Wednesday, July 09, 2014


I'm a reader, and always have been.  When I was much younger, I would leave the bedroom door open, so that after "bedtime" and lights out, I could read by the light of the hallway lamp that my parents left on for my brother and me.  Of course, in terms of the health of my eyes, this was not the best choice.  Alas.  Too late to change it now.

In any case, once, when visiting my cousins in Greenport, NY, I was introduced to a book called "Wren" by Marie Killilea.  I was still quite young, under 10, I suppose, given when they moved away from Greenport.  This book was non-fiction, and the story of Mrs. Killiea's daughter, Karen, born prematurely, which resulted in her developing cerebral palsy.  At the time Karen was born, the doctors recommended that she be sent to an institution and forgotten there as she would never be able to learn, communicate, or care for herself.  Karen's parents said forget that, took her home to her family, and she grew up and thrived and learned and communicates and cares for herself.  Yes, I know that I changed the tense there, but that's because Karen is still alive today (  This was the first time I read something about special needs.  I was enthralled - look at what this family is!  Look at what this little indomitable (I'm not sure I knew that word then) did!  I know I was impressed with them, with her.  I'm not even sure if my parents ever knew this.  I bet they did.  They always knew way more than I thought they did about my life.

And I re-read it, probably 20 times.  I was a big re-reader as a child, and to a certain degree I still am.

At age 30, I picked up the new book by an author I favor, Lorna Landvik, and started to plow through it.  It's called "Welcome to the Great Mysterious" and about sisters (one of whom has a son with Down syndrome).  A subplot in this book is about the son/nephew and his best friend, who has CP, and who dies during the pages of the novel.  I was pregnant with Connor when I read this, and Lee came in and found me in tears reading this book.  What's wrong!?  Oh, this stupid book...

This one I have not yet re-read, but it's still in my small actual-book library.

Both these books must have been somehow placed in my range to help me prepare, not that I could ever have properly prepared myself.

It's been 5 months.  Well, a little over that.  Lately, we've all been having our own funks, and I imagine that it's related in some way to Connor.  Drew decided after months of growing his hair into an epic nest of insanity each morning to have us give him a buzz cut.  "I want a haircut like Connor's," he said simply to Lee.  So Lee did it, and Drew was TRAUMATIZED.  Seriously.  He hated it.  We talked him through the lack of tangles (which had been an ongoing problem), the quick dry situation he was now in, the fact that putting his swim cap on now will not hurt.  And of course, the old stand-by - it's hair - it will grow back.  He's come around to it.

Yesterday morning, I sat on the sofa with Tucker snuggled in to me, and Drew snuggled in to him, and I rubbed the top of Drew's head.  After about a minute, the message finally made it's way from my fingertips and palms to my brain - this feels as it did when I would rub Connor's head - and I clenched my jaw and fought the tears welling in my eyes.  I tried to tell Lee later, and he said, before I could even finish my thought, "It's feels like Connor."

There are so many things we are just not prepared for.  I am blessed that the people I know will allow me to contemplate my bellybutton while I work through this at times terrifying grieving process.  You don't know when you wake up in the morning if you will be having a good day or a bad one.  But you have to get up.  I have to get up.

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