Yo soy La Lay

adventures in family, faith, and Down syndrome

It’s time to celebrate

365 days ago, this was my family.  It’s the last picture Before.

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We were celebrating my graduation with a Master’s degree.  We were celebrating an ease in the workload that we had put on ourselves.  We were celebrating a little break to prepare for our newest addition.

We did not know the surprise that was in store for our family just 4 days later.

Surprise from a baby who would arrive long before the crib was ready or the clothes were upacked into drawers.

Surprise from a baby girl that I was sure in my heart would be a boy.

Surprise from a baby girl that arrived after just 8 short hours and two quick pushes.

Surprise from a baby girl with one tiny extra chromosome that would turn our whole world upside down.

Shock. Hope. Fear. Joy. Pain. Excitement. Guilt. Devotion. Frustration. Reassurance. Confusion. LOVE.

This week is a celebration of our little girl Tessa.  We feel like we might have missed the party the first time around, so this year, we promise not to mess it up.  Through a series of posts this week, we celebrate her first birthday with reflections on the day from the perspective of others who were there.  My side of the story can be found here and here.  I hope you enjoy hearing what everyone else has to say for a change. 🙂



Miss Cranky Pants

Three times I’ve written this and three times, it has been deleted.

Ladies and gentlemen, I am 100% stuck in a rut.  Miss Cranky Pants?  Oh yeah, that’s me.

My hope is that just throwing this out there will somehow help me to snap out of it. I have been told many times that my feelings about developmental delays will ebb and flow… It’s so true. I don’t know if this crabby phase is an “ebb” or a “flow”, but it’s where I am right now.

This all began (kind of) with the planning of Tessa’s first birthday party, which is in a month. I’m thinking a lot about the milestones that are commonly associated with the first year – walking, using a cup, eating table food, first words – and thinking about how hard she is working and how far away these milestones seem to be. She will do them all in her own time. Today, I just wish that one thing would be easy for her. Just one.

I think a lot of this was magnified by the Thanksgiving holiday and time to catch up with family and friends. I found myself talking a lot about what we are working on in therapy and how she is doing. I have an idea in my brain that people have expectations for what an almost-one-year-old should be like. And somehow, I have convinced myself that if people see her and she isn’t that way, the way they are expecting, then they will feel bad for us. Pity is the absolute last thing I want.

She’s so little! Someday, she’ll have her own personality and talents. They are already locked in her little brain somewhere. Because of Down syndrome, the puzzle is a little trickier to figure out, but her strengths will emerge. Rather than frustration, what I really want to feel is cheers for how hard she has worked and how far she has come. She’s army-crawling. She’s holding her own bottle. She’s mostly sitting. She’s babbling like crazy. It’s progress.

In all of this, I would change nothing. Just as I would not change any of the aspects of myself that I struggle with, neither would I in her. All of this serves a purpose. All of the ebbs and flows and smiles and tears and everything else that comes along with an extra chromosome is part of her role in this crazy world. She and all of us are better for it.

There. I’ve said it. I’m in a funk. But I’m feeling better already.

A little cuteness, perhaps? Just one picture today. It’s Tessa, in a restaurant high chair for the first time, while out on a special date with Mommy and Daddy all by herself. Just try not to smile when you see this face…