Wednesday, July 14, 2010

No words

http://www.youtube.com/watch?v=u1JBSQMkQEo  "That's What Faith Can Do" by Kutless
I often tell myself I need to post more often, but find that sometimes there just aren't words.  I lack the words to fit the feelings or circumstances.  I feel the tears welling up and then spill out down my cheeks.  I know I'm powerless to stop them.  If you were to ask what was wrong, I'd truly have nothing to say.  It's not that I'm crying for nothing, but those tears are emotions before there are words to describe them.  I find the emotions are attached to an event or series of events, but the words often lag behind... sometimes days, but often it's more like weeks or months.

The events of the past month or two (like I said earlier, I don't often live in real time frames).  So much crazy happens on a daily basis that a bit of crazy must reoccur for weeks or months before I take notice and flag it as a problem.  I flagged the crazy unstable Abby a year ago when we started to consult with a behaviorist, but a year later and a parade of countless professionals with endless meetings and we're still at square one.  I can deal with that reality better if there is a plan of some sort.  If we're at least trying something I can live with it, but when there's nothing left to do I find myself desperate.  I'm angry at other special needs kids who are progressing.  I don't even want to connect with other parents because most kids with disabilities are at least moving forward.  They can learn something.  Abby may learn something, but just as soon as it comes it goes.  Her brain seems to be locked up.  Whatever skills she learns goes away.  She had psychological testing done this year and we saw words like mental retardation- severe.

I think the significance of this past month was the reality of being with Abby 24-7.  We had to stare at the ugly reality for days on end.  After only a few days we were spent.  I'd exhausted all the tricks in my bag of treats to no avail.  We saw our reality crumbling beneath our feet and we stumbled to remain upright.  I wanted to crumble with it all, but held it together as we were among family and friends who hadn't lived the past nine years with us.  They hadn't seen what was taking place. Somehow the family was able to overlook our troubles because they didn't see them.  They saw them this time.  Our reality was a bucket of cold water on a winter day... confusing and sort of painful.

It's funny (not really, but for lack of a better word) how they really never saw it until now.  I remember drowning in my own tears and wondering why they seemed to not notice.  I couldn't see the snapshot they got.  They only saw us when we were in a good enough place to come around.  We haven't seen stable, happy Abby more than a day at a time lately.  We don't know what we'll get from moment to moment let alone day to day, but we ached to see family so we went.  We knew somehow they would never see us if we didn't go there so we went.  We couldn't wait any longer, so being the optimists or in total denial we took off with our beloved Danielle in hopes that the few things she did like would carry us through.  Normally she likes a car ride, new people, getting out of the house, and swimming.  The car ride threw her into fits of rage, new people got attacked, getting out and staying in both were painful and swimming was periods of contentment mixed with poo and tears.  Naps and bedtime were our only periods of assured peace.

I've documented food intake, drugged to the edge of "is this okay?", disciplined, played music, toys, videos, massage (hard and soft), brushing, more and less sensory of every kind I've ever heard; but there is no pattern.  Nothing in particular and everything in general can bring out joy or pain (to anyone within reach or she's added chasing to her repertoire of skills).  I've got nothing left.  I've sat asking for strength for today and then again the next day.  Andy wanders around the house trying to find something he can fix.  The other two try to keep busy without getting in Abby's path.  MaryAlice is still foolish enough to come close to Abby and I have to fight anger when she gets her too.  The pit in my stomach starts when I hear her up in the morning.  I'm beyond thinking there's anything I can do but wait for her to come around.  She may or may not.  She's on another new drug after I swore them off a month ago after nearly a year of trying and dealing with the side effects.  I'm jealous of Andy who "gets" to go away as if he's not working twelve hour days himself.  I want him to come home to a sanctuary rather than... this... whatever this is.  There isn't a definition for this mayhem of instability we keep.

I'm still once again tonight.  For this is when I hear Him calming me from within.  She's in bed. Happy sounds after wrestling her up the stairs while my help sneaks out the door spent and not wishing to change a stinky diaper. I Just changed her diaper as her bed is her toilet.  She greets me with the biggest smile in the world, a big sloppy kiss... and a left hook- ouch!  I kiss her goodnight and walk away... hmmmm... He never promised an easy road, He just promised he'd be there.  He is.  I'm calm and ready for another day.

5 comments:

  1. I am a new reader to your blog, but found you through the registry blog. You write beautifully, so raw and real. And this post really touched me.

    Let me explain, my daughter is 2 1/2 and has 18q-. I have also been experiencing some things you elaborated on. Not nearly as strong as what's been going on at your home though. But, we have reached a point in the last 6 months or so, that our daughter has stopped progressing as well. And that rang true about hearing about accomplishments from other special needs kids. It has been hard, but reading your post let me know, that I'm not alone.

    I hope we can get to know one another better!

    ReplyDelete
  2. Praying for you guys today!!! You are an amazing mommy and wife and Abby is so blessed to have you and Andy as her parents!!!

    ReplyDelete
  3. Allison,
    I am not sure how I stumbled across your blog, but was certainly surprised when I realized I knew you. I read this entry and can so relate. Our issues with Reese are different, but the feelings are so similar. The lack of progress, the unknown, the struggle, the exhaustion that disappear for a second with the flash of a smile or a big sloppy kiss, even if it's followed by a left hook. Our "hook" is usually a seizure, but even those are tolerated in the midst of a smile or random giggle.

    I am glad I found your blog. Take care.

    Sending you peace and light, Nena

    ReplyDelete
  4. Of course I would like to keep in touch with you Allison! Thanks for the comment on my blog. And I would love to invite you to the new one as well, just need your email (you can send it to me at ali_pete83@hotmail.com) or I'm on FB too under alisha.peters

    Can't wait to hear more from you!

    ReplyDelete
  5. If I may...share this with you.

    "When I tried to understand all this, it was oppressive to me till I entered the sanctuary of God; ...My flesh and my heart may fail, but God is the strength of my heart and my portion forever."
    ~ from Psalm 73

    I have so much respect for you in sharing this. I can only imagine how difficult it is. As we have moved home to Kansas I can only partly relate to feeling like people don't know what it is like for you day to day. My family never saw the really tough days of the last 18 months for us. But it is good to share, and I am learning how. I think over time it is the best decision. I will be praying for you. I love these updates because then I know how to direct my prayers. Grace and Peace to you from the Creator of the universe.

    ReplyDelete

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