Yo soy La Lay

adventures in family, faith, and Down syndrome

Ready to write 

The only way that I can really describe our last two weeks is that we are careening wildly into October.  Think big minivan speeding around the corner, precariously tipped on the two side wheels, while the driver wills the giant piece of machinery to correct itself before it tips.

Yup.

One sick parent, one messy house, two worn out kids, work chaos, meeting chaos, life chaos.  Someone send over some chocolate.  And wine.  Or maybe it’s more time to break out the tequila!!

But what else is new?

Saturday begins Down Syndrome Awareness Month.  While the rest of the world goes pink for Breast Cancer, we’ll sport our blue and yellow instead.  If you’ve been around for a little while, you know that in October, I participate in the 31 for 21 Blog Challenge.  For the past two years, I wrote a post every day in October.  This year, I’m taking part again.

In year one, we wrote about 31 things that we learned since we had Tessa.  In year two, it was 31 ways to advocate.  For year three, I’ll be writing 31 open letters to people who have somehow impacted our life since December of 2013.  I’ve been inspired by the Down Syndrome Diagnosis Network’s #deardoctor campaign, in which parents are sharing letters that they have written to the individuals who delivered the initial diagnosis of Down syndrome.  I’ll be posting one of those as well, along with 30 other letters throughout the month.

I am going to miss someone.  I know I will, it’s inevitable and I apologize in advance, whoever you are.  Honestly, with this focus, forgetting someone is my biggest fear because I don’t want to hurt any feelings.  But this is where my heart is calling me this month.  I hope you’ll join us.

Who’s ready for October??

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Retreating

I told you, I had the most amazing weekend at the DSDN Rockin’ Mom Retreat.  It’s Tuesday and I’m home surrounded by the same old stressors, but I’m still riding the wave.  I feel lighter (trust me, I’m not); my mood has lifted.

Many at home have asked about my trip.  I want to tell them – but a small part of me panics just a little at the question.  It’s like that time was somehow sacred, like sharing our experience is somehow like telling a secret or sharing what happened in Vegas…  It’s nothing confidential, but my heart wonders if the magnitude of these connections is in any way relatable  to those who are asking.  

Two years ago, when I joined a DSDN Rockin’ Mom group, I ‘met’ a small group of moms with children around Tessa’s age. Meeting them in person is not something I thought, at the time, would ever happen. On Friday evening, as I made my way down to the conference room, I was a bundle of nerves. I wondered how I would insert myself into this gathering; after all, only two others from my original group would be present. But then one mom took me under her wing and helped me find a table… and a margarita. The moms at the table chattered away with me like we had known each other forever.  Not long afterward, I got to hug Brooke, whose son is Tessa’s long-lost partner-in-crime. They haven’t ever met, but I swear that they are yin and yang.  So too are Brooke and I actually.  It was so, so great to give her a real hug instead of a virtual one!!

We had the opportunity to listen to some phenomenal speakers who have paved the way for our own children to be included in their schools.  Sandra McElwee came from California to talk about Sean, then left so that she could attend the Emmy’s with him for Born This Way (which, if you haven’t heard, WON).  I will readily admit that I was too shy to say a word to her.  Yes, I was shy.  Her story was awesome.  We got to hear from Laura Buckner about creating a pathway for school inclusion – I furiously scribbled notes (pages of notes) while I listened to her, soaking in every tidbit that I could so that I could prepare for our own race.  And during our breakout sessions, I sat with a small group of writing mommas and Mardra Sikora, who is a published writer… and so is her son, Marcus, who has Down syndrome.  My take-aways from Mardra were to write often, to write with a purpose, and to write my own story, not that which I think others want to hear. There was more… so much more, from each of these ladies and others.

At meal times and in the evening, we bonded over wine and stories of our families and lives. There were no filters, no apologies, no need to explain the nuances of life in our homes.  We processed through the words of the speakers, grappling with choices about schooling, and therapy, and holding our children accountable.  We listened to each other talk about the struggles that we are facing with services or schools, but also shared in the great joys and successes of our kiddos.

On Saturday we went to a Biker Bar (which was supposedly not a biker bar… Yeah, right) and that’s all that needs to be said about that.  Sorry to the poor teenager who decided to venture out in a unicorn costume… I guarantee that she had no idea what was coming when she made that wardrobe choice!  

(I can also pretty much guarantee that her dad will never let her in public dressed like that again for fear of another swarm of unexplainably-overexcited moms mobbing his daughter.)

My alarm went off too early on Sunday and it was off to the airport.  Sitting with my book and hot coffee, I was approached by a woman who told me that she had written some of the Chicken Soup books.  She asked me about my a World Down Syndrome Day shirt and my daughter.  She said she normally sells skin care products, but not to me because I was glowing… and asked for my blog because she said she thought my story was a good one and that I seem grounded.  I share this because “glowing” and “grounded” are not words that I would have used to describe myself anytime in the past 12 months… But two nights in Dallas with 120 Rockin’ Moms will do that to you.

We are the lucky few.

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Home again, home again.

I’m soaking in the last few minutes of solitude.  Through a series of events, it happened that I ended up checked in for my flight and at the gate about three hours early.  And it’s good.  Good people watching, good decompressing, good reflection.

It was such a great weekend.  I’m tired and ready to come home to my loves, but wow.  This trip was exactly what I needed.

Texas is big and flat and though I barely saw anything while I was here, it’s now officially on my list of places that I actually do want to visit.  I don’t think I met an unkind person while I was here.  I didn’t venture off the hotel property much, but enough to feel welcome and loved on by all the Texans I met.

I didn’t come to this retreat with any burning questions, but I have left with answers to questions I didn’t even know I had.

It’s amazing how quickly the awkward “I know you online but who are you?” faded into easy conversation with what felt like old friends.  Wine helped with that, but so did the feeling that these women, they are my people, my tribe.  There were laughs and wows! and ‘hey, I totally get you’ moments… Kleenex boxes at the tables wiped away good, cleansing tears and we just enjoyed each other for 48 hours.  

I’m excited to come home.  I’m tired, but refreshed.  I’m reflective, but forward-thinking.  I’m ready to put my nose to the ground and do the work.

So, so good.


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Leaving on a jet plane

Texas was never on my short list of “Places I would like to travel,” at least until about 6 months ago.  Too hot, too big, too Red, too many steak houses where they give you a prize for eating a whole cow.

But then the Down Syndrome Diagnosis Network announced that the 2016 conference would be in Dallas.  And I missed the last one and sure as heck wasn’t going to do that again.  So Texas, yay!

(Hopefully they don’t check my voter registration card at the gate… Or they might not let me in!)

I’m going to spend the next 48 hours or so with 120 strangers, sort of.  Actually they are friends.  Stranger friends.  Online stranger friends.

Is the this 21st Century or what??

So I’m sitting an airport, sipping a hot coffee and eating the best muffin I have ever eaten.  I’m so excited.  And I miss my little family.  I’m amazed at the whole world that has opened up through because of a wee little choromosome.  I’m so thankful for this chance to refresh and recharge.

So very thankful.

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