The caucuses are in full swing.... Kevin is there... his resolutions about funding waiver programs firmly in hand. He has become such a champion for Grace, and for other families. I am constantly in awe of his devotion to families... and as for Grace... He is so proud of her and wants everything possible for her.
Lately we've been on another emotional rollercoaster. There was a possibility that Grace could be enrolled in a clinical trial - this will not be the case. Her taking the drug Felbatol actually ended up being the last straw... the drug company doing the study did not want to have her on Felbatol due to potential side effects with the study drug. Kevin and I had begun having conversations about whether or not we would take her off Felbatol - to not have to make that decision was a relief. However there was a sadness and anger in having an opportunity to do all that we can for Grace being snatched away. Kevin and I said when all this began that we would do what we could....anything we could..... always -
Currently Grace is snug on Hoover's pad with him.... he is ignoring her. She'll be 2 soon. As I think about this its impossible for me to imagine. This beautiful girl... with golden curls...who hasn't said a word.... is wise, tough, gentle, and her own person. Serving her as her mother has turned out to be so ...... I just don't know if I have the words. Perhaps what I mean .... is that being Grace's mom is a privelege... a defining role...more than I could ever have imagined. I want her so badly to know how much I love her ---
She's doing great things.... hanging out on her hands and knees... rocking like she could crawl soon.... mad when she can't get where she wants..... rolling about the house to get where she wants... she just is not giving up.
It's time for me to put her in her pajamas... get her meds... snuggle up for our goodnight snuggle and sing her our goodnight song.
Goodnight Gracie. Goodnight Gracie. Goodnight Gracie. Your daddy and I love you.
Sleep well Gracie. Sleep well Gracie. Sleep well Gracie. Morning will be here soon.
It's simple... but I think she knows it.
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