Two hours she spent at the table.
She didn't want company.
She didn't want to interact.
She didn't want help.
She just wanted to play.
Nobody asking her questions.
Nobody hovering around her.
Nobody trying to make conversation with her.
Just to be alone. To enjoy life alone. To be alone with her own thoughts in her own world.
Ella wanted to be alone...
Six days and five nights at Children's Memorial Hospital was enough for Ella. While she enjoyed having so much attention given to her I think she really enjoyed coming home.
While at the hospital Ella had absolutely no control over her environment. She learned quickly that every time a person she didn't know walked into the room and was dressed a certain way (like a nurse or a doctor) that something most likely was going to happen to her...and it might hurt or be unpleasant. She learned quickly to say, "All done" or "Bye, bye" even before they could say "hello" to her. She also learned that they were exceptional people. They treated her with respect, kindness, and a gentle hand.
Even though she thought something was going to happen when a staff member entered the room; and even though she tried to get them to 'maybe' leave without having to do something to her; she knew that she did not have control over her environment or the authority to decide who was in it. At this realization she resorted to her charming self and everyone fell in love with her. It was a graceful and beneficial dance she did with the staff...they were able to do their all-important job with the skill and expertise they so naturally possess and Ella won over some more hearts!
When we returned home our house was quiet. Within a short amount of time the house itself was filled with equipment. Before she knew it there were an extra 5-6 adults in the house helping to get things in order.
Ella's fatigue and exhaustion kicked in. She grew impatient and cranky. She did the best she could as we had to set up (at least some) of the equipment and get her room rearranged for her slumber. Without the help of four men from church the night would have been a complete train wreck.
Ella was in bed and asleep before 9:00 pm...it was amazing on the part of those who helped us.
The next morning we did her therapy and sat her at the table to eat. Lindsay left for a few hours in the morning and I was home with Ella. I began straightening up the house and going through the myriad of bags we accumulated from our hospital stay and the fundraiser. I thought I might have 20-30 minutes tops to go through some of the things before I had to turn my attention to Ella...not so. I ended up with two hours!!
Two hours she spent at the table playing by herself...happy as could be.
She needed that alone time. She needed to be a regular 'ole kid just playing by herself without a care in the world.
Sometimes it's easy to want to be with Ella all the time...it's in our nature to want to help her. She was amazing to watch this morning as she played by herself, creating her own little world, not being bothered by the limitation SMA has placed on her. There was a certain relaxation that came over me as I saw her out of the corner of my eye while I was busy organizing and cleaning. A calmness...an innocence...that only childhood can produce.
She needed her "Ella Time"...(a short video)...
