Spinal Muscular Atrophy is a horrible disease.
It's hard to not focus on the life challenges and struggles that SMA causes. The disease can be all consuming, occupying close to 100% of our time and energy (both physically and mentally).
But what we sometimes forget to focus on, are all of the MANY things that Ella CAN do. She is an incredibly bright, sensitive and caring little girl.
So over the past couple days, Michael and I have been putting together a list. A list of some of the things that Ella can do. It's a good reminder for us (and others as well) that while she may be limited in some areas of her life, she excels in many others.
We could have gone on and on forever with our list, as there are SO many things and they were so very easy to come up with.
So for now (at almost 22 months old), here are a *few* things that Ella CAN do (in no particular order)...
- counts to 9...although she skips 7 and 8 :)
- recognizes and says most colors
- says 4-5 word sentences
- says "bless you" when someone sneezes (or coughs)
- makes people laugh
- lights up a room with her smile
- laughs when someone "toots" or burps ;)
- throws a *fake* tantrum to get our attention
- says "help, please" when she needs assistance
- drives a 311 lb. power wheelchair
- sings "Old MacDonald Had a Farm"
- makes "tooting" sounds with her mouth and then says, "eeeeeewww!"
- has pretty much any medical exam/procedure done with a smile on her face
- says "please" and "thank you" without being prompted
- gives hugs and kisses
- shows compassion for others
- sits contently for long stretches of time during her feeds
- compensates for her disease
- loves to jam in the car to B96 and KISS FM
- uses a plastic fork to eat
- stops herself from crying when we ask her to
- figures out ways to play
- sings along with videos
- dances her "Ella dance"
- plays with an iPod, iPad and Kindle
- waits patiently when we are getting ready to leave...often times while lying on the floor where we've gotten her ready
- tells Ava and Henry to stop crying when they are throwing a fit
- understands that doctors, nurses and therapists are there to help her
- enjoys seeing pictures and videos of herself and others
- loves to shake her head from side to side to make herself dizzy and make funny noises
- pretends to talk on the phone
- trusts her parents when we say we'll be right back to be with her
- pretends to read
- loves magazines
- plays catch with a balloon
- likes to clean up where she has eaten
- throws a fit as an almost 2-year-old is expected to
- folds her hands in prayer
- says "love you"
And the list could go on and on. We'll never stop marveling at all of the wonderfully incredible things that our Squishy can do :)
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| There's that smile :) |
One of Ella's "readings"...
