Giant steps

I was blessed to be given the "You Rock award" at school.  Means that a student took the time to write about me.  Coming from one of my kiddos, this is absolutely amazing!!

Rachael got her hair spray painted pink for her school's Breast Cancer awareness Pep Rally.

Libby, with Cindal behind, at our Pink Out Pep Rally.  Caprock raised over $1000 to donate to the Harrington Cancer Center.  Wow!  The stands were filled with PINK! 

Liberty on the Lite Gait.  Imagine a time when she could walk without sooo much effort.  It has been way too long since we have seen her take real steps, full stride steps. She was taking giant steps!  Steps forward.....  It was the folks at TurnCenter who are trying this out for Miss Libby.  Hoping the video will work.  If it doesn't it is uploaded on Facebook. 

 

Tomorrow begins week nine of classes in this school year and I feel like I've been hit by a truck- repeatedly!!  We just keep getting back up and going back at it.  The added strain of the newest test in Texas, STAAR, is making Rachael and I struggle more than ever before.  My campus also has new administration which means lots of changes and different expectations.  It seems as if due to the low test scores, everyone is so busy pointing fingers and assigning blame for why the kids didn't pass, that we're not focusing on teaching.  Too much pressure for a test that we have very limited information on. I am surrounding by amazing teachers everyday who are doing the best they can.   We are all pedaling as hard as we can.   Sooo much to do all the time.  We are trying to stay afloat.  I've been wondering why I didn't go for the coaching position or teach speech?  We have to keep focused on doing what is very best for the kids and remembering that they are what are most important.   I just want to teach.   

 Libby's new med for Dystonia, Artane, brings with it some less fun side effects.  This drug dries her body out inside, which has meant some troubles getting enough water into her her.  Another fun little addition are the nose bleeds.  Pulled up at school on Friday to a real gusher!!  "Yuck" and "Gross" are Liberty's reaction.  So, more fluids and cold mist vaporizer all weekend to help ease the drying.  Every day she is so different.  Today she is wiped out and there is no explanation.  No cold front, no hormonal business, no pork sneaking into her diet, no idea.  I am always glad when she has a rougher day and we are at home.  That way I can lay her out flat for some mandatory rest time. 

Had a couple of emails from our WISH Granters and do to time constraints and Libby's need to rest, they are now looking at a cruise to Europe!   WHAT???   Seriously?  A cruise?  With lots of nap time in between this might be wonderful!!  We really hadn't discussed cruises since Libby's experiences on boats has been small fishing or skiing boats and her equilibrium is off. 
My response was "as long as she gets to see Rome" she will be delighted!   I asked her about it, and she is nervous about the thought of a big boat.  I gotta admit, I am too.  How much Dramamine can Mommy have and still be able to function?   Just completely fascinating to look cruises up.  Disney does go to Europe, in case you didn't know.....  Still can't believe this is a possibility.  Still can't believe that my child qualifies.  Just can't believe....

Talking with Rachael and then Momma the Hun, AKA April, last week and I came to a realization.  It is not that the grieving process is completed in one round.  You have to cycle in and out of the stages many times.  This year, as I am dropping Libby off in the ACC room, I feel a sense of disbelief and pain.  I didn't have a child who belonged in there and now I do. I was supposed to be the person who always helped those kids and went above and beyond to make them feel accepted. I was raising my daughters to accept every one and be everyone's friend. Now, I have a Special child and have to rely on the kindness and acceptance of her peers.... There is also the acceptance of knowing that she is loved and well cared for within this group of Special friends. 
There are the late night fears and guilt that can still take my breath away and bring me lower than a worm's belly.  The different choices I could have made to keep Libby safe, the What if's and How come's..... I had been thinking that I should be over it by now, and most days I am.  I have an acceptance of the life ahead of us and the adaptability required of me to keep her healthy and happy. 

After seeing the video of Libby walking on the Lite Gait apparatus, it occurred to me that that is what I need- metaphorically.  I need belts and springs to keep me moving forward.  I am also on a tread mill, not the kind that my middle aged thighs need, but the grief mill.  I take three giant steps forward and fall back- on and on.  As long as Libby keeps taking steps, whether they are the little Mrs. Magoo or giant heart leaping steps forward in progress, it is enough.  It doesn't matter which round I'm currently going through in the grieving process, I'm still moving. 

We have to keep moving. 
Now, I have to wrap it up as I watch Libby get homemade tartar sauce all over herself and the chair.  Must be some really good fish sticks.....lol

Hugs and hope,
ileana