October is Down syndrome awareness month...

and I am totally missing the boat.  I had plans to blog every day in October about Down syndrome.  I wanted to tweet about it and post facts every day in my facebook status.

But instead, so far in October, I haven't done a thing to advance awareness about Down syndrome.  Instead, I've spent the last three days in and out of bed.  I've been crying for no reason.  I've been too overwhelmed to think about raising awareness.

I've been too overwhelmed to brush my teeth.

Depression sucks.

Two nights ago, at bed time, Sergei brought Polly up to me in my room.  She crawled up onto the bed, placed her cup of water on the side table, and leaned in to nuzzle her cheek to mine.

"Mom, you know what?" she asked, looking me square in the face with her beautiful, large doe-like eyes.

"What, honey?" I whispered, tired from the dark blanket that had been inexplicably thrown over my head for the last few days.

"You're my best friend."

"Thank you, Polly."  I started to cry.  "I needed to hear that."

Even in the midst of the ups and downs in my life, I am profoundly aware of the gift God has given to me in my children.  All four of my daughters bring light to a life that is often in the dark. But Polly and Evie, especially, brighten my days with simple things: a hug, a smile, words of love and adoration.

It is important to know the facts about Down syndrome.

But I believe it's even more important to testify to the fact that my daughters with Down syndrome are living, breathing anti-depressants in my life.

I am so thankful to have them. What a privilege to get to live day by day with that kind of awareness.

EmmaLee McDonald (12 yrs. old) wrote this story, "Pete the Purple Pumpkin" in honor of her brother Toby, who has Down syndrome. WOW!

Pete the Purple Pumpkin

By EmmaLee McDonald

(Dedicated to EmmaLee's little pumpkin Toby, who happens to have Down syndrome)

There once was this purple pumpkin named Pete. Unlike any other pumpkin, Pete was purple. Every fall he hoped he would get picked. But every fall he didn’t get picked, he wondered why. He thought, “Sure I might be purple, but you can still carve me and eat my seeds.” The only thing different was his outside. People would look at him and then laugh. Every pumpkin thought that Pete was the kindest, sweetest pumpkin ever! They also wondered why Pete wasn’t getting picked. Now, Pete was getting older and the farmers said that if Pete didn’t get picked this fall, he would have to be thrown away. Pete didn’t want this to happen, so he hoped this fall would be different. Two days went passed and people only looked at him and laughed. Then, the next day, a little girl with a pink tutu and a tiara looked at Pete and said “I want this one.” Pete was so overjoyed. This girl loved Pete the most. Once this girl carved him, she placed him on her porch. That evening, she saw all of the neighbors on her lawn. Hoping they weren’t making fun of Pete, she ran out. Then, she realized what they were all staring at. It was a light brighter than any she had ever seen, shining from within Pete, without even one candle. It was a light that shown from within. Then, people came from far and wide to see this bright, little pumpkin. Just imagine what the world would have missed if Pete were simply thrown away. Even though people may look different on the outside, true beauty comes from within.

Big thanks to EmmaLee for sharing her story with me. Great job!

(EmmaLee is twelve years old. Amazing, huh?)

Leave EmmaLee a comment telling her how much you love Pete the Purple Pumpkin :).

21st Chromosome info at Museum of Science and Industry

I find it funny how excited we get...


when we see something about Down syndrome.

We went to the Museum of Science and Industry today.

It's a great museum. We all had fun.


(My niece Karli (who now lives in our basement) was really excited!)

The change in me, and the love I have for my kids
strikes me at odd times.

The fact that I struggled so much at first with Polly's diagnosis
of Down syndrome
with time has become the vehicle that produces overwhelming joy.

If there wasn't darkness, I would not be able to appreciate the vast contrast of light.

(This saying was painting on a wall at the museum.)


"I have learned to love the darkness of sorrow, for it is there I see the brightness of God's face." - Madame Guyon

31 for 21 bloggers! Listen up!

A story about YOU, 31 for 21 bloggers is up at Examiner.com.

Go here and leave a comment with your blog handle. Let's spread the word about our kids! This is an opportunity for the public to know you are blogging for Down syndrome awareness.

Yay! Down syndrome awareness month!

Big shout out to Tricia at Unringing the bell for doing the interview for the story and for dreaming up 31 for 21 and to RK at Just RK for the button allowance.


Grab This Button

The Creed of Babies [And People] with Down syndrome

Chris Burke! Down syndrome Awareness

I love Chris Burke! Loved him in Life Goes On. We own the first season and we watch it together over and over. Thanks Chris!

For parents who aren't ready to celebrate Down syndrome

I read a blog yesterday from a mother of a child with Down syndrome. She loves her daughter but she's not ready to celebrate Down syndrome.

I would like to validate this mom. If Down syndrome awareness month is difficult for you because you are not ready to fully embrace the world of special needs; it's okay.

It's okay.

Your journey is simply that: yours. And it is valid.

Every person is different. Some parents get over the shock of a diagnosis in two days and sign up to run a Buddy walk at the end of the month. Others (like me) take a lot longer to process what a child with a disability means to the family.

My first year with Polly was slow going. It was painful.

I was jealous of other mothers who accepted Down syndrome as a small part of their children and moved on. They handled everything so much better than I did. Guilt added to my feelings of failing. It made it difficult to reach out for support. Guilt held me back from allowing myself to grieve. It actually prolonged the process.

Emotions like jealousy and guilt waste energy that would be better spent getting to know your child. They suck up time that could be used seeking out love and support. It's energy you need to take care of yourself.

If you are grieving the loss of the child you expected: It's Okay. Grieve.

If you don't want to go to a Buddy Walk this year. It's Okay. Don't go.

If reading upbeat blogs about families thriving in the world of Down syndrome makes you feel inferior. It's Okay. Don't read them.

Give yourself grace.

If you are forcing yourself to do things your heart is not ready to do, that's not awareness, that is peer pressure.

The only thing to do is love your child.

Even if you don't ever get to the point of running a Buddy walk.

It's Okay.

Evangeline

Here are five things about Evie:

1) Evie has some emerging new skills: 1) putting things 'in,' 2) and seeking out toys to play with.
2) She finds Sergei and I repeatedly throughout the day for hugs and cuddles . Yay!
3) She loves getting on the school bus in the morning for school.
4) Evie hated baths when she came home from Ukraine. Then she started liking them and then, wham, hated them again. Now, she is tolerating baths again. It's cyclical.
5) She loves her big sisters. When Zoya and Elaina come home from school she's all hugs and smiles!

More alike than different, Down syndrome Awareness month

Vote for Andrea Roberts of Reece's Rainbow in People Magazine

Vote for Andrea Roberts from Reece's Rainbow at People Magazine as your Reader's Choice Hero.

Vote as many times as you want until October 8. The $10,000 Grand Prize Winner will be revealed in a future People Magazine.

Click here for more information about Reece's Rainbow.

What a way to help more kids with Down syndrome find forever families!

And an easy way to support Down syndrome Awareness month.

Polly's Baby Montage

Photo and video editing at www.OneTrueMedia.com


I did this montage the first year of Polly's life for
Down syndrome Awareness month.

Enjoy! The kids have all really grown!

Different types of Down syndrome?

First question: "Can you tell me the differences between all 3 (I hope that is right) types of Down Syndrome? I get a little confused on the differences. Thanks so much!"

Thanks for asking, Molette!

Yes, there are three types of Down syndrome:

Trisomy 21, Translocation and Mosiac.

Here's an explanation of the three types from the National Down syndrome Society:

Down syndrome is usually caused by an error in cell division called "nondisjunction." Nondisjunction results in an embryo with three copies of chromosome 21 instead of the usual two. Prior to or at conception, a pair of 21st chromosomes in either the sperm or the egg fails to separate. As the embryo develops, the extra chromosome is replicated in every cell of the body. This type of Down syndrome, which accounts for 95% of cases, is called Trisomy 21.

The two other types of Down syndrome are called mosaicism and translocation. Mosaicism occurs when nondisjunction of chromosome 21 takes place in one-but not all-of the initial cell divisions after fertilization. When this occurs, there is a mixture of two types of cells, some containing the usual 46 chromosomes and others containing 47. Those cells with 47 chromosomes contain an extra chromosome 21. Mosaicism accounts for about 1% of all cases of Down syndrome. Research has indicated that individuals with mosaic Down syndrome may have fewer characteristics of Down syndrome than those with other types of Down syndrome. However, broad generalizations are not possible due to the wide range of abilities people with Down syndrome possess.

Translocation accounts for about 4% of all cases of Down syndrome. In translocation, part of chromosome 21 breaks off during cell division and attaches to another chromosome, typically chromosome 14. While the total number of chromosomes in the cells remain 46, the presence of an extra part of chromosome 21 causes the characteristics of Down syndrome.

Keep the questions coming friends! Thanks!