Ramona Update
It’s been 10 weeks since we got back from CA. Since then Ramona has had more bad days than good ones. Only weeks before we left she was doing so-so. My friend V said it was a once-in-a-lifetime, when everyone was well. I think she could be right, which is a little depressing, but I’m so very thankful that we had that time.
After the stomach bug Mony got in October she hasn’t returned to her former self. She’s been experiencing a lot of pain in her hip. My sister C keeps telling me to cut her leg off. I actually wish that was an option some days.
(Switching the whine off)
Yesterday at the hospital, while awaiting an appointment to have her Baclofen pump increase, we walked along the corridors listening to Mindy Gledhill’s Anchor album on my iPhone and talked about the 6 weeks she was in the Newborn ICU. I showed her where I was sitting on my 23rd birthday talking on the phone with my dad. How he, and everyone else, forgot my birthday that year even though they all called to check on her. She loved that. Rude.
I enjoy it, so much, when I get a chance to be with her, just her. Not her brother or her sister or her pain. Just her. I know she is smart and funny and so peaceful. I feel like there is SO much I’m missing though. Like I only get to see the top layer and the bottom layer. So much is hidden in the middle.
I know one day I’ll know the middle too.
We all will.
