For the Love of Ivey

Not one- not one- have I not left- no matter how good, bad, or ugly- and sat and cried. As she perfectly says, it is an emotional whiplash. We sit with Ivey in the room, with Stephanie signing the conversation to her, and we discuss her. I have requested her absence from the hard meetings. For the record, and I think anyone who has ever sat in one of Ivey’s meetings would agree, we push hard into her present levels of academic achievements- we focus on what she can do. Her possibilities. And so far, she has exceeded every goal set in front of her. Still. No matter how stoic or the smile- my heart is breaking and full of pride all at once. mommas go to their quiet space - and cry. So many meeting were spent fighting with people who were supposed to be on her side. Yet, there is a side. The only side we allow in these meetings, year after year- is Ivey’s side. Still, things are lopsided. Matt and I have different roles in Ivey’s life. Matt and I are a team. We sit in the me...

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...

Reminder:  Getting lost in the monotony of feeding tubes, suction machines and medications has taken a swipe at me.  Juggling education needs verses medical needs, finding a somewhat balance has zapped some energy.  Feeling pulled from every imaginable direction, just flat-out overwhelmed some days.  But, I need to do a better job of remembering.  The simplicity of happiness.  Joy in an unplanned moment.  The now.  The little things. Saturday in Target I had a little angel remind me.  As Ivey and I were weaving through the racks looking for her a new pair of footless legging, a woman walked past us.  She stopped.  Looked at Ivey.  Took two steps.  Came back to us.  She looked down at Ivey and said hello.  Then put her hand on my arm and asked if it was okay for her to  ask 'what's wrong with my daughter.'  My trained reflex said, "There's isn't a thing wrong with her, but she does have some medical ...

In my endeavor to expose the hidden thoughts of a mom with a child with special needs, I feel it would be beneficial to expose some of the random (and sometimes not so random) ramblings that surge through my head from time to time.  Also, I feel it beneficial to expose the same ramblings when thinking of my "typical" boys in light of living with a sister with special needs as well.  However, as the years pass, I am learning that many abnormal and weird things that boys do are apparently normal when speaking of boys.  This includes the oldest boy - my husband. Let's start by letting you know that I will label these amusing brain synapses under the tag "Musings". Simple enough.  Found under this label will be the things I often wonder, but fear to ask, or ask, and hear crickets chirping in reply. This will be the section of "Is it normal for me to wonder"........ "IS  THIS  N.O.R.M.A.L?" With Easter fast approaching, I will start with  The...