[/caption]Clarification that YES, we still are in the hospital, just not in the PICU, but instead on the oncology floor. Yesterday was filled with confusion (for the adults even, not just Ellie) over what would occur today. First we were going to have a care meeting with all of our doctors to figure out a plan for us. Then, we met with Dr. Iskandar he explained that he really felt that there was a chance that her shunt is malfunctioning slightly and causing some of the problems we have been seeing. We agreed to the surgery (a "minor" brain surgery called a shunt revision) which will be performed today at 2:45.
Ellie has been so much more lucid over the last day. She was even able to eat on her own and go to the bathroom out of bed. Today her sodium is a bit high, so we are working to correct that.
Yesterday, I was feeling a bit crazy weepy and thought it would be good to have a visitor, I immediately thought of our excellent friend Esther. Esther then texted ME as if she had gotten my mental text message to ask if she could come for a visit. As I have mentioned in previous texts, Esther previously lived in Memphis and she has met my entire family. She has become an honorary member of my family. Here is what she wrote about Ellie:
[caption id="attachment_3022" align="alignleft" width="300" caption="Esther and Jonathon at a Ben birthda party."]
[/caption]I have been thinking a lot about Ellie especially lately. Before I go to sleep and when I wake, I think about her and say a little prayer. In my mind, I go through all my different memories with her. From when I first met her in Memphis to living near her now in Madison, Ellie is definitely unique – set apart from other children in her own way.
Ellie has taught me a lot over the past few years. Sometimes when I leave her, I get so humbled and encouraged by her to the point of tears. One of the main moments that stick out in my memory was the morning I was visiting her before one of her previous brain surgeries. Dressed in my usual black attire and with a heavy heart, I approached Ellie’s bed in the pre-op area. She was into giraffes at the point and I brought one for her. When she saw it, she shot up in bed and said, “No waaay!” and I said “Waaaay!” This girl was extremely jilled right before brain surgery! She always manages to make ME smile even when she is going through the roughest times medically.
Agogo was there too right by her bedside with a cheerful smile. Somehow we got on the topic of favorite colors. At the time, I think Ellie was into bright yellows and oranges. She couldn’t pick just one. Agogo I think said she liked pink. Ellie then asks me, “Esther, what is your favorite color?” I naturally responded “black” as I appropriately was wearing. Both her and Agogo just stared at me. You could literally hear a pin drop. Ellie asked me, “Why?” as if black couldn’t be anyone’s favorite color. I remember the look in her eyes clearly. When Ellie talks to me, she looks at me as if she is looking into my soul. At that moment, I just felt such heaviness in my heart and had the urge to pour out my soul to her.
I joke about this moment with friends but in actually, Ellie has made me see “color” in my life and those around me. Whenever Ellie came to visit or I went to visit, she would be brightly dressed so proud of her outfit and how it made her feel. She always exudes happiness and it is definitely reflected in her outer appearance.
My wardrobe is still filled with a lot of black clothes but I have to say, I have been buying colors now to the shock of many friends. Like Ellie, I too want to exude happiness to others.
[caption id="attachment_3020" align="alignright" width="300" caption="Esther, her son Jonathon, Kaitlyn & her dad, Mark"]
[/caption]It’s funny but maybe this is a small reason why Ellie loves peeling crayons. Colors shouldn’t be hidden by paper covers. They need to be naked and shown in all their glory. Don’t get me wrong - I am not ready to streak through the streets but I definitely have made one step towards taking off a "layer" and showing some color.
To Debi & Thom, thanks for letting me into your family and into Ellie’s life… even if Ben still thinks I am Jennifer. He can call me whatever he wants, I’ll take it!
Love you guys.
Esther
And here is a text Esther sent after her departure:
Ellie was doing a little repeating while u were gone. I said to her when she smiled, "I love ur smile, u r so beautiful". She repeated this sentence back so I thought she was repeating but then she added "Esther" at the end with a smile--that was the highlight of my day.
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