Dancing in the Rain
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A Trisomy 18 Journey

Life is not about waiting for the storm to pass. It's about learning to dance in the rain. -- Vivian Greene

Wednesday, January 25, 2012

Do Over


Julia 1/25/2011

I would really like a do over.  All of Julia's 382 days. The good and the hard. The days spent feeding and holding her.  The nights awake with her. Dressing her. Singing to her. Taking pictures of her. Watching Sydney and Isaac with her. Celebrating birthdays every month with her.  Making memories with her.

It's not that I would want to make a lot of changes. I just want the time back.  I would also like to go back to the time of her birth and tell myself a few things...

1. Julia will surprise you.
2. Doctors cannot predict the future.
3. 5-10% of trisomy 18 babies make it to one year, and Julia could be one of them. See #1 and 2.
4. Julia can and will eat with a bottle.
5. The colic will not last long.
6. Julia's smile will be the most beautiful thing you have ever seen.
7. Leave the cameras out and use them. (We did pretty well with this one!)
8. You are not alone.  There is a whole t18 community out there.
9. Don't be afraid to hope.
10. You are her mom. Trust your instincts.
11. Celebrate every single day.
12. Julia's life will be beautiful.

I have often wondered if I would have wanted to know exactly how long Julia would have with us. It would have been very helpful and comforting in the beginning.  Those days and weeks we spent thinking we could lose her any day were so hard. I am so thankful that for most of Julia's time with us, we were not thinking that.  We were so used to her being with us and beating the odds that we thought that would contine for a long while.  That kind of thinking - the hopeful kind - allowed us to enjoy our life with her. I would not change that.

Then I wonder if I would want a do over of her last week.  Right now, the answer would be yes.  I do not know if there is anything I could have done to change things that week, but I would like to try.  A friend recently said to me that it was just her time to go.  I want to believe that.  I have to.  But I would still like a do over.

Love you forever, Julia.

2 comments:

L said...

Great post - I completely agree with you on everything! I wouldn't want to bring Lilly back from heaven - but I would love to do her whole life with us over again ...

Jodie said...

Seeing you all live in hope and with joy is the most inspiring thing I have ever witnessed. Just one of the many things about Julia's beautiful life that has forever changed me.

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