Truly blessed to have Destiny in my life. I have never met anyone who brings more joy to everyone she meets. The first thing she says to another child is "Do you want to play?" the second is "Will you be my friend?" Even on bad days this is what she says. A trait that is in her mother too, even when she feels bad, she laughs and hugs a lot. With the medication and the many storms Destiny's tiny brain endures daily, her spirit endures. I pray the meds that all doctors recommend for Dravet Syndrome are approved by Colorado soon and I thank everyone who make it possible for Destiny to get the meds she needs now.
She is a joy to be around even on her bad days, thank you for helping her have more good days so she can enjoy life, learn and grow as much as possible. Now I sit with her while she is crying for her lost replacement bunny blanket and rainbow bunny. Tears and clogged nose. So cute, so sincere in her distress. Soon she will be asleep. The doctor gave Tammy samples of one of the new drugs until we can buy more. It is already helping her. A dramatic change in two days. Amazing.
I held the tissue for her to blow her nose and now she is sleeping with her cheek against my side. A warm spot in my life. A relief she can sleep better at nite.
Fewer seizures and longer uninterrupted sleep. I can't wait to see what the combination of the two new drugs will do for her, give her wings back and blow away the clouds in her brain. Clear blue sky, a slight breeze to help her along, perfect flying weather. I pray.
Buck, "The God Father"
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