DownRightAwesome

From the moment Milo was born and diagnosed, I’ve been writing to you all. Figuratively, that is. I’ve wanted to release my words out there and let them find a home where they may. I’ve wanted to produce documentaries to show the beauty of our everyday and how far we have come and how far we have to go. I’ve wanted my voice to be added to the thousands of others sharing this journey so that when another couple is delivered “the news”, they can see another example of how they are not alone. You see, that’s what the community of bloggers out there did for me. They kept my head above water in those early months, and I will never be able to express my thanks. I have tremendous respect for all the wonderful families who have offered their experiences so that others may learn from them. Words simply fall short.
I’ve been hesitant to write. I’m nervous to post. I’m scared to allow myself to be publicly vulnerable. The past 15 months have been a time of observation and introspection for me. They’ve been a time filled with grief, awe, confusion, painful and beautiful growth, and most importantly a time filled with tremendous love. In addition, I’m no Hemingway.
But with encouragement from our lemonade maker, Colette, I will throw my hat into the proverbial ring. We may have differences of opinion, and different approaches to advocacy, but what I find the most comforting is that we experience many of the same joys, and many of the same challenges. I humbly add my voice to the numerous others to raise awareness for my son and others living with Down syndrome.

Hopefully I’ll get posts out more often than Halley’s Comet comes around, but in the meantime, know that my son is AMAZING and cherished, know that there is much joy in our life, and know that I am beyond thankful to my family, friends, and new friends, for what they have done for me and my little family thus far.
I hope that I can return the favor and support you.

Amy

To New York City I fly
The polar opposite appeals
Rerun my day, I won’t
I prefer to clear the board
Live the story of the now
Forgive me, then

Concrete, fast streets
Live up to your promise
Fill me, the determined
Make me desire your pulse
And beat to your drum

Laden with stop lights
You still command go!
By example I must proceed
Fast, forward

By Colette Cosky

Milo & Dexter's First Play Date

It was a spring day in San Diego. I took Dexter, a few months old, to Balboa Park seeking sun and solace. Not too far from the grand fountain I pitched his play gym on a strip of green grass and waited for Amy Liebengood, Milo’s mom.

Dexter at Balboa Park Waiting for Milo

I sat there alone for about 20 minutes. Dexter was in baby heaven under a muslin canopy I rigged over his gym. As he batted toys, cooed and fell asleep drunk on fresh air I looked around and pondered. During this time I was still grieving and trying to make sense of something I never expected. I was also trying to go a single day without crying.

At one moment my random string of thoughts focused on disability and impairments. As I watched complete strangers young and old pass me by I thought how many of us would be disabled or impaired without science? Hear me out.

The fact is if Synthroid and surgery were not medically available I’d still be dealing with Thyroid cancer. And if glasses had never been invented Jason would be legally blind. And then I remember I was once dependent on glasses but took care of that with laser surgery. How would I get around without being able to see clearly beyond 5 feet? I certainly wouldn’t drive. And then I looked beyond my family and at the strangers passing by and thought how a majority of these folks probably depend on something to help what could have been a disabler in their life. Bad hearts, failed organs, mental health challenges, high blood pressure and on and on the list ticked off in my head.

How easy it is to forget that without science a lot of us would be leading a much more challenging life. I admit I took it for granted. Heck I had to remind myself I had eye surgery at my own pondering party!

So then I turned to Dexter, and warm tears filled my eyes. Some of the hardest things you’ll have to overcome still have no treatment. It was at this moment I told myself I’d find out more about what research has been done and maybe do something to remind folks, who’ve been helped by science of the past, to support the science of the future.

Amy arrived, sat down and I said, within a few minutes or so, “tell me about the research”. I was so happy to hear about everything on the horizon but there is still a lot of work to be done.

You never know how a child will react to the arrival of a sibling. Very quickly we learned that Eloise, our 3-year-old, would be serial squeezer. I think we’ve said “not so tight” over one thousand times to date. As soon as Dexter is out of our arms, whoosh goes Eloise in a blur of blondeness to wrap Dexter up in her super squeeze. It’s endearing and frightening all at once and basically everything we hoped for. Here’s to loving with wide-open arms!

When I was on KPBS Midday Edition with Maureen Cavanaugh I mentioned my experience with Down syndrome being a bit like Chutes & Ladders. If you don’t know the game it goes a little like this. Some moves can send you high up the board others can have you sliding back to where you began. During the month of October life was all ladders. Dexter’s personality was starting to show and he was doing great. Ladder.

The NPR series was really happening, Down Right Awesome was becoming a reality. Ladder.

Our Buddy Walk team kicked butt, and Infantino and Kelle Hampton said “yes” to Everybody Plays. Ladder!

In November though, things went a little south.

Things slowed down a bit and it gave my mind time to wander into places I’d rather it not go. I worried because Dexter seemed like he wasn’t babbling as much and “da, da” was the only sound he was making. I also worried that he wasn’t trying to crawl as much. Chute.

Over Thanksgiving I got caught off-guard by an older woman wandering through the Avila Barn Shop near San Luis Obispo. I had Dexter wrapped up close to me snug in the carrier while I happily inspected jars of jam, hot cocoa mixes and handmade ornaments. When I looked up, there was the woman. She looked at Dexter and then to me and said “sorry” and winked. This all happened very quickly though in my mind it runs in slow motion. In a knee jerk reaction, before I realized what she was apologizing for, I said “no worries”. I have a tendency to wing out my arms and bump people with my elbows so I assumed I’d done it again, and she had mistakenly thought she bumped me. Within moments though I understood what she was “sorry” for. By this time she was lost in the crowded shop and I was left standing with words that needed to be said but no place to go. Chute.

I did not share this with anyone at the time it happened and carried it with me for a bit before I even shared it with Jason. His words, “f-her” – and I know he meant that in the best possible way. I shouldn’t let someone who was obviously misinformed get me down. But I did. I am human.

Since that day I have had time to reflect on that missed opportunity to educate the woman in Avila Barn and until recently I’ve just beat myself up for words not spoken. What helped me turn the corner was a deeper look into why I missed her remark and the answer is quite awesome. Her remark flew over my head at first because Dex and I were just hanging out. Yep, just a mama and her chubby marshmallow man (he’s quite chunky, very white and super sweet) enjoying the day. Down syndrome was the furthest thing from my mind. Ladder!

I am so excited to wrap up the last couple of weeks in 2011 with my family and feel really grateful for all the ladders and the lessons learned from those darn chutes. We have so much to be happy for. Joy for our world!

~ Colette

Be a Santa Cause

With Christmas upon us the best gift I can imagine is acceptance for my son and support for research that can make a big difference in his life. If you’ve got someone on your list that just has everything and you’ve resigned to just get something, maybe try being Santa Cause this year. Consider making a donation in their name to the Down Syndrome Research and Treatment Foundation.

DSRTF’s mission is to help accelerate the development of treatments to significantly improve cognition, including memory, learning and speech, for individuals with Down syndrome.

Around the table each year we take a moment to share what we are most thankful for. This year my reply will be family & friends, both old and new.

I’ve always heard that you should count your friends during the tough times.  And when I did, the number was greater.

To you, our friends who’ve given us your love, time and support, we extend the sincerest of thanks.  We wish you and your family a great Thanksgiving.

Blogging is hard mostly because you need to keep up with the regular post part. I promise I will try to get one up every week and do a better job manning the post!

Okay so I intended a Whale of a Post, felt lukewarm about a portion of it and now it is a minnow. Anyway I want to talk a tad about UCSD, upcoming fundraising and awareness initiatives and 501c3 filing . Next week I promise a look into my amazing experience working with Kelle Hampton, kick-butt photographer and all-around awesome gal.

Dissecting the Science

I have now been to UCSD twice. The first time I met with Dr. Mobley to talk about the upcoming KPBS series. The second time I took Kelle Hampton with me to tour Dr. Mobley’s lab and meet the scientists behind some incredible discoveries. I am slightly apprehensive about writing this portion of the post for 2 reasons. The first is I’ve never been awesome at science and feel out of my league. The second, I’m afraid to mix classified with declassified intel. So I am going to keep it very top level.

Each time I have left UCSD I exit more fired up than before. The information I am given, which is actually provided in a very easy to follow way (mostly), fills me with hope, direction and purpose. I want to impact the speed at which the cognitive research and clinical trials are happening and I know that will take funding, education and awareness. I have always been surprised at how little people know about what’s happening whether is it is a fellow mom with a child who has Down syndrome or one of the many doctors I see for Dexter.

Obviously I can’t continue to be Miss Vague in my posts and I don’t intend to be. One of my next big goals is to help report snippets of the science (that is declassified) in a way I think most people can digest it (this has nothing to do with comprehension and everything to do with how overwhelming and not easily transferable the information can be). I’d also love to get some podcasts for parents and pediatricians made and ask Dr. Mobley if he’d be up for some parent-Mobley Q & A’s. We’ll see.

What’s Next?

We have a go big or go home attitude here at Down Right Awesome. So when we’re planning things they tend to come in intertwined batches, planned for significant impact. Right now in our brainstorm cloud, we’re thinking about a high profile auction, a pediatrician education symposium, a new take on support groups, podcasts (as previously mentioned), guest chef or food truck gathering events, and more. While things seem a little quiet on the DRA home front just know good ideas are cooking.

501c3-to-Be

A 501c3 status is another thing we’re working on. I am taking a page from my fabulous friends at Saving tiny Hearts. They take 96% of all the money they raise and give it directly to research. For us this seems like the most effective path to help meet our goal of turning research into reality for our kids. This task is not a small one, and we’re on it. We’re hoping to file in the next week or two and then we can officially start taking donations, sell our Sweet T’s (without crappy tax implications) and hold fundraising events. We will be posting an order form for the t-shirts shortly and we’re even looking to advertise them with Facebook and Google ads!

Signs don’t hoist themselves into the air. Donations don’t just appear. And at last check, shirts can’t wear themselves either. Point is, it takes you, and without your support last weekend’s highly successful event would never have been possible. Thank you everyone! Over $10k raised & 84 Walkers!