Five ambien-induced hours of sleep again. Hours awake at night spent researching the likes of “what happens to a child with a major gap in speech therapy” to “likelihood of a second gene mutation in another child.”
I run. I walk in the beach. I’m exhausted when I go to bed but still… my mind saves these topics for when I lie down. All the details are front and center only at night. My subconscious works through things in such mysterious and annoying ways.
I’m so frustrated she doesn’t have therapy that I cannot see straight. After New York where it took one week… I’m flabbergasted. She hasn’t said a new word or sound in three months. To those of you whose children don’t have hearing loss- we count every new sound as a major triumph. Every new word is a party. When younger children say “bye” or “shoe”…. I feel like part of me is crumbling. She’s walking… She’s smiling. There’s a lot to be thankful for.
But when you are your child’s advocate, and your advocating gets you no where fast… what do you do? Write your congressman? Senators? I have no clue. I’m really asking though so send me any ideas.
I’m fighting for her on email and voicemails. It doesn’t feel like enough. What if I didn’t annoy these people so much- how much longer would it take then?
Bug is stirring. Off to start another day…