Courage for Kennedy – Journal

May 9, 2008

3 years…

Category: Treatment – Melenie – 11:38 am

Wow! Three years today…let’s see, I believe Kennedy and I were still in Newport at this time…she was not feeling well…running a low fever and kind of dragging along. I was focused on getting my stuff done and a little annoyed that I had to carry her everywhere…I was NOT going to win Mother of the Year in 2005! She had been whiny for a couple of weeks with no obvious explanation other than she was 4. But then, off to the bathroom we went and with a toilet full of blood there was no denying that something was terribly wrong with Kennedy.

Now, I will not rehash all the gory details today of that first week…many of you know the story, and if you don’t, there is more than one entry covering it…just start at the very beginning…

What I would like to share today is where we are…not where we have been…

Today, Kennedy runs and plays and rides horses and laughs and sings. Today, Kennedy is learning to read and write and add and subtract. She learns about bugs and whales and how a seed becomes a plant and how the old kingdoms of Egypt were united. She feeds goats and loves our horses and nurtures our baby chicks. Today, Kennedy is an artist, a dancer and she aspires to work for Santa.

What you may not know is that today, Kennedy struggles to run and jump and dance because without her braces her feet turn in, she trips over her toes, and she hyperextends her knees. That even today, with her braces, her knees and feet will hurt and no one can figure out why or if it will ever go away. Today, she will continue to struggle with phonics because of her slow auditory processing and writing will be difficult because her fingers are weak and tire easily from holding a pencil. Today, math is a foreign concept without many different approaches so including her worksheet, we will use counters and fingers and lots of brain power to answer that 3 + 3 = 6. Today we will work on her bug lap book and while she will know the answers to the questions, it will take her more than ten minutes to “find” it and she will copy my words in her lapbook but will not be able to read them. She will feed the goats but have to be closely supervised so they don’t knock her down because her balance and coordination are that of a four year old. Despite her overwhelming desire to do so, Kennedy can not ride a bike today. Today, she will call Grandma or Daddy on the phone and I will have to remind her to say, “hello” first and “goodbye” before she hangs up as she becomes so worried about what she has to say and tries so hard not to forget, that she appears to be rude on the phone. Today, Kennedy will struggle to answer questions as it takes her a while to understand what is said and then formulate a response. She will have to use her visual board to remember what needs to be done to get ready in the morning and through her bedtime routine because otherwise she will go in the bathroom or her bedroom and not remember why she is there. Kennedy will struggle in conversations, she will become over stimulated from too much sensory input and she will tire more easily. Yesterday, she had an MRI, that took two hours, of her hips, knees and ankles, plus an hour long oncology clinic appointment. Next week she will endure eight hours of testing to find out to what extent the radiation and intrathecal chemo damaged her congnitive abilities, or at least if they are better or worse than they were a year and a half ago…they don’t get better…we just learn to adapt.

But to look at her…with her bouncy blond curls and toothless grin, you would never know…Kennedy is full of hope and resiliency and she does not let anything stop her in her pursuit for happiness.

She is my hero.

While we try to teach our children all about life,
Our children teach us what life is all about.
~Angela Schwindt

It is never too late to have a happy childhood. ~Tom Robbins

Making the decision to have a child is momentous. It is to decide forever to have your heart go walking around outside your body. ~Elizabeth Stone


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