Durry (don't worry)

It has certainly been an exciting week around here, filled with ups and downs.  Last weekend, Ellie barely slept at all and started to decline cognitively on Sunday.  I took her to the hospital to get her sodium and shunts checked on Monday.  We knew it was probably being caused by one of 3 s's--sleep, sodium or shunt.  Spent most of the day at the hospital.  Came home and Ellie began a sleeping spree which turned into us not being able to awaken her by Tuesday afternoon.  A wonderful hospice nurse was sent round to assess Ellie and help us figure out what to do.  By the time the nurse left, Ellie was opening her eyes again.  On Wednesday morning, Ellie woke up with, " I think I have a stuck yawn."  She has been awake since then (now Thursday afternoon).  She has started to decline cognitively once again.  Now she is laying in bed staring, dozing at times.

Here is a letter I received from Ellie's school bus attendant.  One thing I never questioned about Barb was that she was determined to take the best possible care of Ellie and that she loved Ellie far beyond the short amount of time she'd known her.  Even so, I was shocked when we received this touchingly beautiful letter from her.

Greetings from Ellie's school bus attendant.

I have thought long and hard about what to say to you Ellie (and family) as I keep up-to-date with your physical progress.  Finally last night the words came to me, and I felt compelled to share them with you.

I remember the first day Ellie rode the school bus in 2010.  Picture the scenario...a neophyte attendant and driver (both first year on bus duty) are asked to transport a little girl home.  Sadly she wasn't listed ye on our sheet, sh we had no physical address to take her to.  Ironically though, she looked remarkably similar in physical characteristics to another young female student.  That being the case we assumed she was potentially confused about her name and proceeded to take her to the drop off for the other child (not knowing at the time that said other child stayed after school all school days and was picked up later by HER mom).  So we proceeded to the other child's home, which happened to be in an apartment complex.  Several times I asked Ellie which apartment she lived in.  She would consistently reply..."I don't live in an apartment, I live in a house."

to make a long story short, we definitely were NOt at Ellie's house.  When we realized we didn't have a place to safely take her to, we were instructed to return to the school.  I remember looking deeply into Ellie's eyes as I told her this.  She studied me for a moment and a crooked half-smile poked out. "Durry" (don't worry) she said.  She then proceeded to tell me about the special language she had developed and offered to teach it to me.

I was delighted by her attitude and air of resolution.  I might not have known where Ellie was supposed to be...but Ellie knew EXACTLY where she was supposed to be...Home surrounded by the love of her family.  Home where she delighted in an almost brand new baby sister.  Home where her brother Ben (when he was in the mood) would race tot he bus and grab her backpack to lug inside.  Home.

Unfortunately the days Ellie rode the bus were far too few, selfishly for me.  I say selfishly because through Ellie I was learning so much.  I learned that though Ellie has been burdened with debilitating physical issues she has also been blessed with a keen insight and talents that she shares freely.  More importantly, I've learned your body can not restrain your mind or attitude.

I can't remember the number of times she would sense my concern about her physical state, simply look at me, smile and say,"durry".

It is said that everyone you meet comes into your life for a reason.  A day, a week, a year, a multitude of years.  The length of time doesn't matter.  What Does matter is that these people leave a handprint on your heart.  I am proud to say I have many "handprints" on my heart.  Ellie's is right there with the rest of them.

Wishing you all a measure of serenity and tranquility during this holiday season.