Trisomy 18 takes away so much from parents.
But it has given me one thing, and it is this:
Each night, I look at my girl and love her as if each day is her last. It is a wide, wonderful, full-force gush of lurrrve. (It is something I do not experience with Daen.)
C'mon, she's doing well, don't have to be so drama, some say.
Well, I'm afraid that's what life with Trisomy 18 is like. Intense highs and lows. Emotions magnified to their extremities.
12 November 2010
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6 comments:
Isn't this so true. That is what I try to do for Annabel is make each day the best as if there won't be a tomorrow. REality is that there may not be, no drama about it. Praying she does well.
This is the best way I have ever heard it said. You know, one of the things I love most about you is that you have the same love for Vera that I have for Mallorie. I know you "get" me, because you write the things that echo in my heart; you love Vera fully, no reservations, even with fear pushing its way in some days. You focus on today as much as you can. And part of what I love so much about your blog are the updates, full of pictures of Vera's grins. :)
And I agree with Cathy, and I know she makes the time to rock Annabel to sleep, even if she is exhausted, herself. When you are mom to a girl like Vera, Annabel, Mallorie, there are very few moments when you aren't thinking and re-thinking all your choices and decisions. Some "big," like surgeries, and should we go to the hospital for this sickness tonight? And some that "feel" as big, like should we try mashing up some beets to squeeze into her tube, and is she getting enough iron? I don't think it's being dramatic, when it feels like even the smaller decisions feel like they could add up to big changes, or when things seem to keep happening to mind to remind you that life is uncertain. It's not drama; it is your day to day. It's hard to have the moments that keep reminding you to live "as if," but I know it's a great joy, and so worth it all, to have YOUR girl to love this way.
Connie, I so get what you're saying! Thinking of your sweet angel Mallorie still.
Cathy you have been my inspiration!
Hugs and utmost respect to all mothers out there, especially those with special children. I'm touched.
Yin May,
Been awhile but i chance upon your facebook profile and your blog. It must be challenging for both you and Jia Iuan but I am touched by your blog and would like to continue to wish both of you the best. You guys have been strong and amazing as parents! God blessing always.
Daniel (Hall V)-Oranger.
You are making me cry. I'm so touched by feisty Vera.
such a cute girl and great family :)
Have a wonderful and blessed Christmas !
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