Last weekend, I headed north to speak at the Syracuse Gigi’s Playhouse Gala. As I expected, “speaking engagement” quickly transformed to soul experience, and I put another pin on the map of places I’ve been that have changed my heart.
There was snow for a little boy who had never seen it (he only liked looking at it from the inside)…
…and the warmest welcome from two friends I made last year at the I Heart Faces Conference. Two years ago, Heather Rodriguez listened to a little voice in her heart that said she could make things happen in the Down syndrome community even though she has no family members with Down syndrome. She got involved with Syracuse Gigi’s Playhouse, started taking photos for them, made lasting friendships with many of the families there and joined their board this year. I loved watching her at Gigi’s. She hugs and high fives and treats everyone around her the same. And her friends with Down syndrome know it. They know she doesn’t water down her hilarious slightly inappropriate jokes for them, and they love her for it.
Jennifer Tonetti-Spellman (dude, her photography!) drove 4.5 hours from the city for a cozy sleepover that served as the perfect prequel to Friday and Saturday night’s festivities.
photo courtesy of Jennifer Tonetti-Spellman
Gigi’s Playhouse is a series of Down syndrome achievement centers that serve both children and adults and provide educational and therapeutic programs at no charge to families. There are currently 17 Gigi’s Playhouse facilities–16 in the United States and an International Center in Mexico.
I walked into the pre-gala party at Gigi’s in Syracuse Friday night and was immediately overwhelmed by the support and community present. So many families showed up, both those who had a loved one with Down syndrome and those who volunteer and bring their children to build an inclusive community. And Kayla, the assistant site coordinator who has a part time paid position at Gigi’s, blew me away with her professionalism and pride in her job. She gave me a tour, brought me a water, showed me where I could hang my coat, watched Dash while I took pictures and quickly jumped in when I asked permission to post a photo: “Oh, they all signed media photo release forms. You’re fine.” She casually mentioned that she has Down syndrome and that she also has her driver’s permit, and though that fact shouldn’t be a big deal, it is to me. I’m only four years into this. “You’re very inspiring, Kayla,” I told her. “Thank you. I can’t wait until you meet my mom and dad,” she answered.
This place is building such a supportive community, and the energy that filled those walls Friday night could have illuminated a small country. I watched while parents hugged each other and made themselves at home while kids ran to play in their safe place with both familiar and new friends. I saw Mila jump into the ball pit, watched a buddy help Quinn climb the rock wall and smiled when Ava tucked some dolls in her shirt to nurse her babies just like Nella does. I hugged Carrie who felt like an old friend, and when we realized we share a mutual friend at the NDSS, we took a selfie and texted it to her. “I wish I was there,” my friend texted back. I listened as Gigi’s enthusiasts told me about all the programs they are running–the tutoring, the yoga, the literacy, the sign language, the dance. It’s their very own Field of Dreams. If you build it, they will come.
And the Gigi’s Playhouse Gala?
Where there is dancing, there is love.
The love was big. You don’t forget nights like that. Dance moves like that. Hugs like that.
(gala photos, courtesy of Heather Rodriguez)
And a little part of what I shared, something I’ve been meaning to write. A letter to my old self.
Dear Old Me,
You’re scared, aren’t you? I get it, and it’s okay. I know you love her, and you didn’t expect that upon kissing those cheeks for the first time, you’d also have to carry the weight that she’s going to have a lifetime of challenges. I know you want to take them all away from her, but you can’t. This isn’t exactly what you had planned, but sooner or later you’re going to realize that you can’t plan everything, and those unexpected things in life often turn out to be the best things that ever happened.
Forget about what you think you know about Down syndrome and start thinking about what you want to know about Down syndrome. The future that you hope she has. Never lose sight of that. In fact, find other people who have that same future in mind. Join forces with them. Make it happen.
I know you want to run home and shut the doors right now–close yourself off with that baby and pretend the rest of the world doesn’t exist. Take your time. But know that the world needs you and your voice, and the world needs Nella and her friends. You’re not alone. You’re going to meet people soon who will amaze you–people who are building roads where roads have never been. Learn from them. Help them.
And see that ceiling above you? Kick it out. She’ll never fly above it if you don’t.
You’re going to be fine. Nella is going to be fine. And no, it won’t always be easy. But what’s really easy in life? Certainly not the most beautiful things.
To everyone who is part of this community and a part of this incredible story we all are telling (that means you and you and you)–what a privilege it is to do this with you, to learn from all of you, to be inspired by your drive and your ideas and the way you are loving people and knocking out that ceiling.
And sometimes, a good church “Amen” is how it needs to end.
Amen, amen.
Thank you, Syracuse, for inspiring me. You’ve built something amazing.
*******
Congratulations to the Great American Cookies $50 gift card winner, (generated by random.org) Comment #17: The House Wife Rookie: “Pink and her rendition of the timeless “somewhere over the rainbow” truly moved me to tears. A very special moment, indeed.”
Please e-mail your contact info with “Giveaway winner” in the subject line to kellehamptonblog@comcast.net. Thank you!
That place looks like so much fun I’m surprised the walls could contain it. You rock as always.
Love this! Was about to reply to a new mama on the Down syndrome pregnancy board. I think you just write my reply for me, I’m just gonna share this.
I loved this article. I teach in high school in Hoffman estates, il. Many of my students attend events at the original Gigi’s! There is a new facility with a gift shop and coffee/hot cocoa cafe. Gigi’s is amazing!
I loved this article. I teach in high school in Hoffman estates, il. Many of my students attend events at the original Gigi’s! There is a new facility with a gift shop and coffee/hot cocoa cafe. Gigi’s is amazing!
tears, just tears. beautiful post, Kelle.
Great gala. i love the lady in blue, she got the moves
Nice post, sounds like a lovely trip!
Curious why you didn’t bring Nella to a Down syndrome event? Why choose to bring Dash?
Looks like an awesome event full of fun and love! Did Nella enjoy herself? Any plans to open a Gigi’s in your neck of the woods? It seems like a wonderful, all inclusive place for Nella and her friends.
We miss you already Kelle.Thank you for sharing your wisdom, your words, your regrets. There wasn’t a dry eye in the house on Saturday. I love the letter to your old self. It actually helped to start the healing process in my old self.
You have a very good friend in Heather. I glad you have someone like her in your life! Gigi’s Playhouse sounds like a wonderful organization. I am so glad they make a difference in this big and beautiful world!
Beautiful letter Kelle x
Thank you Kelle for sharing your letter. I am sure you gave a voice to something many people have been afraid to share or admit.
There is a Gigi’s Playhouse in Moline, IL, near where my BFF lives. She belongs to a therapy dog group and at Halloween the group was invited to come spend some time at the Halloween party that Gigi’s was having. I got to come along and it was so cool!! All the littles just loved the dogs, and they, them. What a wonderful organization Gigi’s is!
That first photo of Dash is just gorgeous! Did Nella go too?
Started bawling at dear old self!
Oh how sweet. I love that picture of the couple on the dance floor. They look sooo happy. I love events like this.
What an amazing place!
Kayla is a beautiful young lady!
This post made me tear up. I’m only 6 1/2 months into this adventure and I found myself nodding along to your letter. Beautiful!
I am a rehabilitation counselor (meaning that I specialize in helping people with disabilities live and work independently). I run the adult program at the Gigi’s Playhouse in Chicago, and it is honestly the best part of my week. Although I started this group 18 months ago, my family temporarily moved to Michigan. Throughout the past ten months, I have commuted 4 hours each way to lead this group. Yeah. That’s 8 hours in the car… for a 90 minute volunteer gig. And you know what, it’s worth it, because Gigi’s is just that good. No one gives a shit about chromosomes. It’s friends coming together [period]. I am so lucky that I have the opportunity to be a part of such an incredible organization.
AMEN! I think many others feel like I do – we’ve come to love Nella (and the rest of your family!) and grow and learn about DS with you as Nella grows into such an amazing little girl! Thank you! XO
Kelle, I have heard you speak twice and you have brought me to tears both times, you are very inspirational, you are so eloquent. I really enjoyed meeting you.
Patti McKeon better known as “Kayla’s Mom”
Tears here. My little lad has a lass called Ginger in his class at school this year – all this and more I wish for her and her family. She is rocking that extra chromozone.
I love Dash’s new girlfriend, Kayla. She is something else. Beautiful in that blue dress. I can just tell she is isn’t going to let DS keep her from anything she wants to accomplish.
Your letter was really wonderful. My experience is backward compared to yours. We thought the little boy we were adopting just had emotional difficulties. It didn’t matter we loved him. He needed emergency care and never left once he got in our home. So I do understand . I’d love to volunteer in a place like this. I’ll have to see if there is one in our area.
Smiling. Enough said.
Patti mc, you have a beautiful daughter. Kelle, beautiful post.
Beautiful post. Got to spend some time at GiGi’s in Atlanta. Amazing place! Would love to be involved in something like it is southwest fl!
We were celebrating with you! Only in another state!! So glad that you were able to be part of such an amazing night!!!
Oh Kelle, I feel so lucky to be part of this amazing community here at ETST. You have such a special gift and I am so thankful you are sharing it with others.
“Dear Old Self, get to enjoyingthesmallthings.com asap. It will all make sense and you can thank me later.
Wendy”
Thank you Kelle for another beautiful post, so looking forward to meeting you next month!
It was such an honor to have you here, Kelle! Thank you for coming all this way and sharing your heart with us. So very blessed to be a part of this community.
It was such an honor to have you here, Kelle! Thank you for coming all this way and sharing your heart with us. So very blessed to be a part of this community.
I live just outside of Syracuse- how did you like the snow? It just keeps coming!!
I love the pictures from the gala- it looks like it was so fun! Such a great organization!
Emma
emmabauso.com
Love, love this. Every bit of it. Kelle, I love your truthful, raw words that you describe yours and Nella’s journey with. It’s truly inspiring. I tried writing a little about my experience with down syndrome friends, but I doubt I give it justice. So, I just wanted to stop by and tell you how much awareness and encouragement you give and how much it matters! 😉
Hey y’alls, if any of you wanted to share your thoughts on this, especially Kelly!, I would pretty much be stoked.
http://amycarmichaelyoo.blogspot.com/2014/03/stand-taller-shine-brighter.html
I love this. . . thank you.
My daughter, Clara, has Cohen Syndrome. She is 22 months now. I love the letter to your old self. . . I feel so many of these same things/emotions/etc in terms of having a special needs child. Thank you for always being vulnerable and sharing. And inspiring. 🙂
What a beautiful group and event!! Thank you for sharing and continuing to inspire. Your letter brought tears to my eyes as I remembered back to those early days of yours. Beautiful as usual Kelle.
Anxiously awaiting the Gigi’s Playhouse in Indianapolis. Although I have no direct connection to the DS community, I am ready to get involved! I would say, mostly due to your inspiration!
Did you just call me slightly inappropriate? You know I am full on 😉 Thank you again for braving the cold, plane rides with a baby, my lived in (aka messy)house and all that goes into an event like this. You added to our magic in a beautiful way. You have friends here, ones that are newer in the journey and ones who have traveled the road longer.
I clicked over to Heather Rodriguez’s blog via your link. Wow! Heather, you are an amazing person. I’m in awe of your giving spirit. You must be an amazing mom, your kids are lucky to have such a positive, proactive mother. God bless! Overall, a great post at ETST! Thanks!
Love the girl in purple rocking the bow tie.
Kelle- you inspire us everyday! Thanks for being such a fierce advocate and for showing us all the amazing things our future will hold! My little man Porter and I thank you!
Kelle….
“There was snow for a little boy who had never seen it (he only liked looking at it from the inside)…”. Sweet!! 😉
“She casually mentioned that she has Down syndrome and that she also has her driver’s permit, and though that fact shouldn’t be a big deal, it is to me. I’m only four years into this.”. I think…. That the very fact that Kayla, who has Down syndrome, also obtained her driver’s permit should be a big deal!! She most certainly is an inspiration!! ;-D
Funny!! I just quoted from “Field of Dreams”–while playing Wii with my Down syndrome brother!!–yesterday!! Great minds think alike? 😉
I love your closing letter!! You have truly come a LONG way in your Down syndrome journey!! ;-D
–Raelyn
Awww I’m sure Nella would have loved being a part of that gala. I’m surprised you brought Dash instead of her.
Love this! Your letter to ‘old me’ is something I think about daily. Your written word is inspiring, and often speaks to my emotions directly! From a mama who continues to ‘ kick the ceiling down’ so my little bird can fly, sending much love from Canada. Xoxoxoxox
Absolutely love this:
And see that ceiling above you? Kick it out. She’ll never fly above it if you don’t.
Mark McKeon via Patricia McKeon
Options for this story
I was very lucky last weekend to meet this inspiring woman. Thanks Kelle for coming to Syracuse and sharing your story..
Thanks so much for that letter to yourself. Sub out Nella’s name for my twins’ names, and Down syndrome for Cerebral Palsy, and I could have (wish I would have!) written that letter myself.
Looks like a great party!
Hi,
I love your words– I read faithfully but only comment every once in a while. I won a swim suit through your website last summer (I’m very much enjoying!) 🙂
This sounds like such an awesome event! As someone with a disability myself (spina bifid a), I sometimes find these kinds of organizations and get togethers challenging. I am always trying to navigate allowing for people to bond and draw energy from each other while still letting them “be themselves”. As a teacher I want to teach my college kids that telling single stories people, even if its well intentioned, can be extremely destructive. Sometimes we want to reduce someone to the things they have overcome rather than trying to see that they are “a great many things”, as you often write on this blog! I don’t know if these are things that you ponder too but here is a blog post I read recently that I thought was honest and thought provoking, and tries to build some bridges:
http://www.lovethatmax.com/2014/02/the-paradox-of-special-needs.html
I try to keep these things in mind when I meet parents of children who have a disability. Anyway, just some half baked musings from me– take it for what it is!
Blessings to you and yours,
Lisa
Can you please explain to your readers why you chose not to bring Nella?
Omg I’ve been reading your blog since Nella was born and you were in my hometown of syracuse ny last week! Amazing!!!! So glad you were here!
Danielle
Ps. Hope you enjoyed the below freezing temps and the snow! 😉
In regards to not bringing Nella: There are numerous boring personal family/travel logistics for any family’s trips that shouldn’t need to be explained and won’t be here. We treat our children equally, and the purpose and meaning behind this event makes anyone and everyone a likely candidate to attend. I wish my entire family could have been there–it’s an important event for all, if not especially for someone who does not have Down syndrome. I look forward to the many opportunities each of my children have in the future to be part of such a meaningful event.
@LisaMarie–Yes! Just went and read that post, and it’s very thought-provoking and well-written. Some good food for my brain that I’ll be thinking about –thank you for sharing. And you’re right–it’s part of the “great many things” that makes everyone who they are. Had a similar conversation today with a mom of a teenager with autism. Discussing the balance of too much “wow, your kid is so amazing, how inspiring!” when we just want people to see our kid as normal…and yet recognizing that there is a valid inspiration element there too (especially when you talk to some of these adults who love being recognized for being an inspiration and really do have some incredible back-up in what they’ve overcome). I think it also depends on where in the journey of special needs one stands. I know personally, in the first year of raising Nella, I looked differently at some of those stories–I needed to hear them. The more I grow and meet adults with special needs and hear their stories, the more I sort out these things. Hope that makes sense. These are such great discussions to have though–they sharpen our thinking and challenge our advocacy efforts.
how can we get a Gigi’s playhouse in Naples? that would be awesome!!!!!!!
What a great idea! where families can come together and share support in a comforting environment.
Wow, GOMI people, you guys do realize Kelle can see your IP address and can also see where you’re surfing in from? Perhaps that’s why her comment seems hostile, it’s really obvious y’all aren’t coming from a place of actual concern, you’re just in it for the snark. You guys pretty much follow a formula, and the sheep mentality is just as sad as the “crazy fangirls” you make fun of. Don’t you have your own space where you can say whatever you want without bothering Kelle here? I also believe it’s against your site’s rules that PartyPants put in place.
Kelle, you can even see some of them talking about how they left you a comment here along with a compliment (so that they look like fans) in the hopes that you’d answer their snarky questions. You should probably ignore them whenever you see stuff like that, they will never, EVER be satisfied with your answer.
And this is the comment, which clearly violates their site rules by stinkerpotpie:
“Uh no, I’m not a fan. And my name is on there lol. I just tried to ask nicely because I didn’t want to be blocked and I figured if I was nice she would respond. And of course she didn’t.”
Kim – why would you direct more traffic to GOMI? Your comment is counter-productive. C’mon now…
I’ve been reading this blog for a little over two yeas now, and whether previous commenters come from GOMI or not, Kelle’s answers to the questions posed by her readers seem to take more and more of a shitty tone. Is asking why Nella wasn’t incorporated into this trip to the gala really that horrible of a question to ask? As a continuous reader, I wonder why I never see Nella around other children who do not has DS. I don’t expect Kelle to be the end all be all advocate for DS, but with such a broad reaching blog which only took off after Nella’s surprise birth/diagnosis of DS, there is not one post where she is directly involved with peers “just like her”. So yeah – the blog post on the gala would’ve been exponentially more relevant if Nella actually made this trip instead of Dash. And in the blog business side, isn’t that the point? This is how Kelle makes money to support her family – by writing about these very events and life happenings.
Long story long…you’re not doing Kelle any favors, Kim. We can be “fangirls”, and we can also ask intelligent questions. The real question is will we get answers that don’t belittle the very readers that help support not only the DS community at large, but Kelle’s livelyhood?
((((And see that ceiling above you? Kick it out. She’ll never fly above it if you don’t.))) SO MUCH
and i mean, so much as in so much for so many things.
xo
Have you seen this video
https://www.youtube.com/watch?v=Ju-q4OnBtNU
Sooo very sweet! May you continue to have lots of strength, love, patience and wisdom for all that lies ahead!!
You are an inspiration, your words always resonate with me, you are very real with your emotions I am inspired by you as a mother that when my days are feeling dreary, or I am tired from being up with a sick child often apart from honesty with other mums about my feelings the things that are most beautiful are often right in front of me should I care to take a moment to notice, thank you for writing such a wonderful blog, kindest wishes Maria