Many years ago I had a doctor tell me “When you have a child with such severe mental retardation they have many autistic traits.” This was an answer to my “does she have autism too?” question.Gulp.I saw the word mental retardation on a report of hers once, but I never heard the words come flying …
My Dad always says “disappointment is my only friend”. He always says it with a chuckle of course because my dad always seems to be joking. I am sure it is surprising to know not only did I get my dutch looks and nose from my dad but I also got his ability to laugh …
I always want to sing like Annie “In NYC…. ” I hope you all do the same after reading the title. Oh I love Annie!So I have been back from NYC for a week now and wow I am back to a very busy life. I can’t believe I was able to skip out of …
You ask me what do I crave the most from Lily and I will tell you it is her voice. Words. Humor. Stories. Her take on situations. Her story, her day coming from her lips.I have always said and will continue to say that CDKL5 robbed the most important part of human interaction from her …
So often you hear people say why does God let bad things happen? It is a lifelong question that you will hear a ton of different answers to. Bad stuff happens. Genes get messed up causing a devastating result. Marriages fall apart. People die. People survive accidents but live the rest of their lives dependent …
“Show me someone who has done something worthwhile, and I’ll show you someone who has overcome adversity.” – Lou Holtz I wrote this http://lilyannablu.blogspot.com/2011/01/2010-in-depthmetaphorically-of-course.html (trying to click link this is killing me!) back in January of 2011. I wrote it because I desperately wanted to share what we had been through in our marriage, yet …
2010 you brought me some of my darkest hours. brought deep pain. you brought so much change. change that never would have came without that darkness. so while i will never say i ever liked you, i simply survived you. but i am better because of you. 2011, let’s not be so deep. keep it …
Sometimes when she’s sleeping I can see in my mind’s eye the little girl I thought I had, the one who said good-bye.Sometimes when she’s sleeping, hands folded by her cheek I close my eyes and see before me a child who can speak.Sometimes when she’s sleeping she seems so whole and well I can’t …
Calm Amongst the Chaos 