not enough time…
Here we are….
Our story was written in the stars….
Cheers to finally starting a blog. I have thought about this for a while… but wasn’t sure what to talk about or speak of. But, now, Im going to speak of my story || my life || + what is going on. This will be my digital journal I suppose. Currently, Im sitting at my beautiful thrifted antique dining table. It’s hot outside. And my coffee is cold. My husband is laying in bed wiggling his right toes. Ive been trying to savor every moment, every movement, + every emotion.
The truth is, im feeling like there isn’t enough time. My husband was involved in a tragic + traumatic accident this past October. He was just finishing up a delivery on his bicycle in San Francisco + was struck by a car. He suffered a traumatic brain injury, a stroke, major broken bones in his face + spent much time in the hospital + in rehab. Things were looking up once he came home but two months later, right after Valentines Day I noticed a change. He was having difficulty with speech + talking. I knew something was wrong so he went back to the ER per Neurologies recommendation.
I was afraid he was suffering more strokes. I wasn’t prepared for what the Neurologist had to say. They believed that the swelling in Brians brain, that was causing the speech difficulties, was due to a progression of a disease he was diagnosed with as a child. When Brian was 10 him and his younger brother were diagnosed with Addidson’s Disease or ALD Adrenoleukodystrophy. His younger bother Kevin would pass just months after the diagnosis. Brian lived much of his adult life not even believing he had this disease. He stopped taking medications + just “lived fast” ( thats a tattoo on his fingers).
Apparently ALD can be triggered after a traumatic experience, and apparently it was triggered by the accident. Addisons disease is progressive + the neurologists believe that the progression will happen over weeks to months. This conversation happened at the end of Feb 2021 + now its June 2nd. We have already been blessed with months. I want more time though.
A little over a week ago I was making dinner and Brian had a seizure. I called 911 + he had one more seizure at the ER. He spent a few days there. This is believed to have been a sign that his disease is progressing. I want more time though.
We just got married. Tomorrow will be our two month anniversary. And it may be silly to think of anniversaries as months but deep down I don’t know if we will have a one year or a two year or even a 15 year anniversary. I can hope. I can pray for a miracle to happen. We. just. don’t. know. This disease is RARE + unknown. We don’t know exactly what progression will look like but we are talking to palliative care + the next step seems to be getting in contact with hospice… events I didn’t or couldn’t even imagine happening right now.
progression… will eventually lead to death. And I suppose we are all dying, right? Everything is unknown. Nothing is guaranteed. But right now, as I sit in OUR home, I want more time…..
more backstory to come.
XO, Ray
