Friday, April 27, 2012

Lucy Loves

Some things that can usually, on any given day, produce the shining smile you see above:

- asking her if she wants to brush her teeth
- hearing the title or seeing the cover of one of her favorite stories
- talking to Daddy on the phone
- talking on the phone in general
- her bipap
- hearing how pretty she is
- hearing how smart she is
- hearing how wonderful she is
- hearing how sweet she is - if daddies have an irreplaceable impact on their daughters' self-esteem, Lucy will be running for Miss America and President when she is 18, if not sooner
- the theme song to almost any NickJr show, whether she likes the actual show or not; Pocoyo is a current fav
- stretching and rubbing of her feet after a day in AFOs
- being told it's bath time
- asking her if she wants to go on a walk
- helping her dance with the Gabba gang (go, go, go Lucy!  do the Lucy!)
- me whipping my now long hair at her
- bedtime hugging of her dolly
- having songs sung to her (Old MacDonald and any Ernie tune are at the top of the list)
- me biting off her fingernails and spitting them out (I'm still afraid to use a clippers!)
- the end of her bedtime prayer, when we say "Please help us cure SMA, and please help us... understand... Lucy!"
- asking her if she wants some ice cream, or juice
- biting her cheek and making "nomming" noises while telling her that's what tigers do (new today!)
- asking her if she wants to "fly!" (tossing a SMA kid in the air sure has built up my upper body strength!)
- me shrieking into her chest during dance time
- telling her "no" (we're working on that being less funny and more discipline-like)
- this song
- telling her she made a good outfit choice after she picks one out
- us sniffing her hands and telling her they're stinky
- falling asleep - she closes her eyes and starts smiling and squealing softly
- Sesame Street!
- asking her if she's happy

Things that tend to tick Lucy off, causing tantrums of sometimes epic proportions:

- us not doing something fast enough for her - not grabbing a book immediately when we ask if she wants to read or not turning a page promptly, mostly; or mentioning something she wants and not immediately producing said thing
- nasal suctioning - we don't do deep-nasal suctioning, this is just generally booger removing; guessing she wouldn't be a nose-picker
- being woken up before she wakes up of her own accord (doesn't it annoy everyone?)
- not letting her immediately talk on the phone when she sees me (or hears me) on it; the phone has become a big thing for her lately
- quarterly blood draws - Noni is the best phlebotomist on the face of the earth, and Lucy hates her with a passion
- Daddy brushing her hair - ouch!

So she's a pretty typical toddler.  Besides the machines, being almost completely paralyzed, and not having the ability to talk.  Inside that sweet, beautiful, immobile body - the body kept alive with bipap, cough assist, pulse ox, g-tube - there is a regular toddler.  One who is usually happy, sometimes tired and cranky, sometimes impatient and belligerent.  One who is sassy and sweet and determined, and one who gets frustrated.

One who fights.


Mia said...

Hi lucy's mama ! I'm a regular reader of the gustafson's blog. I sometimes come to read yours and just would like to tell you that you rock !
Keep posting ! Lots of hugs for Lucy from Madagascar (no the movie ! )

SisterB said...
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