Finally, a good hearing check up

Lydia is prone to problems along the mid-line of her body, that's part of 22q11.

Lydia is prone to ear problems and has tubes to battle that.

Lydia gets her hearing checked at least twice a year.

Lydia typically has a partially blocked or clogged tube at our hearing checks.

This time it was all clear and she had a perfect test!

And then she had about 2 tiny bites of eggs at breakfast.

I'll tell you about feeding therapy in another post, when I have more energy.

The Nativity Play...Now Playing

Lydia R. Riggs

Now starring as...

Mary, the Mother of Jesus!

Two Generations of actresses portraying Mary.

More fun around the holidays.

This little reindeer likes to prepare her own water and food boluses for her g-tube feeding.

Lydia went shopping and wrapped up a present for me all by herself.  She also found my tap dance costumes and enjoys the red and white better than the red and black one.  

Lydia is a great Chex Mix scooper upper and putter in canner.

Christmas Time is Here!

Do you want to build a snowman?  After Lydia goes to bed?  Sure!

Decorations are up!

The snow is snowing, the wind is blowing, but I will weather the storm! 

2018 Riggs Gingerbread House 

So you better watch out, you'd better not cry,
You'd better not pout, I'm telling you why!
Santa Claus is coming to town! 

Wrapping Done, almost! 

Cookie Day 2018 with Kinsley, Lydia and Grandma.  

The tradition continues, but this year is being done in two parts. 

Part One. 

2018 Miceli Cookie Exchange Pajama Party - 8th Year. 

Trauma Survivors, Riggs Party of 3

It wasn't until last week at Lydia's first feeding therapy appointment that anyone told me that we are trauma survivors. We are. I never thought about it. No one every asked me if I was doing okay. The focus is only on Lydia. Now as things are beginning to "normalize" a little bit I realize what we've been through in just 3.5 short years. We fought. She fought. We survived and we are changed.

After reading this article I realize where it shows in me. It shows when I am at the point of breaking down because I can't put anymore on my shoulders but I have to. It shows when our nursing agency asks me to contact senators to advocate for care. It shows when I'm asked to do anything extra because we're some sort of model household that will make "the system" look good. I respond with anger and spite because I don't understand why these people don't realize what I already have on my plate.

The medical professionals saving Lydia's life didn't get it. Some were better than others, but few of them lived through these things as a parent. They were empathetic and listened, would put a hand on your shoulder, but 9 times out of 10 their child didn't have open heart surgery, their child didn't eat through a tube, their child never had a trach. I get bitter and angry writing this, but somehow I believe it needs to be said.

We still face uncertainly with Lydia. Every year when it's time for a heart echo and ekg. Every year when it's time for the Neurological & Behavioral evaluation that could someday tell me she has beginning signs of schizophrenia. Shit.

From a post on July 29, 2015:

“Laughter and tears are both responses to frustration and exhaustion. I myself prefer to laugh, since there is less cleaning do to do afterward.”  -Kurt Vonnegut

“To conquer frustration, one must remain intensely focused on the outcome, not the obstacles.” -T.F. Hodge

“And I got out of there without punching anyone, kicking anyone, or breaking down in tears. Some days the small victories are all you achieve.”  -Molly Ringle

Sunday Funday in the Snow!

Luckily Mom picked up a new $5 fishing game the night before. 

We played it at least a dozen times on Sunday. 

 

We watched it snow. We watched Netflix.  We watched Disney.

We took a bubble bath.  We read books.  We made lunch.

We decorated.  We folded laundry.  We slept. 

So mommy and daddy played in the snow after bedtime.  

We scraped and shoveled and salted.

   

And then Mommy asked Daddy, "do you want to build a snowman?"

Rose bush arms.  Coal buttons.  

Brussel sprout nose.  Cranberry eyes.  

New York Yankees stocking cap.