Friday, October 24, 2014

music

For years we've been working on Abby "kissing baby"... I think she's kind of getting it :)
I woke up to You Make Me Brave by Amanda Cook...
Coincidence?  I think not :)
Abby was home sick.  These are always tough times.  They stink but give me perspective.
I struggled last week... big time.  I was fighting a battle of many tomorrows with the grace intended for just today.  I couldn't get the "what ifs" out of my head.  Sometimes it's circumstances that start me down this road. Sometimes it is just listening to myself more then talking to myself.  It's the lies in my head that, given the chance, that can consume me. 
Don't get me wrong.  They are real fears.  I devoured the book Wrestling An Angel by Greg Lucas because although I've heard him speak in person, today I can relate to his story as he has a son with some similarities to Abby (minus her current size and strength). The first chapter said "It gets worse". 
I know he is right
There are victories, but the losses are more and more weighty as hope fades.  The doors of possibilities start to close.  We work to maintain more than increase.  Rehabilitation is harder to justify and insurance starts to push back.  Every effort becomes greater and the voices in my head say...
thrown away...
please... she has value... help us...
Logically I understand some of it as little Millie conquers milestone after milestone with just a little help.  I see... & I know from experience the efforts made when they're younger make the most differences,
But...
What do I do with my big princess?
When do I fight and when do I let it go because the effort isn't equal to the potential victory?
What do I do when I feel my ability to control the situation slipping through my grasp?
We have a problem... she is hurting people around her... she's getting bigger and harder to handle.  A week of sickness ends up with me popping pills and waddling around the house because her sick body isn't as helpful and my back is weaker than it used to be.  She's my responsibility and I don't have any idea what to do?
Abby loves the papasan chair but cannot get out of it! She falls every time and freezes... it's hysterical!
We've entered another round of...
"Let's see if the Professionals can help"
The sensory specialist seems to be beginning her pass off as she suggested meds and was giddy about a behavior specialist she contacted.  I didn't share her enthusiasm.  I know she wants to help, but it's the reality that she isn't helping that is frustrating.  What she doesn't realize is that we've been here before.  We've actually seen "the best in the state of MN" team that consisted of a sensory specialist, behaviorist and doctor of pharmacology.  They didn't really help anymore than the recommendations to be consistent with Abby and the knowledge that her functional age limits her train-ability.  Our  behavior approaches for a one to two year old are pretty much cause-effect, distract or remove.  The OT's approach was intensive one-on-one ABA type interactions.  No one will pay for that for a thirteen year old because we really don't have any statistics to prove it will work.  It sounds nice, but...
I can't be her therapist.  I've tried that.  It's exhausting and I have three other girls and a marriage that all come before therapist on my priority list. 
When she's home, I need to just be mom.
In my desperation...
(it takes desperation before I yield... not proud of that one)

I kneel before the one who holds her  purpose in His hands...
I let go of the plans I have for her and seek the one who sees all her yesterdays and her tomorrows
I give in to a plan I cannot see, but trust the keeper of it... 
The mystery that is Abby was planned  long before me...
she was knit together in my womb for a perfect plan and purpose...
I determined to write down my "to do" list and BE STILL every morning.
I've been given a life I love filled with a husband I adore and the sweetest girls... EVER!
I need to free myself to fully enjoy the moments and let go of the guilt in the list of things I still haven't done.
I ask for clarity, wisdom and direction for which hurdle to engage and seek contentment in it's lone accomplishment rather than frustration in those left to be encountered...
ahhh...
How much of life is simply giving up control and being content :)

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