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 18, 2008

How will Down syndrome affect Nathan’s health? (Part I)

Before I begin, let me be clear - children with Down syndrome can be as healthy as any child without Down syndrome. What sets them apart is their higher than normal incidence rates for certain medical problems. On a side note - considering the amount of information I’d like to share I’ve decided to break this into three digestible sections.

The Beginning

When Nathan was born and the postnatal diagnosis of Ds was confirmed the immediate medical concern was Nathan’s heart. Forty to 50% of children born with Ds have a heart defect that requires corrective surgery. The second immediate concern was Nathan’s digestive system - 10 to 20% of children with Ds are born with gastrointestinal malformations. Now, reflecting on this time in the hospital, I remember not knowing this information until after the tests were complete. When the neonatal doctor gave us these statistics he also gave us Nathan’s clean bill of health! Thank God.

Children born with Ds have also have a higher than normal risk of respiratory infections including sleep apnea, which is the temporary interruption of breathing. When Nathan was about 6 months old we brought him to the Ear Nose and Throat Specialist – Nathan was having some breathing issues that we felt warranted a visit for the check-up. After some invasive tubes down his throat we learned everything was just fine – Nathan would grow out of his issues. We return in one year for a follow-up.

Children with Ds also have an increased risk for respiratory infections. Nathan’s first cold was at eight months of age. Let’s pray he continues down this healthy non-cold road!

Tomorrow we’ll discuss vision, hearing, hypothyroidism, and Leukemia.

Babies With Down Syndrome: A New Parent's Guide

Friday, October 17, 2008

Isn't it funny the little things we notice...

Every wonder why the children's menu is so large that only adults can hold it and why the alcohol menu is sized just right for kids?

Thursday, October 16, 2008

Thoughtful Thursday...

I can't begin to tell you how much this below message means to me. Nathan and I received a nice little package yesterday in the mail and this was inside the cover of one of his new books.

Wednesday, October 15, 2008

Pack your bags! We're all going on a trip to Holland!

When Nathan was born I was given a poem written by Emily Perl Kinglsey, titled "Welcome to Holland," from just about everyone that knew of its existence - even my sister gave me the poem. Without reading it, I knew what it was about because those that didn't give me the poem told me all about it. I never read it until today.

Emily Perl Kinglsey's son Jason has Down syndrome and the poem is her reflection of what it's like to have a child with a disability. This poem can speak to each of us regardless of your abilities - the moral of the story is - everything in life is what you make it. You choose.

by Emily Perl Kingsley

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that
Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Tuesday, October 14, 2008

Nathan's Parenting Magazine Debut!

A Special Joy 11: Babies With Down Syndrome

In honor of National Down Syndrome Awareness Month in October, Parenting Magazine is showcasing photos of beautiful babies, who happen to have Down Syndrome.



You should check out the other pictures - they are adorable!

Monday, October 13, 2008

Enjoying Fall

Nathan had a really fun weekend - he spent time at the Italian Festival, celebrated his mim's birthday at the Cheese Cake Factory, and went on baby swings for the first time! He really loved the swing as you'll see from these short videos.



Sunday, October 12, 2008

Guest Blogger - Carol Breen

"What a beauty she is! But looks aren't everything and it's important to me that as her personality continues to develop Jeff and I instill the right values.

Through the years, things that once had a stigma or were looked at as "different" have become mainstream. An important part of that is teaching children from the time they are born that differences are good and should be embraced - whether they are physical, mental or cultural

That's one reason I'm glad Luci has two friends with Down syndrome. These two boys are absolute joys and she loves playing with them. She has no idea there is anything "different" about them and she won't unless society teaches her there is.

My hope is that if someday Luci hears a cruel joke or a nasty comment, her reaction will be one of shock and confusion. I hope she grows up thinking that having friends with disabilities is completely normal...that having friends with different levels of mental or physical abilities is the same as having friends with different eye or hair color...that she grows into the compassionate person I know she can be if nurtured."