Sunday, August 25, 2013

Our First Down Syndrome Event

The Down Syndrome Network of Oregon puts on a yearly event at Oaks Park for families who love someone with Down Syndrome. We haven't done anything "Down syndrome" related yet. I have met with other mama's on my own, but Jesse hasn't. I was nervous but excited and my boys were thrilled. When I told Jesse that I couldn't wait to go he hesitantly said "but aren't we already doing the Buddy Walk?" I was able to coax him into going by telling him that we will arrive late and leave early. Well guess who was the last to leave? We were just living up to our title of the "family of long goodbyes".

When we arrived, we were met by a group of families all with a common bond. The feeling of love that emanated from the group was powerful. We met children with Down syndrome that were around Ellie's age up to a senior in high school. I even had the opportunity to meet a beautiful lady who is 20 weeks pregnant with a baby girl with Down syndrome. I was so amazed by her and her husband and their courage to come out and embrace the Ds community. I overheard Jesse talking to the dad and offering his own advice. It was heart warming to hear him talk about Ellie in such a positive and uplifting way. I think we were meant to meet this couple that night. I think it was good for Jesse to be on the advice-giving end too, a new role for him.

The DSNO had a huge spread of food including desserts, drinks, t-shirts (which I wish I would have grabbed one!) and posters for us to put up at work for the Buddy Walk. There were a lot of teenage volunteers there helping all the kids as "ride buddies".  Many of these kids have a sibling with Down syndrome and were just awesome kids. It was very well organized and had such a welcoming vibe.

We spent the evening with our new friends, and mostly with my self-proclaimed new BFF (famous Iris's mom) see previous post about Iris, she is the coolest kid ever! Scroll to the center of that post and watch her dancing to "Thrift Shop" if you haven't yet. The boys and I have watched it at least 20 times! Will and Luke rode on as many rides as they could squeeze in with Eric their new buddy (famous Iris's big bro) and they are already planning the next time they can see Eric. I am looking forward to play dates with these moms and kids, I can already sense that lifelong friendships are being formed because of Down syndrome. I am continually telling myself I can't believe how this is all turning out. How scared I once was, and how now I can't imagine my life any other way. My heart is full.

Ellie and Iris smoochin!
Luke, Eric and Will
Speaking of the Buddy Walk and my heart being full, we have formed a team called Team Ells Bells. I am so excited to have our friends and family come out and walk with us to honor Ellie and others with Down syndrome! We are raising money for the DSNO and I had to choose a goal amount. I put $1000 down, unsure if that was too big of a goal but I thought it sounded good.  I posted Ellie's page on my Facebook and in 6 days we surpassed our goal. I am so grateful and humbled at the outpouring of love and support! I can't even explain how much this means to us. I contacted our PR group at my work and they added the DSNO to their list of charities, they will match employees donations dollar for dollar! Amazing!  Many of my co-workers, even those thousands of miles away have donated to Ellie's team. Our friends are surprising us left and right with their generous contributions. This money helps with programs, scholarships, and events like the Oaks Park family night! 

Here is Ellie's team page if you want to check it out: 

I can't wait to tell Ellie about her first Buddy Walk and how much her friends and family love her. Although, when seeing that scrunchy faced soulful grin, I think she already knows.

Love to you all.
My song choice for this post is Somewhere Over the Rainbow, What a Wonderful World by Iz. This is a song we played at our wedding and is one of my all time faves. At the Oaks Park event, the DSNO founder's daughter Megan (who is 15 and has Down syndrome and gorgeous red hair) signed the lyrics to this song as her mama sang it. I was in tears, it was beautiful and the perfect end to the evening.

Wednesday, August 14, 2013

They Are All So Happy

I have an announcement. Ellie, my sweet precious Ellie, is NOT always happy. She just isn't. In the 7 months that she's been on this earth, she has been everything. Happy, sad, frustrated, excited, curious, mad, stubborn, the list could go on. Name an emotion and she's probably experienced it. 

Pre-meltdown phase
Let the drama begin!
Will looks around like someone is going to help him!
Seriously mom, HELP ME! (says Will)
When I tell people my daughter has Down syndrome I almost always hear "oh, they are all so happy", or "they are all so sweet". I am trying to figure this phenomenon out because so far, Ellie is a lot like her big brothers. She spits up like them (rrr!), she giggles like them, she smirks like them, she cries like them. When people refer to her as "they" it feels like she's part of a whole different species, do you get what I'm saying?

There is a preconceived notion, myth, or stereotype about people with Down syndrome that "they" are always happy, or "they" are always sweet. Well Ellie wants me to tell you this.. "she" is just herself. It's just like saying "all gingers have no souls" when we know the truth, only some gingers have no souls. Hehe. 

So that is my PSA for the day. People with Down syndrome are each unique individuals just like you and I. They laugh, they cry, and sometimes, damn it, they have throw-down diva fits like it's their job!! 

My song of choice for this blog post is "You are so Beautiful" by Joe Cocker. I love this song, and it makes me think of our Ellie girl. BUT I also love that my dad once arrested Joe Cocker in Cali back in the early 70's. Famous family story right there!