3 years ago today, we were pacing the floors at Central Baptist.  Right now, it is 10:16 am.  We are very lucky to have the ability to document our lives through the eyes of a camera… and those of our friends.  This is the image that was taken at this exact moment 3 years ago:

This amazing moment in my life in unexplainable.  At the very same moment that I was first able to touch my perfect princess, I was being told by the Head NICU doctor that he was relatively sure she had VATER Syndrome.  The kind of things that swirl through your head when you hear that your child has a “syndrome”…. well sadly enough, many of you who are reading DO know that feeling.  Years later its just a part of life, like everyone said it eventually would be.  We deal with the issues one by one, and tubes, catheters, syringes, medications, testing, surgeries, etc are all just a part of our life.  “They” said it would get easier, and in ways it has, but mostly it is just “different”.  Dealing with each year has its new challenges.  If I were to talk to a new parent of a VACTERL kid now… I would say… “Things will get different someday”.  Because that is the truth.

Today I am so privileged, to be worried about sending out invitations, and which wrapping paper to choose.  Some parents don’t ever get those choices.  Some parents, today, are taking balloons to a headstone, and while I am hooking up feeding tubes, our family is blessed.

Kyleigh ironically enough, chose her “dress” from her closet this morning to wear today.  It was the SAME dress that she wore to her birthday party last year.  (Yes… the kid still easily fits in it…. sigh.)  We had not SAID anything to her about her birthday yet but she just KNEW she wanted THAT dress.  I know that she has some higher level of knowledge.  I just hope she keeps listening to that intuition as she grows up.  (as she grows up………………………………………………..  AS SHE GROWS UP!!!!!!!!)  Why is that a big statement that needs emphasis?  Well, before now, everyone glimpse of the future has been tinged with uncertainty.  As of today, Kyleigh is celebrating her birthday in the BEST health she ever has been in.  She is happier and more full of life than ever before.  She is opinionated, stubborn, smart, defiant, sweet, beautiful … amazing.

So… Happy Birthday sweet princess Kyleigh!  We love you!

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