Nathan is Hebrew and means "gift from God" - we couldn't have been more blessed than to have been chosen as his parents!

Thank you for keeping up-to-date with Nathan. We hope you visit often and enjoy experiencing our son's journey as much as we do. Please feel free to leave comments.

We love hearing from everyone!!!!

Saturday, October 11, 2008

A life of potential - making a difference

Nathan received the most wonderful compliment today from his physical therapist!

I am constantly asking Nathan's therapists about how he's developing and how he compares with other children with Down syndrome. Today, I asked when she thought Nathan might crawl or walk because so often children with Ds may not crawl or walk until much later than most typically developing children. She thinks that Nathan is strong and has the strength and motivation to crawl and walk - he just needs to work on his coordination. She estimates Nathan will be crawling in a month and walking by about 14 months - we'll see!

During this conversation she said that she was so glad to be working with Nathan because he has shown her the developmental potential of children with Ds! I almost cried! I was so proud of Nathan!!! She gave our family the credit because of how much we work with Nathan when his therapists aren't here. What she neglected to recognize was her role in his success - she deserves just as much of the credit! All of his therapists do! Nathan is an amazing little boy who has continued to defy the odds. I pray more people see his potential and feel blessed by it.

Thursday, October 9, 2008

You can pick your friends...

You've heard it before - you can pick your friends but not your family.

This story begins at my first board meeting of the Ds Resource Center. I was informed by a mother of a daughter with Ds about what she believes our future holds. She said that we would "lose" friends now that we have Nathan and I should be prepared for it. I couldn't believe it. That thought never crossed my mind - ever. I asked her why? She said that some people simply can't handle being around a child with Down syndrome. When I came home I told Danny what was said and how surprised I was to hear that - I have friends with children that have special needs and I've never felt embarrassed to invite them to into my home or felt uncomfortable in their presence. But, that's us.

Danny and I made our predictions but so far it hasn't happened. Maybe that's because Nathan is a baby. Maybe as he gets older things will change. What I do know is that those people who are embarrassed by my son and can't handle being around us were never our friends to begin with and our family will be better off without them. See Ya!

Hopes & Dreams Wall

One of the more moving additions to this years’ Buddy Walk was the Hopes & Dreams Wall. A literal wall where people could put in writing their hopes and dreams for those they love touched by Down syndrome, themselves, or Ds in general. The DSAHRC has hired an artist to take these messages and the idea behind the wall and paint a reflective piece that will be auctioned off next October. I am so excited about this!!! We will also take the painting and have prints and other things made for all to enjoy.

What I’m even more excited about is being a part of the Resource Center and watching these hopes and dreams to true.
I’d like to share with you a few of those dreams:

"For Jen to become a famous model, like the role-model she is for us!"

"For Nathan: May all your dreams come true and may you grow up to be whatever you choose to be!"

"to live in NYC and work in a theater on Broadway!"

"For all children with special needs to live as independently as they can."

"We want our daughter to be a properly employed taxpayer! And, very happy."

"It is my dream that when people look at my daughter, they only see the beautiful person she is."

"My dream: for Nathan and other children with Down syndrome to teach and inspire others."

"I wish for all to understand Down syndrome and embrace them all."

"For the world to know what we already know."

"My dream is for you to grow up with a life filled with love and family around always. Love you so much."

"For my daughter to get a full life experience – college and marriage. Love Dad"

"You are our miracle girl: we love you!"

"My hopes and dreams for you my lovely child is to live each day of life to the fullest & always show your beautiful smile."

"My dream: Congressman Nathan Terry!!"

"I wish for their success and happiness and wish that everyone could be as nice and loveable as the ones with Down syndrome."

Wednesday, October 8, 2008

What caused Nathan's Down syndrome?

At birth, Nathan was diagnosed with the most common form of Ds - Trisomy 21.

But what exactly is it?

At conception, Nathan received 23 chromosomes from Danny and 23 from me - each of our cells contain 46 chromosomes, or 23 "identical" pairs. Chromosomes are made up of strands of DNA - think of them like a spiral staircase carrying your genetic code. Every cell in your body contains these 23 pairs of "identical" chromosomes (22 determine genetic make-up and the 23rd determines gender).

In order for a fertilized embryo to develop into a fetus, cell division and duplication must take place. It is during the initial cell division that Nathan's Ds came to be - his 21st chromosome did not divide - it was copied as a whole. This is called nondisjunction, which literally means, "not coming apart." Once the initial nondisjunction occurred each division continued in exactly the same manner.

When Nathan was born Danny and I began asking - did we do something to cause Nathan's Ds? Danny really took it hard blaming himself and it broke my heart. But, we soon learned that it wasn't Danny's fault and the doctors said it wasn't something I had done either. However, my research has found, that although I did nothing to cause Nathan's Ds, that 90% of the time it is the mothers 21st chromosome that doesn't divide properly. Is that hard to deal with? Sure, but I'm over it. Does that mean if Danny and I have another baby that this could happen again - it's not impossible but highly unlikely - that's why it's called a genetic anomaly.

The above picture is what Trisomy 21 looks like at the cellular level. As you can see, there are three copies of chromosome 21.

So how does the extra chromosome affect Nathan? What could be in his future?
I'll tell you tomorrow.