Wednesday, June 7, 2017

Elisabeth's Literary Journey

Forever it was Goodnight Moon. 
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I've recited it to Elisabeth at bedtime, during medical procedures, at school, in the car, you name it.

In the great green room there was a telephone and a red balloon...

I'm confident that Elisabeth, though non-verbal, knows every word to Goodnight Moon. And that's a good thing, for in those words there is familiarity and comfort and rhythm.

But this Spring I had a thought...that perhaps Elisabeth would like to hear a new story.

To some it might seem silly to read a book to a child that doesn't have much comprehension. But it's not about the story exactly. It's about the emotion and the excitement that comes with reading aloud. You see, telling a story is much different than every day conversation. When you tell a story your voice changes; the tone expresses feelings like surprise, suspense, sorrow, and joy. I knew that if I began reading books to Elisabeth she would find happiness in it; that she would know the words were for her and experience the story in her own way.

The first book I chose was The Lion, the Witch and the Wardrobe by C.S. Lewis. We poked our way through, reading a few pages here and a few pages there. And I noticed something: when I read to her I could see a look of focus in her eyes. Eventually, we made it all the way through the wardrobe door and back, experiencing the wonders of Narnia together.

The next book I chose to read Elisabeth is one that I cherish: The Little Prince by Antoine de Saint-Exupery. I find this book to be nothing short of genius: simple enough for a child yet deep enough for the greatest scholar. Plus, there is something about those illustrations that speaks to my soul.

We finished The Little Prince today. Elisabeth was sound asleep in my arms as I read the last words, but even in her sleep, I think she heard me.

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“And now here is my secret, a very simple secret: It is only with the heart that one can see rightly; what is essential is invisible to the eye.”
  - Antoine de Saint-Exupery

Monday, April 24, 2017

My Heart is Happy

One Decade
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[Elisabeth's profile on her ultrasound picture at 16 weeks gestation and now, ten years later.]

April 24, 2007

On this day in 2007 my heart broke.

"She has hydrocephalus," they said.

And for the rest of the day I tried to remember (while sobbing) what the word was.

I can recall thinking how this word-that-I-can't-remember will now be part of my life forever.


I didn't think I was strong enough to face it.

I felt pain like I had never before experienced.

April 24, 2017

On this day my heart is happy.

She does have hydrocephalus...and epilepsy and cerebral palsy, and cortical blindness, and severe brain damage, and a feeding tube, and a wheelchair, and rods in her spine, and on and on...

And I can now easily remember each diagnosis and surgery and medication, and the many hospitals and doctors and therapists.


I was strong enough after all.

And I feel joy like I have never before experienced.

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Monday, April 17, 2017

Easter 2017

The children all dressed 
in their Easter best... 

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After church silliness...

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The hunt for chocolate eggs...

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The dying of eggs...

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Tuesday, March 28, 2017

From Coloring Books to Textbooks

When I walked into Lorelai's room this morning I looked around. I saw WSU signs hanging on the wall, math textbooks and home work opened up on the desk...  photo 20170328_071707_zpsbzjxqpi6.jpg  photo 20170328_050427_zpseznlr1co.jpg 

She isn't a little child anymore. 

My mind flashed back to a blog post I wrote many years ago... 
to a room that looked very different than it does now. 

I remembered a baby buggy, and children's books, and lots and lots of crayons.


How quickly the time goes, how quickly they grow up.

But I am loving it, every stage, every moment. 

Parenthood is the best.

Monday, March 27, 2017

Off the Balance Beam and Onto the Soccer Field

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[Look at that form!]

In December, Lorelai retired from gymnastics.

This was a heart wrenching decision, one that she anguished over. For a long time she put off making the call, "I just can't walk away," she would say. And I understood. At this level of competition, she was training 16 hours a week. The gym was a second home and her teammates were like family.

But she was struggling as a gymnast. After getting hurt on the beam, she was having a mental block against doing the back hand spring. Instead of progressing she was regressing.  We would have long conversations and I would say something just like this:

"Lorelai, it doesn't make sense to invest this kind of time into something when you are moving backwards. This is your childhood, this time is invaluable to you. If you are truly hitting a wall as you say, then you need to find the courage to move on. This is the time of your life to develop talents, it would be irresponsible to keep going at something where there is no future."

Finally, she found that courage. She said,

"I know that if I don't quit now I will regret it when I am older."

The transition has not been easy. She was used to a rigorous and disciplined schedule. It was how she functioned. Suddenly she felt a bit lost (and that is her exact word). I spoke to her about balance, how with gymnastics she was not living a balanced life. It was all school and gymnastics. I explained that life is meant to be many things: work, exploration, relaxation, recreation. She has a passion for baking and I told her that she should start developing her skills in the kitchen. And her open schedule would also allow her time to train and enjoy her dog. Not to mention the fact that track season was around the corner (her ultimate goal is to do track and field and WSU).

So slowly but surely she learned to function without gymnastics.

"But I need to be on a team," she would say. We would go through all the options; all the potential sports and activities that she might want to try so she felt she was being productive and active. "No, no, no," was always the response we got. "Nothing with a ball," she would say. Then Elsa's basketball coach learned that she had quit gymnastics and suggested she join his friends soccer team. That was met with an absolute NO. But he kept persisting, kept asking...until finally she agreed to try it.

Saturday was her first game.

I was so proud of her.

To join a group of girls that has been playing soccer since they were toddlers - and have been playing together for years as well - that takes courage. To try something new, to become vulnerable, to meet new people, to accept that there will be a learning curve - you must be brave. And so she is. Lorelai is courageous and brave.

For the record, they won their first game of the season, 3-2!

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After the games (they played two), Lorelai went bowling with her friends.

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It was a wonderful day.

Saturday, March 25, 2017

Elsa in Specs

A few months ago we started to notice Elsa struggling with vision. Things like not being able to read the clock from across the kitchen, and opening to the wrong hymn at church because she had misread the numbers. Then she began squinting - scrunching up her face and straining to see things.

We scheduled her with the ophthalmologist and sure enough... 
 20/80 vision.

"If she were trying to get a drivers license today, she would fail," the doctor said.

Then came the fun part: picking out frames!

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In true Elsa fashion, she made everything look good!

On Thursday I got a text that they had arrived and were ready for pick up. Elsa was so excited!

"It will be nice to see again," she said.

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[Elsa's first moment of restored vision.]

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Later that day I looked at Elsa in her new glasses and thought of her tribe back in Ethiopia. I thought about the people there and how glasses aren't available to them when vision starts to fail. I thought about Elsa, and how if she were still in Dunchai (her village in Ethiopia), she would live her life in a blur. I thought of her mother, and the sacrifice she made so that Elsa would have a life of opportunities; school, food, doctors...and glasses

I think her mom would approve.

Friday, March 24, 2017

The Middle School Concert

I have never been very emotional, I'm just not built that way. But last night...I admit that I felt a bit teary! I attended the middle school orchestra concert that both Lorelai and Alexandra performed in. When I sat down and opened the program I saw a list of all the 8th graders with a note that said  
"best wishes for high school!"

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A wave of emotion went through me...

...and then they started the slide show.

I am becoming a sentimental sap!

Being a parent is the most amazing thing ever; the richest experience available to mankind. I have enjoyed and cherished each step along the way -  I love watching them grow up! And Alexandra...let's talk about Alexandra...she is spectacular, a parents dream. What makes me so very happy when I look at her is the fact that she is living up to her potential (which she has an abundance of!). It's not just me wanting her to be her very best, it's her wanting to be her very best. I think I may have written a blog post about that many years ago when she was just a little thing: how do you make a child want to be their best for themselves and not just to be obedient or to please others? Anyways, Alexandra strives for perfection, pushes herself, has a thirst for learning, and is self motivated. I love her.

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And you should hear her play the violin! 🎻🎵

Thursday, March 23, 2017

"She is a Child"

"Your child is beautiful," 
a student said before school. 

I thanked her and told her a little bit about Elisabeth. You should have seen her eyes grow when she learned that Elisabeth would turn ten before her! 

We finished our conversation and she went on her way.

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After school I stood in the hallway with Elisabeth at my side. The bell had just rung and there were a sea of students about. A different student approached me and asked about Elisabeth (she really causes her peers to wonder!). As I answered her questions the girl from the morning walked up to us.

"I decided she is a child," she declared. "I mean, you can't call her a baby, she isn't a baby, but you can't call her a kid either, because she isn't a kid. So I decided she is a child."

So that was the reasoning behind her comment in the morning, which I thought was so uniquely phrased. 

It made me smile.

"I think you're exactly right," I said. "Elisabeth is a child, that's the perfect word for her."

(Even though she will always be my baby 😊.)

Wednesday, March 22, 2017

A Story About a Super Hero

~A Super Hero~

A super hero gets to you instantly when you're in trouble.
A super hero makes you feel safe.
A super hero puts others before themselves.
A super hero is compassionate.
A super hero always knows what to do.
A super hero is fearless.

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[Elsa comforting Elisabeth after a seizure in the car yesterday.]

~A Sister When a Seizure Strikes~

A sister gets to you instantly when a seizure strikes.
A sister makes you feel safe.
A sister puts you before herself.
A sister is compassionate.
A sister always knows what to do.
A sister is fearless.

Tuesday, March 21, 2017

A Post About Spring (and haircuts)

This past winter was the winter-iest winter I have ever experienced. Freezing temperatures, ice storms, piles and piles of snow. I think school/work ended up being cancelled ten times! There was plenty of time to hunker down at home. I read book after book, did a lot of organizing around the house, played games with the children, and enjoyed the white wonderland outside while sitting next to my warm and cozy fireplace. I heard a lot of complaints from colleagues, and friends, "I can't wait for the snow to melt" and "This winter is terrible" and "Oh no, another storm is on the way". But I loved it! It was exciting, it was was winter at its finest!

But now Spring is here, and I feel equally exhilarated by the prospect of long days, flowers, and warmth. I am ready to open windows, go out on walks, and enjoy the sound of sprinklers again.

Spring is here!

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Now to get Apollo a haircut...

Monday, March 20, 2017

A Story About Shoes

Let's talk shoes.

The one and only time that I remember buying Elisabeth a pair of shoes was for a benefit dinner when she was 17 months old. That was back in 2009 . (See post here.) She didn't really need shoes, but it was a fancy occasion and she had a fancy little dress and she just seemed to need a fancy pair of shoes. 

[Elisabeth and me, 2009]
But let's be honest: Elisabeth doesn't need shoes. Shoes are to protect ones feet while walking and that is certainly not something that she does. That being said, I have never quite understood why I see so many wheelchair kiddo's like Elisabeth wearing shoes. Heavens, if I could get away with not wearing shoes, I would!

Anyways, Alexandra was in need of a new pair of Converse and so on Saturday we took her to a shoe store. That's when I had the idea to put a pair on Elisabeth...just for kicks. Of course, I didn't know what size she would wear, so I eyeballed it and actually found a pair that was a good fit. Instantly, she went from looking like a baby to a big kid.

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She seemed a bit confused. Her legs, which she always keeps up in a criss cross position, dropped down and she kept kicking her feet. I wouldn't say she was annoyed, just not sure why her feet felt so heavy. I left them on just long enough to snap some pictures and show Donald and the girls (we all oohed and aahed). Then, I took them off and she promptly pulled her legs back up.

And that was that. 

Back to shoeless.

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