Tags
a future for bo, ambrose, canada, fundraising, gangliosidosis, gm1
My days are filled with laughter. I’m busy playing with my boys, feeding them , caring for them; cooking, cleaning, organizing, working.
My days are filled with sound and light. If I’m thinking about Ambrose’s condition at all, I’m tackling problems. Calling doctors, making appointments, writing letters, researching, learning.
You know what they say though, ” the difference is night and day”.
The boys go to bed well. We have a happy routine and bedtime is a lovely time of songs and stories.
Around 630 when I close the door of Lex’s room, I take a quick listen to make sure Bo is really asleep. The house is shut down the lights are dimmed and everything’s quiet. It’s that moment that the sadness and loneliness washes over me. This used to be my favourite time; my reprieve, time to relax, pamper myself and focus on something completely frivolous. These days though I’m barely able to focus on anything but the darkness and the quietness and the sadness that’s to come.