Update on Nichole's Surgery

This morning, we arrived at 6:15 am at Children's Hospital for Nichole's tonsillectomy, adenoidectomy, and possible ear tubes. It was an early morning, but Nichole was happy as we got out of the car. I kept thinking, she has no idea what is about to happen!

We talked about the surgery with Nichole. We do think she understood it to some extent, and she was mildly cooperative in the morning. That is, until they had her take her pajamas off and put on the hospital gown. I can't figure out how to paste video from my phone here, so check out this linkhttps://www.facebook.com/photo.php?v=10151797109752802 on my Facebook page. It was pretty cute, and you get a pretty good sense of Nichole's communication skills.

Nichole gets pretty worked up with doctors and getting her vitals checked. At first, we thought she would loose it, but she pulled it together.

Here she is, resigned to wear her scrubs and right before surgery.

She is a daddy's little girls, and was happy having daddy with her. Although she did not like daddy getting scrubs on either.

 

 

And here they go, ready for surgery and Nichole is waving good-bye. At this point, she really had no idea that when she saw me again, she would be in pain.

 

They called us to recovery, and Nichole was already sitting on the bed. Wobbly from anesthesia, a wonderful nurse helping her. She was whimpering, mainly when she saw she had an IV. She knew there was something different in her mouth, but when I asked if it hurt she said no, and pointed at the IV to come out.

 

 We hung out at the recovery room for a while. Nichole settled down and was watching Strawberry Shortcake, and later on Curious George. The beauty of technology! They told us that technology works better helping kids with pain and anxiety even compared to drugs. I will have to agree.

After a while, they took us to our room and Nichole nestled with daddy.

 And then when the nurse said she could put her Frog jammies back on, she was one happy girl!

We are waiting. The plan is for us to spend the night. It is a precaution that most hospitals take with kids who have Down syndrome or other special needs to make sure that they are okay going home with oxygen levels, or any complications that might arise.

When Nina had her surgery, due to her oxygen levels we ended up staying there for 2 nights.

How is Nichole doing? So much better than we expected! She is drinking, without us pushing it, she wants to. And eating? She ate an entire plate of noodles, and she was asking for more food as Andy and I were eating.

She is amazing!

The main thing right now, is handling her pain. Which so far we have kept on top of it.

What a trooper we have!

Thank you so much for all of you praying for my sweet girl. We appreciate those prayers more than you know!

Becoming Whole: A Sibling's Story

Editor's Note: This is a guest post from Caroline McGraw, featuring an excerpt from her book, Love's Subversive Stance: Ground Yourself and Grow in Relationship.

When I was a little girl, I don’t remember having a firm concept of God, specifically. Yet I do remember having a very clear idea of what heaven would be like. I believed that heaven would be just this: a place where I could talk freely with my brother Willie.

It would be a place without the limits of autism on his part or lack of knowledge on mine, a place where I could ask him a question and receive a complete answer. I remember wanting to ask him about the details of our life; I wanted to know if Cheerios were really his favorite cereal or if he ate them simply because that’s what Mom bought. I wanted then what I want now: a window into his mind and heart.

Yet maybe, just maybe, I can only see in part because to see fully would be too much beauty to bear.

 

For me, heeding this wisdom means that, even as I hope for heaven, I look for those sudden windows into my brother’s mind and heart now.

I remember a time one such ‘window’ opened: during the long-ago era when my brother was obsessed with Snow White and the Seven Dwarves. He had (still has) all seven stuffed dwarves, and he loved to line them up. He referred to himself as ‘Grumpy’ or ‘Happy’ depending on his mood. I realize now that the film was probably an excellent way for him to learn about identifying emotion, since each dwarf is typecast and consistent in facial expression throughout the story.

One day, my parents asked him, “Willie, if you’re Happy, who is Mommy?” For reasons inexplicable, Willie replied, “Mommy is Bashful!” Mommy is not bashful. However, Bashful is a thoughtful, kind dwarf, so perhaps these qualities were behind his choice.

My mom then asked, “And who is Daddy?” Willie said, “Daddy is Doc!” This choice seems a bit more logical. My father wears glasses and has a calm, direct way of expressing himself. He has a quirky sense of humor, and he’s a natural leader.

Finally, my mom asked, “And who is your sister Caroline?” With no hesitation, Willie said, “Caroline is Snow White!”

So there you have it. To my brother, I am a Disney princess. He may not be able to say things like, “Caroline, I look up to you,” or, “Caroline, I’m glad you’re my sister,” but he can cast me in a starring role in the movie of his mind.

I may not be able to see all I’d like to see of my brother’s mind and heart, but what I can see is astonishing. He’s creative, and hilarious, and generous with his casting. 

***

Caroline McGraw is a would-be childhood paleontologist who digs for treasure in people with disabilities, and empowers caregivers to do the same. Her free digital book, Your Creed of Care:  How to Dig for Treasure in People (Without Getting Buried Alive) is available at A Wish Come Clear.