....how fabulous my daughter is
...the high expectations we have for her
...how my heart stops anytime Hailey has breathing issues or her coloring is off, I will always worry about her heart (Eventhough I have been assured that her heart is fine.)
...how happy I am about this: in 1929 the life expectancy for a person with Down syndrome was 9, 1983 it was 25 years old, today that life expectancy is 60 years old.
...how Hailey can make even the crankiest people smile
...how that one extra chromosome seems to affect almost every part of her body (both good and bad)
...how some people will never care that the r-word hurts others even though they aren't "aiming" it at a person with a developmental disability
But I can't. I'm tired. I'm exhausted.
In our day-to-day life, we do not discuss Down syndrome much. We discuss our days. We talk about the weather. Sports. Homework. Therapy. Meals. Family. Friends. You see, Down syndrome is a part of our life, but it's just that....only a part. It is a part of Hailey, but it does not define Hailey. It just is. It is there. It will always be there. Just like Ian is left-handed. Just like Brayden has beautiful blue eyes. Hailey has Down syndrome. We've grieved over it. We learned about it. We dealt with it. We love Hailey for who she is...extra chromosome and all...the good and the bad. It doesn't paralyze us. It doesn't make us feel embarrassed. We don't hide from society (quite the opposite...if you've ever seen Hailey out and about...she will make sure you pay attention to her).
We have similar family struggles. Sassy 9 year olds...5 year olds that know everything...a toddler who does what she wants, when she wants. Juggling schedules and doing homework. We have a few frustrations that others don't. I have shed plenty of tears over Hailey not reaching a milestone or us working so hard to get there, but her not getting it. I've done it over holding her head up...sitting unsupported...crawling...and most recently over walking. It's not easy to watch your child work for 7 months on something and still be so far from achieving her goal.
But in looking at the big picture. It's little stuff. After your daughter has had open heart surgery and given a second chance at living, it's all little stuff. It is just a part of life....let's live it!
|Pouting because mom said "no".|
|Dancing to nursery rhymes on the iPad.|