I just want you to know that "something happening" to Gavin was always my worst fear. I feared that he'd get hurt. I feared that he'd be overlooked. I feared that I wasn't getting his teeth brushed well enough when he'd fight me. I feared that someone would say no when I asked for anything to make Gavin's life easier (luckily I rarely heard no). I feared that his fragile left eye that survived the severe corneal abrasion would tear again. I feared that he'd choke - or aspirate on bath water when he insisted on putting his face in the water. I feared a repeat febrile seizure after last year's seizure that Ed and I both described as the scariest moment of our lives. I feared that we'd die without us having something in place for him - someone to take care of him.
I took some criticism along the way. I was a "helicopter mom." "Overprotective." "Dramatic."
I'm not gonna lie - I'd like to punch those people in the arm right now.
Today I got through Gavin's first three years and lovingly chose photos to display at the services. My sisters helped assemble them on display boards. I struggled through his memory box pulling out tiny hospital bracelets and special keepsakes. Miss Sara took Brian to my wonderful friend Patti's house for a playdate with her twins. A co-worker of Ed's brought dinner. And then Miss Sara and I went to the mall to find me something blue to wear for Gavin's funeral. I was sleepwalking.
Now I'm home - in bed - listening to the pouring rain pound my window. It's like the Heavens are giving me permission to grieve.
And so I do.
"Something happening" to Gavin was always my worst fear.
But I never imagined he'd suddenly die.
For the last five and a half years my identity has been wrapped up in him... in protecting him... in fighting for him... in my fears for his safety and well being and his future. But in the end, I was helpless and useless. There were no letters to write, appeals to begin, strings to pull. I couldn't help him. And he died. My very worst fear.
Tonight I feel like it will rain forever.