Wednesday, March 10, 2010

Happy Birthday to my sweetly non compliant girl

It has been a long while since I updated Sara's story of being Sara's mom. After all the buzz over Sara's medical coverage, and our fears that she would be left high and dry...that just simply has not happened. Her very expensive food always comes from somewhere, usually from other EOS parents that have extra..or kind friends and pharmacists with samples and know how. We are allowing her to eat regular food too. The struggle to comply with a totally liquid, tube fed diet just seems like a very extreme sentence for her, especially when we know so many kids with MUCH MUCH more severe symptoms that still manage to eat by mouth. She is very happy about this. We are happy for her. There has been no need for raising medical funds, because she has been doing fantastic. I make the mistake of focusing so much on our struggles, so this time I am happy to report she is growing and learning, and entertaining..
She started kindergarten this year, and we couldnt be happier with her teacher and parapro. They adore her, and she has really blossomed into her own. She has certain activities that she does not care for...physical therapy, occupational therapy..and Math. She refuses to do certain tasks with a kind smile, and we refer to her as sweetly non compliant.
She has learned to write her own name quite well,

and is beginning to write sentences. She can read tons of words, albeit mostly ones that are to her liking such as, pizza and yellow. She is very independant, helping herself to banana flavored popsicles, and toasting bread when she wants it. She can be a little bossy to her brothers, guests, and mostly to our dog, Ashlee.
Today she turns six years old, and I had in mind a long winded tribute to good friend Kelly sent me pictures from that first day in the hospital for me to incorporate.

But as I started looking at them, I was just reminded of what a great day that was with my best girlfriends, and how for everything we have been through we still have the same amazing people in our lives, touching Sara with laughter and love and lighthearted spirits.

Lots of ups and downs for sure, but a long winded tribute doesnt really suit my sassy little firecracker. She doesnt have time for that, she is a happy, busy girl. She does love her some yellow markers, yellow clothes, yellow shoes, yellow notebooks, yellow people and pictures though...

"Happy Birthday to YOU Sara."


  1. Happy Birthday Sara!! You have come such a long way and you have a wonderful family by your side!!
    Crystal and Eva

  2. I have chills. Your a blessing to me and so many!