Yo soy La Lay

adventures in family, faith, and Down syndrome

Winding up for the Wind-Down

Be still my heart.  As I stood in the kitchen making dinner, Tessa wandered in, no doubt looking for a snack.

“Momma?  Where Daddy, Lauren, and Ellie?”

It was clear as day, even the word “and.”  The question word “where,” the list of names… It makes everything worth it – every moment at home, being here as a family, adjusting to each other again, hammering through – worth it.

To be honest, there was a small amount of trepidation in the fact that we declined Extended School Year services.  My gut knew she didn’t need it, but with the exception of deciding to marry my husband, there hasn’t ever been a decision in my life that I haven’t over-evaluated.  So with this sweet little question, I feel vindicated.

This summer, we expected some chaos.  Add a new human to the house and there will be madness.  We did not expect the sleep study, or the ER visits for my gallstones, then subsequent hospital stay for the removal of my dead gallbladder, nor the Do-It-ASAP-Tonsil-Removal that so neatly wrapped up our summer of medical madness.

It could be so much worse.  It was enough, and we are tired, and Lord, it could be worse.

The tonsil surgery went well, all things considered.  There were some rough moments coming out of the anesthesia, and we are still struggling to get Tessa to accept her oral meds as easily as she once did.  Still, my own annoyance at watching Frozen and Moana on repeat 18 hours a day since last Thursday afternoon is really the only struggle that has come from the healing process thus far.  I have heard that days 7-10 can be awful, when the scabs fall off, but our ENT told us that she has “small stalks” on which her tonsils were growing, so the recovery shouldn’t be as bad as it could be.

So after all of this, we’re ready for some rest and quiet.  I’m heading to my DSDN Rockin’ Mom Retreat this coming Friday and it could not be coming at a better time.  Last year, I hopped on a plane and flew to Dallas for an amazing weekend connecting with other moms.  This year, the fun is coming to me in Chicago.  I spent a little time this afternoon reading through my blog post from last year about the trip and thinking about how fabulous I felt coming home from a weekend of connecting with these women.  I am so very ready for that feeling again, and feel pretty lucky to have the opportunity to go.  I’m terrified to be home on my own with all three children on my own, so I’m thankful that John is willing to be the first to try it – and I’m sure that after this weekend, I’ll owe him some time away as well. 🙂

I feel like there is so much to do between now and Friday when I leave school and head up to the retreat – packing and organizing, wrapping up loose ends at home so that things can be seamless here, planning in advance at work so that the Monday after the retreat is smooth-sailing… it’s a wind-up in order to wind down, but it is so worth it.  And since we’ve been on full-throttle for some time now, I’m not sure it will feel much different than how life just is for us in this season.  But the relaxation, the conversation, the unrushed breakfast and wine with friends… it’s coming.

Rockin’ Moms Retreat, let’s go!  ❤

 

 

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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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