Destiny

My oldest granddaughter has 18-p syndrome.  It means she's missing the short arm of her 18th chromosome.

It also means she was born tiny.  Under 5 lbs, and with a hole in her heart.  The doctor wanted to wait until she was a year old for surgery but we couldn't.  It was taking all her energy just to live, which meant she wasn't doing anything else - not growing, not learning.  At 9 months she had open-heart surgery.  I was so scared.  Seeing that tiny little baby with all those tubes and wires running in and out of her... That was hard.

Then eye surgery 2 years ago to correct her drooping eyelids.  With another surgery coming up late this year or early next year.

And developmental delays.  She doesn't speak as well as her younger sister.  But she does speak, for which we are grateful.  She can also be extremely fearful - definately not one to run headlong into new things.  Except for swimming.  She has absolutely no fear there.  We tried to teach her that she really can't swim.  Took the floaties off and let her go under.  She came up laughing "I'm schwimming, I'm schwimming"  I told her "No baby, you're drowning".  Didn't phase her one bit so she starts swim lessons on Monday.  :)

Now she's developed alopecia areata.  Which means her immune system is attacking her hair follicles, causing her hair to fall out.    She had such beautiful thick curly hair.  Now it's thin, and she's lost about half of it.  It doesn't matter now but I worry about what it means for her in the future.  We women are so caught up in our hair. 

She is the light of my life.  I love her sister too but I can't help it - Destiny is definately my favorite.  I get so angry sometimes that she's had to go through so much already and she's only 3.  She is such a sweet little girl.  And I worry about what future obstacles she'll have to face.  She has to have regular specialist visits to check for new developments.  This syndrome can cause all kinds of problems. 

I should be grateful though.  I know that.  So many children with this syndrome are stillborn or don't survive their first year.  Many can never sit up by themselves or walk or eat without a feeding tube.  And I am grateful that she's able to do all those things.  But I am still angry.  And I worry about her future. 

And I worry that the first time someone calls her retarded or funny-looking or something I am going to kick some major ass and end up in jail!  Really.  I do worry about that.  Not sure how well I will handle that.  I know it's ridiculous - all kids get made fun of for something sometime during their life.  But I am overprotective.  Can we say "Cheerleader Mom"?  lol

This pic is of her sliding down her new slide.  Another one of her favorite things.  She can slide for hours!  :)