she knows that Nichole was sent to our family because we all needed her.

I wish my girls had the opportunity to meet my Mami, to grow up close to her, to know her.

I want Mami to see my girls, to look into Nichole's almond shaped eyes, to hear her singing to her. Nichole has a very special place in my grandma's heart, and instead of beaking it because of a diagnosis, she has given her life, life so my grandma has something to look forward to. Her heart is waiting for the day she gets to meet Nichole. And I am ready to watch that wonderful sight, because it would forever be part of my favorite memories.

Wednesday, October 22, 2008


1 What are your thoughts?
There is a young man that comes to our church youth group who has a special place in my heart. This young man, might be one that others also call, "less than perfect." He has a chromosomal "abnormality" which results in William's syndrome. He is full of joy, he has a wonderful smile, and he will be a friend to anyone that wants to. Unfortunately, there are some that only look at his differences, instead of the wonderful things he has to contribute. But that is not the case at youth group! He is liked, loved, and accepted!

Since the first time he came, invited by one of the most "popular" kids, my heart was excited. I was excited because everyone treated him with dignity and respect. I was excited picturing Nichole as a teenager, being a part of youth group, with her "typical" peers loving her and accepting her. I want this for Nichole! I want her to love going to places where she will see her friends and where she gets to be a teenager, with no other labels attached.

A few weeks ago, Andy and I went to a conference called "Parents as Presenters." There were parents that had children with many, many, many different disabilities. There was a mom who also had a son with William's syndrome. She shared that someone had said to her once, "It is too bad your son is afflicted with William's syndrome." Her response, "Afflicted? What are you talking about, look at him, he is not afflicted by anything, he loves life and he has more excitement and joy than most other people!"

Some people might think that this young man at our youth group is "afflicted" with William's syndrome. Some people might think that Nichole is "afflicted" with Down syndrome. The reality, is that they are not "afflicted." Their hearts can soar. They enjoy life, they not only understand the meaning of joy, they live it, every day.

Tuesday, October 21, 2008

She is beautiful!

1 What are your thoughts?
Today at Ellie's pre-school I got talking to one of the other moms. She was just telling me how wonderful and beautiful Nichole is. She was saying that Nichole had the sweetest baby face and she was just the nicest baby she had ever seen. She then asked me how I got such a nice baby, and what she should do to get one just as good.
I said, "It is easy, just have a baby with Down syndrome!"
We live in a pretty small town, so I assume that "everybody knows" that Nichole has Down syndrome, but that is not the case. My friend was so surprised! She looked at me with big eyes and said that she did not look like it, and especially since Nichole is so beautiful!
I take no offense in a comment like that, I actually like to hear when someone is surprised to find that a baby with Down syndrome is actually beautiful. It means that they have seen the baby for the baby, not the diagnosis, and it means that their eyes are opened to the truth, the truth that children with Down syndrome can be beautiful and oh so sweet!
Maybe it doesn't bother me because when Jennifer was born, I refused to believe that she had Down syndrome because she is so very cute! I suppose I thought that kids with Down syndrome were, well...not beautiful. And Jennifer is without a doubt one of the cutest kids that walk this world!
So I hope that today, my friend walked away blown away, blown away by the beauty of "imperfection." By the beauty of the almond shaped eyes. I know I am smitten! And I say this not only because I am the mom, but because she IS in fact a beautiful girl, just like her big sister.

Monday, October 20, 2008

My Baby Girl

0 What are your thoughts?
I love my baby girl. She is so sweet. As time goes by we see more and more of her personality. Already we know that she has a soft heart. I pray that as she gets older, that we will be able to love her and encourage her in the days when she might come home with a broken heart over a comment someone made about her, or a word she was called. Those will be hard days, and as a mom I wish they will never happen.
Yet, she is loving. She will reach out to people that most of us might walk by. Those that we might think do not look the "right" way (if there is such a thing.) But instead she has a smile, and I know that she warms these people's heart. They see how beautiful she is.

These are some fun pictures of Nichole and I.
I was trying to get her to sign for me and giggle (she has a few signs she can make, even though she has recently switched from signing "mom," to signing, "all done" )

Sunday, October 19, 2008

The Creed of Babies with Down Syndrome

1 What are your thoughts?
I read this when Nichole was two weeks old. Hope you enjoy it too.

My face may be different

But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To Him I'm no different
His love knows no bounds
It's those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I've chosen
Will help me get started
For I'm one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I'll do it as you do
But at my own pace

Saturday, October 18, 2008

"That's too bad", I thought to myself

1 What are your thoughts?
A few months back, someone shared with me that there was lady who's daughter was expecting a baby. As is routine with all pregnancies, there was an ultrasound. The ultrasound suggested that there was a possibility of Down syndrome.

This lady was devastated, thinking about her daughter's future, and her grand baby's future. She saw little hope. All she knew, were probably the very prevalent misconceptions about Down syndrome. She probably pictured individuals with Down syndrome that were raised in institutions, or those that were very low functioning, for lack of early intervention services.

My friend asked this lady if it would be okay if I called her. She agreed, and as soon as I had her number, I gave her a call. We did not talk for very long, but I offered for her daughter to give me a call. After all, we were also given a "possibility" of Down syndrome. Because there was no amniocentesis, and there would be none because of the risk of miscarriage. This family was holding on to the fact that the baby could be born, "normal."

Just yesterday, I saw my friend, and I asked if the lady's grand baby had been born. The baby is now two months old. I then asked if the baby was born with Down syndrome. No, this baby does not have Down syndrome.

That is too bad. I thought to myself. They do not know what they are missing. I can picture them relieved at the birth as they were told their baby was "perfect." It is too bad that they will never see unconditional love through almond shaped eyes, or that they will not get to celebrate milestones as miracles. They will not see shades of colors that they never knew were possible.

There are many blessing that they will have with their new baby, for every life is a gift from God. They were chosen by God, from all people, to be the parents and the family to this particular and precious baby. They will indeed have many glimpses of God.

I realize that many might think that they were "saved" from a life that might seem broken. Yet, there is nothing in Nichole that needs to be "fixed."

I remember when our friends came to see us at Mayo hospital, a year ago, when Nichole was there. Bill said to us that when he heard Nichole had Down syndrome, he was very excited, he wanted to say, "All right!" Back then I smiled, thinking it was pretty neat, like maybe he was referring to, "We are friends and we both have children with Down syndrome! " But now, I get it Bill! I get it!

"That is too bad," I thought. Because life with Nichole is surprisingly rich in all aspects. Life with Nichole is beautiful. Bill and Kristin knew that we were on for a great treat in life, and now we know it too!

Friday, October 17, 2008


1 What are your thoughts?
It is late, so today will be a short post.

Nichole is sick. Now that winter is near, this might be the start of nasal congestion and more sickness throughout. I am not looking forward to this!

It is a time where we might just want to stay home and not have her go to many public places. I might even try to find someone to watch her while I go to MOPS. (Sigh)

If you remember, keep Nichole in your prayers, that her immune system will be strong, and that all that needs to drain will drain well in her little ear canals and her nose.

Thursday, October 16, 2008

A Hard Reality

2 What are your thoughts?
I am a part of a forum for parents of children with Down syndrome. This forum was a wonderful life line for me when Nichole was first born. I remember looking at all the beautiful pictures of the children, and feeling that life was after all...normal.

There were children of all ages, with families form all different backgrounds, but we all have something in common. Our child has more chromosomes than yours! I have been able to meet some of these moms face-to-face. The bond we share is powerful.

Recently, because of Sarah Palin and her son Trig, there have been numerous articles and web-sites that attack individuals with Down syndrome. We have shared these in our forum, and we are taking action in the little ways that we can. From flagging blogs, to sending letters to networks or movie producers. I have to take it personal, because after all, they are talking about my child.

I am sad to know that for some people, Nichole's life is disposable. I am angered to know that some people might find me irresponsible for choosing not to be tested, for choosing not to have an amnio, and for choosing not to have an abortion. I am angered that these people think that I have placed a burden to our society. If they only knew, that she has brought no burdens, but many countless blessings.

It confirms in my heart that I have a job to do. I have to be an advocate for Nichole, and for all other children with Down syndrome. These wonderful people that have an extra chromosome have more to offer to society that than they will ever take. Their lives are so rich, and so deep. Our world would be a better place if all children with Down syndrome were given the opportunity to live. If their mother's had been given answers and hope as they faced a daunting diagnosis.

Today I read a great article and watched the video of a beautiful girl with Down syndrome that was voted Homecoming Queen at her high school. They showed her with her friends and family. These people get it! This is what I want for Nichole, this is one of my dreams. That others will see the beauty of her life, that she will be accepted, that she will be wanted. That she will have friends, go out to have ice-cream, go out to movies. That she will have a boyfriend, and someday get married. That she will go to college and find a job that she loves. I want her to be a part of life!

God did not make a mistake when he created people with Down syndrome. He knew exactly what He was doing. He knew our world needed them. I like what Andy said to me once, "maybe Down syndrome is not a mistake (genetic mistake) but an alternative"

And a beautiful alternative, because if you hold my baby girl and look into her eyes, I guarantee you, you will see love, and you will never be the same.

Wednesday, October 15, 2008


4 What are your thoughts?
So here we are, half way through October. It means National Down syndrome awareness month is half-way over.
I have posted every day. When I joined the 31 for 21 I was not sure I would be able to do it!

Again, I would love your input.

What has been helpful so far?
Is there something you wish you knew more about?
Any new questions?
What have you learned so far?
What have been the most helpful, or, your favorite posts?

I really want to know if your perspective on Down syndrome has changed. If there is anything that you had never thought about before, or if any of this is new to you.
You hear form me by reading this blog, I would love to hear from you too!

I do love comments (yes, I really do). That way I know where to go next.

I have thought about posting some of my journal entries, from the time that Nichole was first born, until now. But then I think, would anyone care to read that?

So, today it is your turn to write and leave a comment.

Tuesday, October 14, 2008

Down syndrome: Contagious

4 What are your thoughts?
Written and used by permission of Wendy Holden

Down syndrome is a genetic disorder characterized by a triplication of the genetic material on the 21st chromosome. This trisomy occurs with the first division of the developing zygote, as a result there is extra genetic material present in every cell of the individual. Recently, science has discovered that this cellular abnormality is highly contagious. As result, family members (and even friends) of individuals with Down syndrome often find themselves exhibiting dramatic changes due to this "something extra" permeating their bodies at the cellular level. These changes manifest themselves in a number of ways. Something extra in the visual cortex results in parents who view the world differently. In addition to seeing things in an entirely new light, these parents also report having an increased ability to focus on what is important. Spontaneous appearance of tears of joy have also been confirmed. The section of the brain used in logical thought undergoes dramatic changes.

Parents suddenly find themselves able to comprehend and discuss complex medical procedures. The ability to decipher long strings of acronyms appears almost immediately and it is not uncommon for affected parents of newborns to be able to differentiate between ASD, VSD and PDA. Familiarity with G-tubes, Pic lines and the NICU is another side effect.

Over time, the entire nervous system is transformed, enabling parents to perform tasks previously thought impossible. These changes result in individuals finding the nerve to advocate before large crowds, speak to classrooms of medical students and educate the population at large about issues they are passionate about. These changes are closely tied in to dysfunctions in the verbal abilities, which makes it virtually impossible for parents to bite their tongue. Often, individuals who previously considered themselves reserved will find themselves outspoken and effective communicators.

The pulmonary system is altered to a dramatic extent. Parents report having their breath taken away at the slightest prompting. The cardiovascular system develops similar vulnerabilities and reports of hearts pounding loudly and swelling unexpectedly are not uncommon. One mother reported that her heart skipped a beat when her son smiled at her for the first time. The extremities are also altered. Arms reach out to strangers for support, and in turn, hands comfort and nurture those in need. Legs strengthen and balance improves, allowing parents to stand firm in their convictions and walk without faltering, even when shouldering a heavy load. Scientists are baffled by the widespread scope of these symptoms. Equally perplexing is the response of those afflicted. Parents readily acknowledge fundamental changes in their being, however, almost universally declare a preference for their new, altered level of functioning. "I wouldn't change a thing" is a common refrain. Apparently, the presence of a little "something extra" enhances the lives of individuals fortunate enough to be infected.

Remember, this was written by Wendy Holden, not me!

Monday, October 13, 2008

My thoughts on Sarah Palin

1 What are your thoughts?
I promise that I will answer all the questions that were posted or e-mailed. Many of these questions have been answered in other posts. Since I am (finally) done taking in general about the "facts" of Down syndrome, I will start by answering the other questions.

So I am finally getting to the very first questions I got :)

What do I think about Sarah Palin?
If she was a man, nobody would be questioning the commitment to a family (such as nobody is questioning if Obama is really committed to his family). Because she is a woman, it seems to be a big deal that she is running to have such a highly demanding job.
Her husband, Tod, is a say-at-home- dude. I know of many, many families, where the mother works, and the father takes care of the children.
I know, in our family, I would trust Andy 100% with our girls. He would do just fine having them all day long. Would he enjoy it? Absolutely not! Would I enjoy having a full time job? No way! I love my job staying home with our girls, but this is our family, our choice. Every family has their own dynamics.

As far as I know, Trig is a very healthy baby. If so, he does not require any special care. He is a baby, just like any other baby. Yes, I am sure that he will be going to physical therapy, speech therapy, and occupational therapy. In our area, (as I believe it is in most of the United States,) many of these services are provided in the home. So I am not taking Nichole to all these places, rather, her therapists come to our house.
I have also recently read of a family that chose not to receive what we would call "professional" therapy, and they took it upon themselves to help their daughter who has Down syndrome. She is a beautiful, very high functioning child. Her parents have done something right even without the help of therapists. I have no idea what Palins have chosen to do, but I am very confident that Tod is fully capable to provide for Trig's needs.

So, now I am curious, what do ALL of you think about Sarah Palin? Her husband? And her beautiful son?

Sunday, October 12, 2008

Beautiful Poems

1 What are your thoughts?
My friend Vonda Weikert wrote these two poems for her son Noah. They are absolutely beautiful. Enjoy!

In the spring of 99,
a gift from up above,
was sent to me from heaven
to cherish and to love.
He's not what I expected,
and at first I was afraid,
but who was I to question,
the choice that God had made.
For he gave to me an angel,
so precious and so sweet,
and I thank Him each and every day
that the two of us could meet.
I named my angel Noah,
he's the love that I adore.
He needs me more than ever,
but I truly need him more.
I'll turn my times of sorrow
into happy times at last.
The crying and the heartbreak
will be memories of the past.
We'll look forward to the future
and the milestones that it holds.
We'll battle all the boo boos, the sniffles and the colds.
We're together for a reason,
It was clear right from the start.
I'll be loving him forever, till death our lives will part.


I pushed my little baby out,
they handed him to me.
I looked into his tiny face,
he was as perfect as could be.
Then the doctor said “Down syndrome”,
and my joy turned into fear.
How could he have Down syndrome,
for he was so sweet and dear.
His perfect hands,
his tiny feet and chubby little toes.
His jet black hair, his dark brown eyes,
and little button nose.
They have to be mistaken.
The diagnosis just can’t be.
Then they handed me the test results,
and it was plain to see.
My baby has Down syndrome.
Those words cut like a knife.
My baby has Down syndrome,
and he will for all his life.
I cannot make it better.
It will not go away.
But I can continue to love him,
with every passing day.
For God gave me a child with Down syndrome,
as it was in the plan He had.
And as time goes by I realize, Down syndrome isn’t bad.
My son has filled my heart with love,
and brought me so much joy.
He is my little angel. . . . . . . my perfect little boy!!!!


Copyright © 1999-2002 Vonda Weikert. Used by permission of the author.

Saturday, October 11, 2008

People First Language

1 What are your thoughts?
This is a MUST read.

If you were to be involved in any type of public service, especially if dealing with people that have different "abilities." One of the first things that you would learn is something called People First Language (PFL).

What does this mean? It means that people are people first, regardless of their diagnosis.

Let's say I am diagnosed with migraine headaches.

Would you say...
She is migraine or She has a migraine

Would you say...
Migraine people or People with migraines

The diagnosis, does not account for who I am. I am person first, and I just happen to have a migraine.

Now let's do a little exercise. Let's talk about Down syndrome...
She is Down's or She has Down syndrome
Down's babies or Babies with Down syndrome

My daughter is NOT Down syndrome.
Down syndrome is something that she has, not something that she is.
Down syndrome does not define who she is as a baby.

Nichole is a baby FIRST, and she just happens to have Down syndrome.

Andy will be the first one to say he does not hear it all the time, sometimes he slips and does not use PFL. Me, on the other hand, hear it every single time. It is possible that I have been talking to you and I have gently corrected you, please do not take it personal, it is just that my baby is not her diagnosis. She is a baby, really, weather she has Down syndrome or not.

On a similar note, I was asked

Is it...
Down's syndrome
Down syndrome

It is Down syndrome. But, in other places, like the UK, it is Down's syndrome. So, it really does not matter, just for as long as you use People First Language. :)

Friday, October 10, 2008

Ellie's Sister

3 What are your thoughts?
I am often asked about how we have explained Down syndrome to Ellie. At her age, it would be unrealistic to try and explain chromosomes. We could talk about how her sister is "different," or the challenges that she will have in her life. However, we have chosen not to do so.

If there is something I really want for my daughters, for Ellie in particular, is for her to see Nichole as her sister, and nothing more. I want them to play together, laugh together, and be friends. The last thing I want is for Ellie to look at her sister as "different."

We have said a few things, like it will take Nichole a little longer to grow-up. Ellie accepts it. She does not care that her sister is taking longer to grow up. After all, how would she know the difference?

We do not talk about how Nichole is different, because Nichole, and all children with Down syndrome, are more alike other children that they are different. Instead, we talk about all the things that they can do together, and the things that they will be able to do as they grow up.

Someday, Ellie will start to notice that her sister is not like everyone else. I am aware that someday, Ellie will start asking questions about her sister. It breaks my heart to know that Ellie will start wondering if her sister is different because of other people. Someday, she might hear someone say something about Nichole, that she is "slow," that she "can't talk well,' or that, "she is retarded." (If you have not read my post on Down syndrome and health, PLEASE do so)

One of my dreams for Ellie, is simple. That she will love her sister. I want Ellie to be an advocate, I want her to stand up for Nichole. Most of all, I want her to want her sister. I know maybe some day, Ellie could be embarrassed of Nichole at some point in life, and I cannot tell you as a mom how hard that would be.

Are we going to tell her that Nichole is different? We will, and when we do, this is what we will say.

Your sister is different. Many people think that she is not perfect because there are some things that are harder for her, or she is not very good at. They think those things are bad. But, there is something all of those people do not know, but we do.
Nichole is different, because God knew our family needed her to be this way. She is different because she has a big heart, a heart that can love better than any other. Her eyes are different. She is able to see people the way God sees them, regardless of who they are, what they look like, what they smell like, or if they are popular or not. She has a harder time talking because what she has to say, she can say it with a hug, with a smile, with a kiss. What she has to say is that God's love is abundant, and pure, and real.
She seems not to be as smart as others, but in reality, she is smarter than most of us, because she knows about what really matters in life. She knows all about love, joy, peace, kindness, gentleness, goodness.
Your sister is a very rare gift to this world, and God has chosen us to be her family. We are so lucky! God will bless you so much because she is your sister.

Before Nichole was born, I was excited that our girls would only be two years apart. I pictured them being best friends forever. Doing all sorts of things together. Like I have shared before, this was the hardest dream to let go off. As a matter of fact, I still have to continually let go of it, I would be lying if I said I don't think about that anymore.

But there is something I do know. Nichole is the best sister Ellie could have. God knows exactly what He is doing. Because of Nichole, Ellie will have a bigger heart. Because of Nichole, Ellie will learn to see past the outer shell of people and look into their hearts.Because of Nichole, Ellie will know how to love unconditionally. A "typical" sister, would not change her life in this way.

They will play together, laugh together, and be friends. As a matter of fact, I really do believe that the will always be friends, always best friends.

There are two other little girls with Down syndrome in our church. Ellie loves them both. She wants to play with Ryley because she is a "big girl" and she is fun (and has a pretty cute brother). The only difference Ellie sees in Ryley is that she cannot talk as well, but she knows it is because Ryley has a big heart that loves a lot. She knows Ryley loves her, and that is enough for Ellie. And there is Jennifer, one of her best friends. There is nothing different about her.

And Nichole...Ellie will tell you in the future, there is nothing different about her either!

And in the small ways that she is different, I hope someday Ellie says, "I want to be more like my sister." And, "She is my closest friend."

Thursday, October 9, 2008


5 What are your thoughts?

We celebrated Nichole's Birthday with family and some friends that have truly become like family to us. Nichole is loved by so many people.
When Nichole was born, I quickly realized that the way we dealt with her diagnosis, would pave the way for how others would look at her. I decided, a year ago, that I would share my daughter. I knew that as everyone else got to know her, they would fall in love with her and see the beauty of her life, with an extra chromosome and all.
I would say that we have a wonderful "family" that celebrates her life with us. A "family" that is able to see the blessings that have come packaged in this little baby. A "family" that without a doubt would say babies with Down syndrome are the sweetest babies (and Ellie too!). A "family" that has blessed us in return.
Thank you, to all of you, for showering our family with love. We are so thankful for you, and we love you all, very much. You will forever be in our hearts, and you will forever be part of our family.

Nichole was not so sure about her cake, so mommy had to help her eat it. She loved it!

Grandma Chachi loves Nichole.

So do her aunties, Ale and Luisa (Lindsey is in the picture too, she is the most fantastic babysitter, and an auntie too)

And here area some pictures of Nichole's (and ours) new family)
Lindsey and Connie Glandon (we missed the rest of the family)

Grandpa Ken and Grandma Darla

Randy and Marilyn, who watch Nichole every Wednesday so I can be involved with youth group.

Wednesday, October 8, 2008

God Chooses a Mom for Disabled Child

1 What are your thoughts?
I do not think of Nichole as disabled, because she has so many abilities. Yes, there are many things that she cannot do, but there are many that she can do. If she is disabled in the world's eyes, I know I am disabled in God's eyes. So what is worse, to be disabled in a world that will pass, or disabled in that which is eternal?

I came across this poem when Nichole was little. I have posted it here before, but I thought I would post it again. Even though I cannot relate to all the poem, these last verses are so true, and are the only ones I am writing.

I do not like the title, but then again, Erma wrote it a long time ago. I am grateful that she was able to see the beauty of those that are "less than perfect," and capture it in such beautiful words, and from a mother's perspective.

God Chooses a Mom for a Disabled Child
Erma Bombeck

There is a woman that I will bless with a child less than 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 child, she will see it as few people 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."

Tuesday, October 7, 2008

Health and Down Syndrome

2 What are your thoughts?
Some of you have been asking and wondering what are the health issues associated with Down syndrome. Is there any special care?
Like with any child, there may be some health problems, and like with any child, you will do whatever it takes to ensure that your child stays healthy and provide the best resources for him or her to develop.

It is very true that there can be some serious health issues associated with Down syndrome. Some people believe, that only 20% of babies with Down syndrome make it to delivery, and the other 80% are lost in natural miscarriage (this is not factoring abortion numbers). So every person you ever see with Down syndrome, is a true miracle!

People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.

Nichole has a small hole in her heart. She will be having an echo (a heart ultrasound) next month. Our Cardiologist has not been able to hear the heart murmur in the last couple of visits. He said he was hopeful that the hole in her heart has closed on its own (God is a perfect physician.)
Nichole has issues with Reflux, they will last a little longer than the average baby, but then again, Reflux is common in all babies.
Nichole gets her hearing and thyroid checked every six months. So far, so good!
Even though colds and ear infections are more common in children with Down syndrome because of their smaller passages and poor drainage, Nichole has never had an ear infection. She is however, congested quite a bit, but in the large scheme of things, it is not a big deal.

Low muscle tone. Almost all individuals with down syndrome have low muscle tone. This can be a physical trait, but this is what takes us to therapy each week. Our bodies have muscles everywhere! Our legs, our arms, our core, our tongue.
It takes children with Down syndrome a little longer to achieve certain milestones, such as rolling, sitting, crawling, standing, walking, running, jumping. Think about it, if you had to make your muscles work twice as hard, it would take you a little longer too!
Our tongues are powerful muscles, and we do not think much about that. Some babies with Down syndrome have a harder time when it comes to feeding. Nichole was not able to nurse well until she was about 5 months old, but she did just fine with a bottle. This also means that talking will come a little later. It is amazing how much you learn about all that your tongue does when you talk as you take your baby to speech therapy, talking is really hard work! And so many of us take it for granted.

There are a little extras that we do because Nichole has Down syndrome. We do these extra things because we want her to develop and reach those milestones. We have Physical Therapy, Speech Therapy, and Occupational Therapy. We basically have a whole team of professionals that are here to guide us as we help Nichole grow and develop. How I wish I would have had that with Ellie! It is not a weekly burden, because as a parent, you will do whatever you have to do, and a few hours a week, are no more than a few TV shows. It is that simple, and it is about priorities.

Now for the tougher one. I struggled in how to answer this question, so I will try to answer it as best as I can. Many individuals with Down syndrome have some degree of mental retardation. Retardation, means, that it takes them a little longer to learn things. It DOES NOT mean that they will not, but only, that it takes longer. Intelligence has been measured by IQ. Most individuals with Down syndrome fall into the mild to moderate mental retardation. However, each individual is unique. If there was such a thing as an IQ test to grade the emotional/intuitive level of a person, children and adults with Down syndrome would rank MUCH higher than a typical person. Unfortunately, we only test for Developmental milestones.

I love what my friend Christine from a Down syndrome forum had to say.
Is Nichole retarded, or is she slow?
She is neither.
She has Down syndrome.
She therefore does have some degree of what is clinically known as mental retardation. What this means can vary from individual to individual.
Yes, it may take her longer to learn certain things; however, in some areas she may not be delayed at all.
Until she shows us differently, we assume that she will be able to do the same things as everyone else.
People need to look past the physical features and the stereotypes they associate with these features and look at the individual. They will surprised at what they find.

Which brings me to the word "Retarded." The only "R" word that a person with an intellectual disability deserve is the word "Respect." Next time your friend is acting silly, or someone does or says something stupid, please, do not say, "You are such a retard, "or, "That's retarded." When you say that, you are talking about a people group, a people group that includes my daughter, and they deserve the same respect that you and I do. Before you use that word, think about who you are referring to, what you are implying. Would you say, "You are such a Nichole." Or even more, would you use a derogatory name that is associated to a people group. No, you would not. Because you know that it is not appropriate, you know that it is degrading and wrong. The word retarded is the most offensive word in the English language. It is a word that is used to describe something stupid, something with a fault, something with a mistake, and it is said in expense of my daughter. These are the people that need to be respected, but most important, valued! Because they are God's creation, loved by God.

That was heavy stuff. Did not know I would go there, but I believe this is part of raising awareness. And I hope that a little seed is planted in your heart. These are important issues, and issues that affect all of us directly or indirectly.

Going back to our original topic. There are health issues, and it is important to be aware of these. But like I said before, health issues are present in all babies, weather they have Down syndrome or not.

Other than that, having a baby with Down syndrome is NO DIFFERENT than having a baby. She is a baby! I feed her, change her, get her dressed, give her baths, hug her, kiss her, sing to her, play with her, and love her. Much like I did with Ellie, and much like you would with any other baby.

Monday, October 6, 2008

Physical characteristics of Down syndrome

5 What are your thoughts?
There are certain physical characteristics of individuals with Down syndrome.
Each individual is unique, so a person might have only some, or all of the following features.

  • Nose-The bridge of the nose is small and flat. This accounts for the cutest button nose you have ever seen!
  • Eyes- These are the beautiful almond shaped eyes. I believe this is the most defining characteristic. Some individuals have what is called Brushfield spots in their eyes which are most common in blue eyes. I love Nichole's eyes, they are captivating!
  • Mouth- Sometimes the upper lip is "lazy" due to low muscle tone. Sometimes their tongue sticks out, again, because of low muscle tone (remember, the tongue is a muscle.) This contributes to the juiciest, most delicious kisses!
  • Teeth- For babies, teeth may come in late, and in random order. They tend to be small, and sometimes unusually shaped.
  • Ears- They tend to be small, and lay lower on the head. One thing is for sure, Nichole will be the first Stumbo not to have a "big ear" complex.
Edited to say: No, I am not suggesting that All Stumbos have big ears. There are a few that have shared with me how they always thought when called "Dumbo" it was because of their big ears, rather than a silly rhyme. In our immediate family, the big ears do apply to ALL members, including me :)

  • Stature- Individuals with Down syndrome tend to be smaller. Remember, the best gifts come in small packages!
  • Hands and Feet- Smaller, and fingers and toes tend to be shorter (and chubby!). The palm of the hand may have only one crease, called the simian crease. The feet sometimes have a gap between the first and second toes with a deep crease on the sole where the gap is. These are the sweetest hands that will ever touch your face, and the perfect feet for flip-flops!
Babies and individuals with Down syndrome may resemble one another because of similar features, BUT, they resemble their families more than they resemble one another. Remember, 46 of their chromosomes are perfectly normal, and ALL their chromosomes came from their mom and dad.

I will be very honest, but one of the hard comments that a parent can hear (at least for me) is when Nichole is compared to another child with Down syndrome. "She looks just like such!," or "She looks just like my niece when she was a baby, she has Down syndrome too!" I am aware that my Nichole looks like she has Down syndrome, because, she does! Yes, there are certain facial features that are similar, in a way that you would conclude that all white people look the same, all Hispanics look the same, all Asian people look the same, all black people look the same, or all Arab people look the same. There are specific characteristics that make people groups look similar, but we would all agree, that each individual has it's own unique characteristics that sets them apart from anyone else regardless of their race. It is the same with my daughter and all the beautiful children with Down syndrome.

Nichole does have almond shaped eyes, like most people with down syndrome, and she has a button nose. Her eyes are blue, like her daddy and sister, her nose is like Ellie's, just with a small bridge, her mouth is like her mommy's and so are her ears. As a matter of fact, Nichole looks a lot like Ellie did as a baby. Even now, Ellie cannot tell the difference between her baby pictures or Nichole's. The only way to tell sometimes, is looking at the eyes.

All individuals with Down syndrome are unique and special. They were carefully crafted by God. We are all God's work of art, individually and fearfully created. God's works are wonderful! I know that full well.

For more on this subject and pictures, please click here.

Sunday, October 5, 2008

Focus on the Family: Coach Stallings

0 What are your thoughts?
Coach Stallings was a football coach in Alabama. Throughout his career, he had a faithful and dedicated helper whom coach Stalling loved. This young man was Johny. Johny had Down syndrome; and Johny was his beloved son.

Dr. Dobson interviewed coach Stalling after the recent death of Johny. It was a moving interview, and one that will touch you. If you easily cry...have tissues on hand!

Here is a direct link to the broadcast

Hope you enjoy!

Saturday, October 4, 2008

On Mosaic Down syndrome

1 What are your thoughts?
One of the beauties of the world of Down syndrome is the friendships that are formed. I have mentioned before that the bond that we have as parents is very unique and very special. Strangers soon become friends.
Just a few days ago I met a new friend, her name is Kristy. She knows so much more about Mosaic Down syndrome than I will ever know! I asked her if I could "use" some of her knowledge and share it here since after my first post, there were a few questions about Mosaic Down syndrome.

Here is what she had to say:
(MDS stands for Mosaic Down syndrome; Ds stands for Down syndrome)

"The majority of people with MDS do experience all the same developmental and cognitive delays as a person with Ds. The only difference is, they sometimes reach a milestone (like crawling and walking) a few months before a child with Ds.

The exception to this rule is that children with MDS are more delayed in speech than their peers with Ds. And, we are finding a large majority of them with Apraxia. (a speech condition where the child began talking and then stops and uses no words or very few)

Also, because people with MDS have a percentage of Trisomy 21 cells in their body, they have the exact same risk for all the same health conditions as a person with Ds.

And, as you said, many do not have the physical characteristics as one with Ds, or those characteristics are just not as prominent.

Also, research suggests that up to 4% of those with Ds have MDS. In actuality, this number is much higher. There are many who are misdiagnosed with T21 who actually have MDS. In a recent independent study done by International Mosaic Down Syndrome Association 75 families were asked how they received their diagnosis. Of those 75--15% were first diagnosed with Trisomy 21 Down syndrome. This misdiagnosis and those who go undiagnosed would bring the number much higher than the outdated research states.

I hope this has helped some to explain about mosaic Down syndrome.

I am the mother of a 22 yr son with MDS....
The president and co-founder of International Mosaic Down Syndrome
And, I write a daily blog on mosaic Down syndrome and Down syndrome called Mosaic Moments.

Oh yeah.... One more "tidbit"...
There are actually FOUR different kinds of Down syndrome...

Trisomy 21
Mosaic Translocation "

Thanks so much Kristy!

And if any of you have any more questions, I am sure Kristy would love to have you stop by her web-sites. Her blog is wonderful! She has so much information and lots of touching personal stories of different families, including her own.

Friday, October 3, 2008

Statistics on Down syndrome

10 What are your thoughts?
Before talking statistics, I want to share some pictures of Nichole with your from Wednesday. We went to a Pumpkin Patch and tried to stay warm.

By the end of the day, Nichole was exhausted and read for a car ride so she could snooze.
Here she is in the stroller, tired, and pretty bundled up.

And here is Ellie. She had fun with her friend Brooklyn.
She did not want to bring a pumpkin home though.

Statistics on Down syndrome

A few people asked about statistics, so I will try to answer as best as I can. I actually spent some time yesterday looking at books and different websites. I am hoping that some of my friends (those dear friends that I have met thanks to Nichole) will read this post and maybe add some of their comments with the information that they have. Remember that these are estimated numbers, there are no statistics that are 100% accurate because of abortion rates. Also, these are numbers for the United States (I will see if I can find anything about Mexico.)

  • 1/733 babies are born with Down syndrome
  • 5, 000 babies are born every year with Down syndrome
  • 9/10 women that are given a pre-natal diagnosis of Down syndrome chose to have an abortion! (This is a problem. Medical professionals deliver the news as a death sentence and almost always offer the option of abortion before explaining to parents what it is, or before connecting the expecting parents with a family that has a child with Down syndrome. It is sad to know these expecting parents are being cheated of a precious baby by withholding the truth and information about what Down syndrome is day-to-day. can you tell I am passionate about this!)
  • It is believed that if there was no abortion at all, the incidence of having a child would be somewhere between 1/150 or 1/100, which is the same as having twins. (By no abortion I mean, not only related to Down syndrome, but abortion in general)
  • Most babies with Down syndrome are born to parents that were NOT given a pre-natal diagnosis
  • 80% of babies with Down syndrome are born to women under the age of 35
  • Currently there are more than 400,000 people living in the US with Down syndrome
  • More than 50% of all miscarriages are caused by a genetic abnormality (I wonder how many of those were little babies with Down syndrome!)
  • Once a woman has a baby with Down syndrome, her chances of having another child with Down syndrome is... 1% (yes, only one percent, the same as having twins, unless it is Translocation Down syndrome)
If you are looking specifically for statistics on Down syndrome and abortion, you want to read THIS POST.

Thursday, October 2, 2008

Nichole's First Birthday! October 2nd

10 What are your thoughts?
Today is Nichole's First Birthday!
Time goes by so fast, but for once, I am not wondering where my baby went. She is still my baby, and I have enjoyed her tremendously. Most parents get to hold their babies for a little while before their children are eager to be on their own, move around, and away from their parents. I get to hold my baby a little bit longer and enjoy her soft skin and little hands close to my face. She is a joy and a real blessing.
I believe she already knows that she is deeply loved by her family, and those friends that have now become her family as well.

Here is Nichole playing her drum and singing.

I have read birthday stories from other moms that have children with Down syndrome. I never understood why some of them described birthdays as hard, but now I know.
A year ago, Nichole joined our family and she brought with her a diagnosis. A diagnosis that would shake our world, at least my world, to pieces.
I had dreams and hopes for a beautiful, healthy baby girl, and in an instant, that all seemed to be taken away from me.
A year ago, I faced the ugliest, darkest, most shameful parts of my heart. Parts that not only am I ashamed of, but parts that surprised me. I never knew that there was in me such hardness. My heart was an evil place, with little of God's love.
A year ago, I held a baby that I wished was not mine.
But God...He knew exactly what He was doing. And through all my tears I was confronted with the fact that I was "selfishness" in a pure, and raw form.
Psalm 139:23 says, "Search me, O God, and know my heart: test me, and know my anxious thoughts. See if there is any offensive way in me, and lead me in the way everlasting."
This was my prayer, my all time prayer, and I meant it when I offered myself to God. So here I was, being tested, with God searching my heart, and with Him choosing a little baby with Down syndrome, to lead me in the way everlasting.
Yesterday I was helping Ellie memorize Psalm 51:10, it says, "Create in me a clean heart, O God, and renew a right spirit within me." My spirit has been renewed and continues to be renewed because of Nichole.
I praise God because He did not allow me to stay in the muck of my depression for long. I praise God because even though my heart was dark, His love was abundant. I praise God because I know He forgave the depth of my darkness. I praise God because He showed me unconditional love. I praise God because He took me by the hand, and showed me the truth about His beautiful gift, His precious miracle, His princess...Nichole.
The value of her life is immeasurable. The lessons she has taught me, are countless. She is just a baby, but she is full of love, peace, gentleness, goodness. She is in the business of changing hearts, and transforming lives.
I am not the same person I was a year ago. When I look into Nichole's almond shaped eyes, my heart is touched by love itself, maybe by God.
Nichole is one year old today. I am so proud of her. She is a beautiful and healthy baby girl.
She is the baby that I always wanted, I just did not know it. She certainly is the baby that I needed, because I needed much changing, because my heart needed to be fixed. She is God's own hands in my life, and I am humbled.
Happy Birthday Nichole. You are a precious gift to all of those who know you. You are transforming hearts as you show us what love looks like. You are an angel, a little angel that I get to hold.

These are some pictures form the day Nichole was born.

Wednesday, October 1, 2008

What is Down syndrome?

10 What are your thoughts?
Down syndrome is the most common (but rare) genetic condition in which an individual has an extra copy of the 21st chromosome. A typical person has 46 chromosomes. People with Down syndrome have 47.

How does it happen? Here it comes, Biology 101 on Down syndrome.
All cells reproduce, either by mitosis, or meiosis.
Mitosis basically means the cell copies all of its contents (including it's 46 chromosomes) and then divides to produce 2 daughter cells.
Meiosis is the process in which reproductive cells divide. The egg and the sperm do not copy themselves, instead, they "split" in half, resulting in an egg having 23 chromosomes, and sperm having 23 chromosomes, to make a total of 46 when they come together.
In the case of Down syndrome, the 21st chromosome (typically in the egg) fails to "split," resulting in Trisomy 21 (three 21 chromosomes) when it is united with the sperm.

What causes Down syndrome? Why does an egg fail to disjunction on the 21st chromosome?
We don't know. There are only speculations. It is believed that maternal age is a factor (since women have ALL their eggs present even BEFORE they are born, and therefore, the older the women, the older the eggs).
I was 25 years old when I conceived Nichole. At that point, according to science, my chances were 1/2500.
Now, the following is MY OPINION. Please do not take it at face value.
I believe that the reason they think maternal age is a factor is because women 35 years and older have all the pre-natal tests done. Women 35 and younger, many many times chose not to have these tests. It makes sense that you will see ANY condition more often in a population that is routinely getting tested, as opposed to the population that selectively chooses to do so.
Eighty percent of babies with Down syndrome are born to women 35 and younger!

There are three different "types" of Down syndrome.
1) Non-disjunction Trisomy 21. The most common. 92% of people with Down syndrome have this type. It is basic meiosis where the 21st chromosome did not disjunction. (As I explained before)
2) Translocation Down syndrome. This is where one of the 21st chromosomes (either from sperm, or cell) is "broken." When it gets "broken" it "splits" in two, therefore, resulting in an extra 21st chromosome. This condition is believed to be hereditary. It is believed that 6% of individuals with Down syndrome have Translocation Ds.
3) Mosaic Down syndrome. Both the cell and the sperm are "typical." The non-disjunction occurs somewhere down the line of cell division resulting in an individual that has some "normal" cells, and some "Trisomy" cells. It does not matter how many "normal" cells there are, what matters is where those normal cells would be. For example, if the cells that form the eyes are not affected, an individual would sadly not display the beautiful almond shaped eyes characteristic of Down syndrome. Only 2% of individuals with Down syndrome have Mosaic Ds.
Some people believe this might also be hereditary. There is little to no difference in development of individuals with Mosaic Down syndrome as opposed to the other two types, UNLESS, it happened at the LAST STAGES of cell division. In some cases it is even possible for a person to have Mosaic Down syndrome and not know it.

What does Nichole have? Plain Non-disjunction Trisomy 21.

Are there different "levels" of Down syndrome? Or is there such a thing as a "low case" or "severe" case?
No, Down syndrome is Down syndrome. Development is directly linked to health issues.
Nichole would be considered "high functioning" (I know, she is a baby!) but she has had no serious health problems. Other babies that have serious health problems have a harder time "catching up."

Can doctors predict how well Nichole will do?
No. Nobody can. Nichole is Nichole. Most often doctors and other professionals talk about things that babies or individuals with Down syndrome can or cannot do. But, nobody can tell me what Nichole can or cannot do, she will show us what she is capable of, and she is doing amazing! She is her own person, and she will develop in her own rate, at her own time.

Is there any way to prevent Down syndrome?
Yes, there is a way that will guarantee that you will never have a child with Down syndrome. Do not have children :) Other than that, there is nothing that you can do or not do to prevent Down syndrome, or to cause Down syndrome for that matter. It is a God thing, it is a gift, and very few are fortunate and blessed to know this beautiful and amazing road.
God chose only a few of us to have these precious babies with a little extra something :) Even though I like to think it is because we are "special," I know for me it is because I needed much changing. It is a heart and life altering miracle. I am humbled and honored God chose me to be Nichole's mom.

Is Down syndrome a burden? ABSOLUTELY NOT! It is the greatest blessing our family has ever known. And Nichole continues to touch lives and hearts of those around her. There is nothing "less than perfect" about that.

Psalm 139
For you created my inmost being,
you knit me together in my mother's womb,
I praise you because I am fearfully and wonderfully made
your works are wonderful,
I know that full well

God does not make mistakes, especially, when there is an extra 21st chromosome :)



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