For the Love of Ivey

When Ivey was a baby, I literally had drawers and spaces in her closet labeled, everything had a space, a place.  One special friend loved showing off Ivey's closet to newbies coming by for a visit. This level of organization mystified my friend. Secretly, I wanted to go back to haphazardness.  Justifying why I did this is simple.  At the time, I had friends helping me with my laundry, as were my mom and some night nurses.  With so many people, I found it more efficient, for all of us, to label everything.  No one had to search or guess where things belonged.   This approach to find order has only amplified with time. I have come to accept that being Ivey's mom has brought out a controlling aspect in my personality. For the record, I have always found peace in order and organization.  It could be described as controlling, maybe.  Ivey ramped up my need for order. On her hard days, or in times leading up to what I know will be hard, my need fo...

It's 2 am and I am up replaying one particular event of the day. It's one of those things that my mind holds tight, edging itself in my mind in a way that most people don't give a second thought.  But in Ivey's world,  small events can be a reminder and rather symbolic of just how overlooked individuals with disabilities are in this able-bodied world.  Even in this tumultuous time of political correctness, the world of disabilities is still not part of the conversation. So here I am up at 2 am replaying today being grateful for a moment and opportunity to meet a stranger in a parking lot. I am reminded that education, means, and even faithfulness can never replace the kindness of strangers.  And, my girl has angels all around watching her.   Over the years I have often found peace in what I have called "God Moments". Those moments that could be meaningless, yet, they happen at just the precise moment, in just the perfect way. I can look back at slivers o...

Last night I got my girl bathed and dressed for bed.  Our usual nightly routine.  Then we began our other routine in prep for the morning hustle to get out the door for a 6 am arrival time at Day Surgery.  The routine is necessary.  We discuss what will happen to her once her surgery begins.  Who will be with her.  Possible things she might feel and hear.  I explain that they may not know what she is requesting through her attempts to sign or her sounds as she comes out of  anesthesia   and that she may not know where she is, but mom and dad will be close by, just waiting to get to her.  I reassure her that even though she will not know the people she is with during surgery, they care for her deeply and have her best interest at heart.  They will be as gentle as possible. And as always, this is the point where I cry.  I apologize to her for making decisions on her behalf, all based on the good intentions of doing what is b...