Monday, October 10, 2011

Job's Heaps of Ashes & My Bowl of Shards

I have two different ideas swimming around in my head this morning as I sit down to write.  I've sat down to write several times in the past couple of weeks but I get distracted by all sorts.  But this morning, I'm going ahead and applying some focus.  I was recently talking to a friend from church about what I've termed, "My Big Bowl of Dreams." In this bowl, I placed the things I most wanted in my life:  a husband, a career, children, happiness, etc.  There's not too much in this bowl that I felt was far-fetched or unattainable...certainly no pipe dreams.  But God seems to be teaching me lately that my bowl of dreams holds too many of my own plans.  I feel the pull of His perfect will on the edge of my bowl as a I keep my death grip on the opposite edge.  I can't say if I'm ready to relinquish.  There are so many unfulfilled dreams in that bowl--good dreams, with purpose and wonderful intention.  There are broken dreams whose pieces I cannot just discard.  And sometimes, I can't tell what's broken and what's whole.  Sometimes, it feels like the whole, damn bowl is filled with nothing but shards.

I own a beautiful set of Haviland china that belonged to my grandmother.  It is old and in the way of sentimentality, priceless.  Recently, a saucer from that set broke.  Since it is authentic china, it did not glue well.  I held onto those pieces stubbornly.  Sure it wasn't good to use, broken as it was.  But I just couldn't dump it in the trash.  I reasoned that if I just let it keep company in my "junk drawer," eventually, I would come up with some creative use for the pieces that allowed me to hold onto them.  But eventually, I just had no place left for those fractured, sad pieces.  And the idea that Hayden might find the sharp edges and hurt herself was enough for me to finally let them go.  My comfort was that I still had the rest of the set, unbroken and still precious.

So, you see, I have a hard time just dumping the pieces of those broken dreams.  Because what if I could glue them back together or even find a use for the pieces?  But history and experience tell me that I will have to let them go (both for practicality as well as safety).  More than once, I've hugged those slivers too closely, mourning their loss, but cutting myself with the sharpness of their jagged edges.  And while my analogy above makes perfect, logical sense, easier said than done.

To parallel this inner struggle, I have been dealing with an outer struggle in the way of services offered here in PA.  There is no system on earth that is not in desperate need of restructure.  PA's services for special needs children is no different.  Here is the short-list version of our fracas with the system:

*The case worker who referred Hayden for services insisted that she would never handle in-office behavioral therapy and pushed the in-home therapy with only a 20 minute interview, despite my explaining that Hayden does not handle unfamiliar, clinical settings well at all.

*The in-home therapy is not therapy but a "skills transfer" program to help parents deal with negative and troublesome behaviors; of which I need no assistance, as witnessed and attested by our behavioral specialist consultant.

*We were told about social skills play groups & encouraged to get involved with them by the psychologist who even gave us pamphlets but didn't include that option in his report so we would have to get an addendum.

*Upon trying to get the addendum (which you are supposed to be able to just call in, have the psych review the eval, and write it out for you) and having to call two different places just to get in touch with the psychologist, we were told that we had to email him directly and that he would probably require another face-to-face meeting with us and Hayden to write out the addendum

*This same psychologist, who did Hayden's initial eval, "included" info (more like, copied & pasted from another source) that in no way pertains to her (ex: work on getting along better with siblings, work on eliminating self-injurious behavior).

*I was informed that obtaining a case manager would help me navigate the system more easily.  Hayden's behavioral specialist consultant recommended that we ask specifically for a "Blended Case Manager" who would be more hands-on and helpful in recommending programs, opportunities, grants, etc., for which Hayden would qualify. Upon meeting with a representative from the service unit that was recommended to me, I was told that there was no difference between a Blended Case Manager and an Administrative Case Manager--which I was informed later is completely untrue.  It took us 3 appointments to finally get a Blended Case Manager.

*The Blended Case Manager to whom we were assigned met with me once and returned 3 of my 7 phone calls, one of which was the call she placed to me to discontinue services after I switched to a different service provider.

*The first Therapeutic Staff Support employee who was assigned to us to work with Hayden in our home (think Behavioral Therapy) quit after meeting us.  The second one, did not speak English as a native language and her accent was so thick, I could hardly understand her, let alone Hayden, so we discontinued with her.  The third was great...for the first 2 meetings and then she just stopped coming...even though she was supposed to come to our house 2-3 times a week.

All of that to say that our initial excitement over the services we thought we were coming into have been tempered by the reality of a damaged system.  But again, logic wins out here.  We HAVE to use this system, broken as it is.  We are not independently wealthy.  We need the funding provided so that Hayden can get therapy and participate in social skills groups.  And while there have been issues and headaches, there are also blessings.  Hayden's team at school is just amazing.  We've often said that the one of the only good things about living in Bartlesville, was that Hayden's team at school was exemplary:  caring, knowledgeable, willing to work with Hayden, understanding, and compassionate.  We are blessed to have another team cut from the same cloth.  And this is just one of the many blessings that we've been given here, despite all the BS.

So if I can easily toss aside the pieces of my broken "dream" for a perfect system, and focus instead on the shiny orbs of blessing that have been given to us in spite of all the messiness, why can't I do that with my other broken dreams?  It is a mystery to me right now.  I guess I will just keep on opening my heart to God's healing salve and continue to let him pry my hands off the edge of my bowl, finger by finger.


  1. My heart hurts for you and Kelly. What a mess!!!!! I'm so sorry!
    Your writing is beautiful. You and Kelly are gifted writers. Y'all should most definitely write a book. I'll loan you one of my creative book titles. :) better yet, move close to us & we'll co-write together!!!!!!! Love ya, friend.

  2. I agree with Kristie! About EVERYTHING!