Friday, August 16, 2013

'What does Lucia like?'


A few times now a neighborhood friend and her tween twin daughters have babysat for Lu.  They watched her one night while we attended a wedding shower and they've watched Lu two times now while I've run some errands during the week.  They are great!  Yaisa and her two girls, Maya and Lise are caring, enthusiastic, fun, and very trusting.  I give them the basics- how to feed her, carry her, get her ready for bed if it's nighttime, and a few other special things.
This afternoon they watched Lubird for a couple hours and I visited for a little when I picked her up.    Yaisa asked what Lu's therapists did with her, and she also asked the simple question, "what does Lucia like?"   She genuinely wanted to know how they could do more.  When I've been asked this question before I've somewhat hesitated.  It's not a "Oh she likes princesses, or she likes to eat teddy graham's or watch cartoons". I realized today that I hesitate because it's so simple- our Lubird simply enjoys the simple things in life.  Since she isn't able to see or hear very well, details of princesses or cartoons don't mean too much to Lu.  This is what our bird likes that I shared.  She likes to be massaged.  She likes to sit up on your lap and be a part of things.  She likes music and lights and the outdoors.  She likes to take baths or swim.  She likes to get kisses from dogs.  She likes to have her forehead and toes tickled.  She likes to be given her bottle.  She likes when I clap her hands together. She simply likes to be loved.  Our bird,  our beautiful little Lubird, is here to give love and be loved.  Yes, we search for more things that she may love- fireworks on 4th of July - not so much so far, swinging- not so much right now either, food-not really other than her bottle...  We'll continue to look for what our Lucia may like, and right now we know she likes to be cared for, with music and lights around, bathed, massaged, fed her bottle and loved! Quite a life our lady of leisure has, and I can't think of anyone, even close, that I would rather take care of like this!
We love you our Lu and we will never stop doing the simple things with you, which simply put all goes back to being loved.
Thank you Yaisa, Maya and Lise for being so great with our Lu! And Scout, we know she does and will always love you!


Thursday, August 1, 2013

She Sings!


It's funny how awkward a silent waiting room full of people can feel.  When there are kids present, they often seem to 'break the silence' because they just don't care about being quiet or 'appropriate', they just act like themselves and it can be great!  When they are special kids like Lu, you just never when you will get some Lu noises or Lubird songs.  Lucia is still just the wee age of 2 but already her communication sounds different than the average baby,toddler.  I had to get a routine check-up on my blood last week and as usual the waiting room was dead quiet.  There was a woman in her 90's there with her son and grandson and about four other adults, in a small lab waiting room.   The sweet old lady saw lady Lu and baby Scout and came over to admire their innocence and sweet baby-ness.  She could see that Lubird was special and she didn't skip a beat to ask their age, and compliment them both on their sweetness and beauty.  Then shortly after, Lu started up her songs, and she wanted everyone to hear.  Her long 'aaaaaaaaawwwwaaaaahhh' 'urrrrrrrrrrrraaaaa' and other very sophisticated vowels sounds that can carry on for a good 15-30 seconds before she sneaks a breath and on and on and on.   You could hear a pin drop when we walked in, but shortly after having Lubird arrive...it would have needed to be exploding pins!  She sang and sang and sang.   I could tell that we were being observed.  One girl, close to my age, was looking over at us with a confused look.   I looked back and proudly smiled.  And Lubird sang on.  I sat next to my sleeping Scout, and my singing Lubird in their stroller and I smiled and laughed to myself.  I laughed to myself so much that tears were welling up in my eyes.  I find my Lu so funny, so beautiful, so different or possibly inappropriate that it makes it SO appropriate.  She lightens up the room, she breaks the ice, she shares her light-she SINGS and she SINGS so the whole world can hear.  You never know when she is going to strike up a cord and you really don't have any warning....be it church or the post office or possibly a funeral....we can be sure that our bird will sing when she feels in her heart that it is the right time, and there is no volume control..  We may hear a sudden loud inhale and off she goes!
It would have been nice if the girl looked over and smiled, or even laughed with me.  Lubird wasn't interrupting anyone or ruining anything, she was just being herself.  I know it can feel a bit awkward to hear different sounds or see different people, but who cares.  Smile, laugh, maybe even sing along too!
I thought of one of my favorite episodes of  'Curb your Enthusiasm'.  Larry hires a chef for his new restaurant and he has Tourettes Syndrome.  On their opening night the chef uncontrollably has a fit and Larry does his thing...   Oh Larry does get himself in a mess almost all of the time, but he tries and sometimes its awesome.  Here is the clip..warning...lots of profanity!
http://youtu.be/nFnLpXzkw4Y
So in between therapies to continue to work on sitting, and bearing weight to stand, and working on holding objects in her sweet hands, and learning to swallow baby purees, our Lu sings.  She has even belted out sometimes to calm her crying sister Scout!  
Love our Lu and her sweet songs too. She sings and it melts our hearts!
Sweet bird singing to her lady frieda