17 Sep 06 Buddy Walk Talk

What a great day! What a fun weekend! Marley had a great time with her Aunt Angela who came to visit and join us at our first Buddy Walk. If it weren’t for Angela, we may not have found out about the event.

We were really amazed by the support we received from so many people from different aspects of our lives. You all contributed to us raising almost $600 to benefit national education, research and advocacy initiatives, as well as local programs for Down syndrome. Thank you to everyone. We shattered our initial goal of $100 and even blew past our revised goal of $500. You want to know the most incredible thing? We didn’t actively solicit funds. The only way people found out about our involvement in the event was through this site. Thanks for reading and for caring.

As promised, we’ve uploaded some photos to our Flickr page. We have also set up a Buddy Walk Photo Group on Flickr where we hope other walk participants will add their photos from across the country and beyond.

12 Sep 06 Ramping up for the Buddy Walk

Thanks so much to everyone who has supported us in the 2006 Buddy Walk to help raise funds for people with Down syndrome. We’re overwhelmed by your generosity. The response has been so great that we’ve raised our goal from $100 to $500. We’re now at 79% of reaching our goal.

We’re also excited to learn that Nicole and Marley’s Aunt Angela will be visiting us this weekend and joining us for the walk.
Our previous Buddy Walk post generated a comment from a very friendly woman named Michelle who also has a daughter with Down syndrome. We hope to reach out to her soon. Michelle, if you read this, thank you. We were very touched by your message and look forward to connecting soon. We found a link to the Trisomy 21 Online Community which we will get involved with as well.

Things have been pretty busy. We’re still unpacking and refining our new routine which will change again when we get Nicole started in her early intervention programs.

Nicole has her first doctor’s appointment next week. Coming out of this appointment we expect to get a referral into the state-run programs for kids with special needs. It will be interesting to see how her assessment goes because she is very strong. Most kids with Trisomy 21 (Down syndrome) have significant muscle tone problems but Nicole is already starting to hold her head up, has a great grip and a powerful kick. Who knows, maybe there’s a gold medal in her future at the Special Olympics.

02 Sep 06 Support us in the 2006 Buddy Walk

On September 17, 2006, we will participate in the NYC Buddy Walk to raise funds for people with Down syndrome. As most of you know, our daughter Nicole was born with Down syndrome.

We have set a modest fundraising goal since we’re pretty new here. We’d love to increase our goal if we get a great response from you. To support us, visit our pledge page or click the logo below and make a donation.

We’ll be sure to post some photos our day at the Buddy Walk after the event.

19 Jul 06 An extraordinary life

What an overwhelming week this has been! Hopefully it’s the start of something extraordinary.

On Friday, July 14th, our second daughter, Nicole, was born. Five hours after she arrived, we learned that she had several characteristics of Down Syndrome. This was a shock, especially under the fog of sleep deprivation. Now, five days later, the initial round of testing indicates that she does have the condition. There’s nothing easy about this, especially given everything else that’s going on in our lives, but it is less of a shock because we’ve had time to come to terms with how it will change our lives. Leaving family and friends behind in Toronto at this time seems even more difficult, given the new circumstances. Fortunately we’re going to a place (New York City) where we hope to find incredible services and support.

All of this got me thinking. Most people want an ordinary life speckled with extraordinary moments that make life memorable. It is very rare that life takes on an extraordinary turn of events that makes every day meaningful.

Anyway, we want to share this news with those of you reading this site. We are fine. We have much learning to do, and more importantly much living.

“Down syndrome is a naturally occurring chromosomal arrangement that has always been a part of the human condition. The occurrence of Down syndrome is universal across racial and gender lines, and it is present in approximately one in 800 births in Canada.” Canadian Down Syndrome Society

The National Down Syndrome Congress also has published some great facts that put all of this in perspective. There is also a great piece that Nicole’s aunt Angela found called, “If People with Down Syndrome Ruled the World.” If you have time, it’s worth the read.

We will keep you posted as our life becomes a little bit more extraordinary.