I am truly blessed to have a wonderful husband and 4 beautiful children. Our story is not unlike many others, but it is ours to cherish. This is my outlet (my therapy, if you will) and my way to keep those who are interested up-to-date on our journey, especially that of our son Luke who has Down syndrome. I will make it a priority to spread awareness about Down syndrome through this blog and other outlets.


Tuesday, November 16, 2010

Three words


A year ago around this time, Luke was in the hospital with severe enterocolitis...his third hospital stay at just 2 months of age.  I could easily sum up in three words how we were feeling at that time: despondent, fearful, and exhausted in so many ways.  One year later, I'd say we've made quite a transformation and can replace those words with hopeful, at peace, completely in love.  I'd be lying if I said we didn't still have our moments of sadness or worry for Luke and the struggles he might face, but it's nice that the positive descriptors far outweigh the negative ones now.  When Luke was a newborn, before his little personality had really surfaced, I think it was harder to get past the sadness and worry.  Now that he's our "little Lukey" with the sweetest disposition you could imagine, it's impossible not to look at him and feel blessed beyond words.

A developmental hearing specialist came to evaluate Luke for his hearing aids a couple of weeks ago.  She started her evaluation by asking me how I would describe Luke.  Three words immediately came to my mind:  resilient, sweet (a lame descriptor, but such an appropriate one for him), and curious.  Actually, I could sum him up in one word:  angel.  Since he's been more medically stable, his personality has grown in so many ways.  He loves to explore everything from Ziploc baggies to the parts of our faces to shoe laces.  He has recently developed a bit of separation anxiety if we walk away from him, which is a good sign of cognition.  He watches every move Jackson makes and gives Olivia this glare when she is exhibiting some "diva" behavior!  He giggles uncontrollably when we nuzzle his chin or tickle his belly, and he loves to smile at himself in the mirror.  Again, I don't even need three words to describe him...he simply is our angel!
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And a little bit on Jackson and Olivia...

Jackson in three words:  energetic, rambunctious, strong-willed.  Actually, I guess those would be three good words to describe just about any 3 1/2-year old I know!  I may have talked about this before, but it is interesting how he is so overly loving and affectionate with Luke, yet with Olivia, he can be so antagonizing and assertive.  Somehow he knows that Luke needs just a little bit of extra care and love.  One of the first things we heard just after Luke's diagnosis was what a tremendous impact it would have on his siblings and the people they would become.  I can't wait to see the day when Jackson stands up for his little brother and helps to protect him.  Jackson still loves just about any sport you could think of and has quite a vivid imagination these days.  It's amazing to see what he comes up with when allowed to play with just a few simple household items.  Give him a simple "chip clip" and some tape and he will quickly turn it into some kind of fireman contraption that I can't even explain.  Since Halloween, pretending to be a fireman is his latest interest.  His fireman gear (including boots, hose, and all) is pretty much guaranteed to show up at lease once a day.



Olivia in three words:  busy, busy, busy.  OK, I can easily come up with some better words for her, but she really likes to keep us on our toes with her never ending curiosity about everything around her.  Like Jackson, she has quite the mind of her own and definitely likes to do things on her own terms.  Our poor physical therapist has the hardest time working with her because, as sweet as she is, she refuses to pay attention to what he wants her to do.   Though I know she can do it, she won't walk because I'm sure she realizes that she can just crawl much faster and easier.  When she doesn't want to do something, there's just no way around it.  What worries me about the future is that her insanely precious smile can turn you into a puddle almost instantly!  She now knows the sound of the garage door and that it usually means Daddy's home from work.  As soon as she hears it, she takes off in a mad dash to greet him at the door.  She loves to clap for herself when she does something new and exciting, and she's getting very good at blowing kisses.  Our busy little princess is such fun these days!


So busy that this is how she fell asleep one day!

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