I hesitate to write this post as it may seem crazy, odd, or morbid but I have to express words that have come out of Lilliana's mouth today...
-While cuddling on the couch she said "your the best mommy in the world" and as hugging her tight I said "I'm never letting you go", without a beat she said "well you will have to when I go to heaven"... I quickly reminded her I will be in heaven first and she said "no, I'm going in two weeks"
- while getting ready for bed she started singing a song (to the little moose in the bathroom at the cabin) a song about how she loves her little moose and wonders who will take care of her when she goes up there (and points up)
- today she told me "I choose you to be my mommy because of your smile"
- during bedtime stories she got a little sad and said "will I get to bring ni ni (her little blanket from birth that goes everywhere with her) with me to heaven?" I assured her that whatever she wants in heaven she will get and it will be a million times better than anything on earth!
Lilliana has always said very amazing things at times from the day she could talk :) and I have rarely shared them as it has been my special "gifts" from her.
Today's comments from her came out on a day of frustration and worry. We have been having a very hard time getting our current doctors and hospital to jump on any possible treatments, causes, or medications (besides diuretics) and we are feeling a urge to get some answers, results, solid prof that there is truly nothing that can be done.
I know God has an amazing plan and Lilliana's story has many more chapters to be written but I am worried.... More than I think I have ever been.
We are sending all of Lilli's currents test results to Boston and there is the potential of a mommy/Lilliana road trip in the near future.
I appreciate any prayers for Lilliana to prove yet another miracle to this world and for me to have the strength to share it.
