Monday, December 31, 2012

Resolution to Remember

Been feeling kind of out of whack for a while now, and Lucy's not been terribly into anything I've been trying to do with her.  Bert's been a little puppy demon, sucking up all free time and teething on our hands.  Nothing that's a real problem, just little things to make one feel unsettled. 

Last night I cracked open my Bible for the first time in a few months.  I do well reading regularly for awhile, then, slowly, other things start to creep in and take up that time, and all of the sudden I haven't read it in weeks.  Anyway, opened it and read some last night, and then again this morning.

And you know what?  Lucy and I had the BEST day today!  We woke up early, and she got her nap done early (and she fell asleep right away and woke up cheerful, which is definitely a rarity!)  I got out some crafty stuff to work on decorations for New Year's Eve, and she was all smiles and laughter, and totally into participating.  Bert was a model citizen, with no accidents in the house, and he stayed curled up underneath us or next to us for most of the day.  Today was what I imagine every day will be like when I go to be the night before.  Before I wake up late, before Lucy wakes up late, before Bert pees on the floor, before Lucy hums with her eyes closed through every activity I present to her.

This is no coincidence.  This is my life, if I choose to remember to put God first.  I'm not saying that will make every second sunshine and roses - that's just not what life is.  But I fully believe - I know - that every time I remember to give some time to God, my life is more positive.  Things fall into place.  Attitudes are better.  It may be that Lucy is cheerful.  It may be that Bert is behaving.  And it may be that my attitude is better when I look out at the chaos that is my life, because my heart is in the right place.

I'm hoping that in the new year, I will remember this more often than not.  After all God has done and continues to do for our family, He deserves to have my love, respect, and devotion.

Sunday, December 23, 2012

I Love You So...

Lucy got a new book for Christmas from some very dear friends.  She can be a bit picky when it comes to new stories, but I read this to her a few afternoons ago, and she was fairly receptive.

The book talks about all the different situations that a child could be in, and the parents tells the child how they love them, no matter what the situation.  It came to one where the child says:

       "Even when I'm SICK... and I can't get out of bed?  Do you love me better HEALTHY than with 
        a fever in my head?"

I stopped at that point and told Lucy how much I love her, just exactly the way she is.  She started to fuss, which she sometimes does if I pause during a story when she wants me to keep reading.  I wasn't sure if that was the reason this time, so I asked her if she wanted me to keep reading.  She kept crying, so I asked her if it made her mad that she couldn't move.  She kept crying.  I asked her if it made her mad that she couldn't talk - and she stopped crying and looked at me.

It is beyond heartbreaking for me to not be able to understand Lucy.  We haven't found a particularly effective way to communicate.  But as hard as it is for me, I can't even imagine how frustrating it is for Lucy to not be understood.  I have tried to explain to her numerous times that we can work out a yes/no system - that if she would follow directions I give her, I would know she's understanding me and we could understand her better - but she is so stubborn.  I really feel like she just wants to be able to talk, talk like we do, not differently.  No matter what I do, no matter what alternative communication we work out, she can't yet talk like we do, and it breaks my heart to see her so frustrated.

This blog post isn't any earth-shattering revelation or funny anecdote.  It's just a mom, talking about how SMA affects her child.  I know that any parent hates to see their child struggle, especially when there is nothing they can do to rectify the situation.  SMA just kicks that helplessness up a notch. 

As you celebrate your Christmas with your family (and we are so blessed to do so with ours, at home!), please take a moment to add to your wish list a cure for SMA, so that some year, Lucy can tell me, in her own words, what she wants under the tree.

       "I CAN'T IMAGINE life before YOU came along... me there singing senseless, no meaning to             my song.  Call it MEANT TO BE, or simply blessed fate, you fill my heart WITH LOVE... and 
       for THAT I celebrate."

Sunday, December 2, 2012

The Puppy has Landed!

This weekend we went to get Lucy's puppy!  He arrived early in the morning, so I woke Lucy up and took her downstairs to greet him.  She was less than thrilled (Lucy likes to wake up on her own watch.)  After some puppy snuggles, though, she warmed up to him :)

He's nice and all, but could we shoot for an hour later, next time?

We talked to Lucy about names, and she was particularly fond of Baxter at first.  Over the month, she decided she liked that one less, so we threw out some other names, and she decided she liked Bert.  As in Bert and Ernie, from her all-time favorite show, Sesame Street.  When Noah went to pick Bert up, they asked him if he had a name picked out, and he told them Lucy's choice.  They said it was perfect; the parents of our Bert were named Bert and Ernie!  So he's actually Bert Jr.  When I heard that, I knew that we had picked the best puppy for Lucy :)

He was very nervous at first, and squeaked a lot as he tried to decide if we were going to toss him around or put him in an ugly sweater.

We did the sweater.
Bert was calm all day, slept and snuggled Lucy a lot.  He preferred to have his face as close to Lucy's as possible.  He does not like to be alone, at all, or even far away from us.  Toward the evening Bert decided that doggy was not going to be our main dinner course, so he became a little more playful.  He likes nibbling and licking Lucy's fingers, which she also enjoys, as long as Bert knows when to quit.  He already seems protective of her - when Noah does her chest PT, Bert gets to Lucy as fast as he can and puts his head on Noah's hand, to stop him from "hitting" Lucy.  He got used to her suctioning very fast too, and can now sleep through it.
Lucy likes being greeted by Bert in the morning.  We are crate training him, and he's not too thrilled about that.  We are getting a little less sleep than we normally do - Noah least of all.  We decided that Noah would do nighttime puppy duty, and I would stay with Lucy while we were in the transition phase.  Lucy heard Bert barking and crying a few times, and was not at all appreciative of her slumber being disturbed (gee, Lucy, you don't like being woken up in the middle of the night?), but I managed to calm her down fast.  Potty training is also in beginning stages.  Bert likes to make use of his outdoor time by playing - not pooping.  I am very grateful we have wood floors!  
It's a little hard having our family dynamic changed - before, we focused any and all attention on Lucy.  Now, one of us has to be constantly watching Bert as well, because he's fond of chewing and defecating.  Not unlike an infant, only he can wander off into a corner and do it secretly.  I know, though, that we chose the right dog for Lucy, and Bert will fit right in :)
   Mah puppeh!