Gigi's Gala 2018

If you know our family, you know that we love Gigi's Playhouse. Since Ruby was born we've visited the Atlanta location several times each month, if not weekly. We've met friends and therapists there that will always have a special place in our history - in Ruby's life, from John and his therapy dog, Owey, which Ruby saw often for a while before she started school, to Ruby's peer, Norah (and her mom and her siblings), who we still see at least once/month.

As a free facility, fundraising is necessary, and the biggest fundraiser of the year is the Gigi's Gala. It is an all-out, black-tie, fancy schmancy affair that is unlike anything I've ever been to before. I've helped with the photography side of it for two or three years, and last year Ruby got to attend the 'cocktail hour' with Lehr. She LOVED this last year, as she got to hang out with a volunteer and dance and play, with Daddy as close or far as he felt comfortable.

This year they upped the ante on us: I shot it, Ruby and Lehr attended, and they asked me to speak. While the attendees of the Gala have a connection (and some funds to share), they are not typically people I see at Gigi's, so I got the idea that having me speak was a way to share a 'real life' Gigi's family.

While it was a huge honor to be asked, I've never given a speech before, especially not to a more 'civilized' audience. (I give speeches to my kids every day, if I'm honest, but those are more of the rambling kind, if you know what I mean.) I wrote my speech, had someone proof it for 'flow', and then practiced talking through it endlessly in front of Maddux and in my car. For weeks I would dance around the words, trying to find the best phrasing and cadence.

The night of I was scared to death, and my last minute practices in the restroom were not going too well. But when I took the stage it became a bit of muscle memory and I was able to wander through my speech, ad libbing where I needed to and hitting the points I needed to. I only had to look at my notes once (the same spot that always made me pause when I was practicing)! It was an amazing experience, to be asked to move way outside of my comfort zone. I so enjoy connecting with families, new and 'old', and helping newly diagnosed moms when I can. But to speak so broadly and formally was scary, so I was incredibly humbled to be met by numerous attendees (in tuxes and fancy gowns, no less) after I got off stage. They wanted to thank me and shake my hand and compliment my speech and presence. It was surreal.

Lehr and Ruby left almost an hour before I took the stage; we both knew pushing Ruby to 'behave' until 9PM in that overstimulating environment would be pushing our luck. But I reminded him that his presence would have probably made me even more nervous. (A good friend pulled out her phone and caught the speech on video for Lehr, and of course I have my notes.)

Imagine you are invited to the biggest party of the year. For months you search for the perfect dress. You want to find the shoes that make just the right statement, and your jewelry has to be just right. To say you are excited is an understatement. But as you open the door to enter, all noise stops and everyone's eyes are on you. Your excitement changes to panic as you realize that not only are you late, but you are way overdressed.  Every table is at capacity, every seat is taken. And now people are staring - but trying not to stare - as you nervously move around the room, anxiously searching for an available chair. Finally, you see one. You rush over and sit down, breathing a sigh of relief as you hear the party start back up around you. And what's even better, when you look around the table, you find friendly faces offering you a drink and asking about your day.

When my daughter Ruby was born, the new world we found ourselves in was that party, and Gigi's Playhouse was that table.

We did not have a prenatal diagnosis, so when Ruby was born with Down syndrome we were thrown into something we had never prepared for. We had no connection to anything related to Down syndrome, but luckily for us, a close friend found Gigi's Playhouse through a Google search. I still remember the first time Ruby and I visited Gigi's. We attended Therapeutic Thursday, which is a program involving physical therapists and speech therapists and occupational therapists, all working with attendees and their children in whatever capacity needed. But the therapy part is not what I remember most about that morning; it was the instant connection I had with two other moms I met. We talked all morning, exchanging similar diagnosis stories and comparing notes. The next week, I couldn't wait to go back. But instead of those two moms, I met and connected with a few different moms, with different aged kids and different stories. And the following week, the pattern continued.

It's easy to see how I quickly became a Gigi's Playhouse addict. It gave me such an great opportunity to join up with other families, families who were walking the same walk as us and who just got it. Not to mention, every time I attended, there was a volunteer therapist there helping me. This was huge - HUGE - for our family, especially in the early days when we did not have an established community to go to with our questions and concerns.

We celebrated my daughter's fifth birthday yesterday. Five years of Ruby. Five years of Gigi's. In the last five years, Ruby has visited Gigi's pretty much every week of her life, even through an eight month season of leukemia. And why? Because she has therapists and tutors and volunteers...  and friends. She has more friends through Gigi's than either of her siblings ever had. And those older siblings have been to Gigi's Playhouse dozens of times to participate in programs with her. They know Gigi's kids by name, and they have seen the great worth of our Down syndrome community. And me? I have a tribe, A HUGE tribe, that wouldn't be nearly the size it is without Gigi's Playhouse as it's backbone. This community is so important to me, so vital to my daily success as Ruby's mom that I even got a matching tattoo with a bunch of them earlier this year.

My family is forever grateful to all of you for supporting the efforts at Gigi's Playhouse, for seeing the potential of our kids, and for giving us a seat at the table.