Monday, August 26, 2013

Join The mAe Team

Here's my push. First of all, when we had Mariana I knew very little about Down syndrome. I did whatever the doctors said. I made my way when she was 4 mos to therapy and dismissed much of what they told me. You see, Mae did all the things she wasn't supposed to be able to do and she didn't do the things she was supposed to do. Somehow my mind began to view her as a Down syndrome prodigy. She was fine. And frankly the idea of Ds becoming our family thing seemed exploitative. Clearly I was having some kind of post-partum mind melt. It was a weird involuntary level of denial that I only recognized when she wasn't sitting up at 8 months. I wasn't surprised she wasn't sitting up, I was surprised I hadn't really noticed. I know.

I did connect with the Down Syndrome Association of Jacksonville, or DSAJ as the cool kids call it, and I saw certain things on Facebook that I would click through and read. I learned many things that are available in Jacksonville. I was also linked into national and international organizations that lamented the lack of programs for individuals with Down syndrome. Here I was in one of the richest environments I could have hoped for and I wasn't taking advantage of much of anything. Cue the inappropriate guilt.

When we went to Hope Haven in April I ended my day with Debbie Revels of the DSAJ. She told me about more programs for adults with Down syndrome. I learned that the DSAJ covers some of the cost of therapies at Hope Haven's Down Syndrome Clinic. There's no paper work or going in with your hand out. It just happens before you get your bill. Even though Scott and I are able to provide what Mariana needs, having someone toss a little help your way with no expectation of further involvement feels like an umbrella of kindness in a storm of insurance paperwork and medical bills.

I have slowly edged my way into being more involved in the DSAJ. I went to play group, Mae was the FB "Star of the Week". I had a few "help me!" emails and phone conversations with Karen Prewitt. I'm looking into other things that might build a community bridge for the DSAJ and another place we spend a lot of time. (I don't want to mention it because I hate speaking too soon.) I have committed to the Buddy Walk.

I'm not big on fundraising. I guess I've been around it so much I have a little fatigue in this arena. The reality is that the DSAJ gives our community so much! The individuals and families that the DSAJ supports helps people with Down syndrome become better citizens. The list goes on and on and I encourage all readers to look at their website: I anticipate being a part of this organization as long as I'm alive, and I'm sure Mae will as long as she is alive. How many nonprofit organizations are there from birth through adulthood? I imagine not many.

My goal is simple. I want 10 team mates to walk with us and I want to raise $1,000. Okay, I want to raise 1,000,000 and be the best fundraiser ever, but I'm overly competitive that way and capping it at $1,000. If I can get people to just donate at least $3 to The mAe Team in honor of the three little #21 chromosomes she carries around in each cell, I would be thrilled. The mAe Team button at the top right is how you get to our page and I would love it if you would click through and consider a donation. (You are more that welcome to donate as much as you like and I would even grudgingly accept going over our goal.)

The mAe Team
Hannibal: played by Kate Fryman
B.A. (Bad Attitude): played by Charlotte Fryman
Faceman: played by Molly Fryman
H.M. Murdock: played by Paul Fryman

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