Strong for Life, Or how do you do what you do

I often get told I am one strong woman. I don't see myself as such. Here is my response to that statement.

Strong... Depends on the day :) I have many days I close myself in the bathroom and cry and feel sorry for myself and my life, then put on a happy face and go back to life. I'm in a facebook group for spousal caregivers and it's been a lifesaver. I can say things there I can't elsewhere for fear that people will think I'm a horrible person or say negative things about it when I just need to vent. I can talk about anything, kids,  hubby, me.... Someone there has been there done that thought that. I think half my friends would drop me fast if I said something like how much easier it would have been if he had never woken from the coma 2 1/2 years ago, half of the rest would say things along the lines of how can you think something like that. The remaining 25% would vary between texting, messaging or calling to ask what's up and why are you thinking that, and saying I understand, what can I do to help.
Usually those feelings happen when I have to cancel something I'm looking forward to because he needs me. I married him knowing he had parkinsons (triggered by surgery to repair a brain aneurysm), and a probable stroke during the surgery(he had underlying parkinsons, the brain trauma kicked it into high gear).
I'm an RN and I know better than most what will happen with the parkinsons, that only makes it easier from a clinical standpoint, not as a wife. They discovered the leukemia after we were married. It wouldn't have changed the outcome, I still would have married him.
The kid...she's a lot easier to face, mental illness is a lifelong illness. It could get worse at any time, and I am thankful she's as stable as she is. When she was a teen it was harder emotionally for me. All the what ifs, how will she be able to do anything, live her dreams, what will happen if something happens to me, will she have to live at home forever (I wouldn't mind, but it would mean that she's not likely living her dream of becoming a marine biologist). Its also not a terminal disease and new medications and treatments come out fairly often and are much better at managing the disease. For her there is hope and always will be. She is currently unmedicated by her choice. She's managing it with learned techniques, She's outspoken about mental illness and doesn't hide it, so all her friends and professors know.
It's life, you do what you have to. You fall down, you have a tantrum, you pick yourself up and step back up to the plate for the next inning.
Life goes on.
Life in and of itself is a terminal disease.
Life has a way of going on.
You find the small victories and hold to them tightly, because when there are setbacks you need a victory to remind of the good in life.

Bad vacations can be good to

• The picture in my profile, this one, shows the man I met and fell in love with. We were happy, both of us relatively healthy. We camped, we hiked, had a wonder filled trip to California that was the most stressful, craziest, amazing trip ever. It was the trip to hell that began with  a broken down RV, car rental places not open on a Saturday, finding a hotel to accommodate us and a 36 ft RV, and a $300 two block tow to the shop. It was a trip of family bonding, sitting in lawn chair for 12 hrs while AAA tried to find a big enough tow truck, counting how many times the same police car drove by and never stopped until the tow truck was there. It was a terrifying brief separation as the second tow truck AAA called just to take me and the kids to a hotel, the wrong one, and A $20 tip to convince the hotel driver to take us to the right hotel, meeting a father and son who were there for boat races and invited us to join their team so we wouldn't have to pay entry fees, and discovering a child had lice.

It was a trip to Alcatraz, walking the switchbacks, exploring the buildings, seeing amazing things. A boat trip back with the island in the background of an American flag flapping wildly.


It was a trip to the Winchester mansion, a walking tour narrated.


It was a trip to a park, sitting in a class about dolphins before my kids donned wetsuits to climb in a pool full of dolphins. Watching them grab the dolphins fun to be pulled around the pool.


It was amazing.


It was our last big family trip, and only one.
The man I married can't do those things anymore. He can't walk through a store anymore. He needs a cane to go from bed to bathroom, when he is able, when not he slides out of bed to kneel on the floor and use a urinal.


Despite it all that was the best trip ever, it was before Parkinsons, before leukemia, before bankruptcy, before all that stole our life.




I don't regret any of it. I cherish every bit of those memories and the trip from hell. I have them to remind me of when things were good.
He would like to go on a cruise. I won't be able to take him on one. I want to stand in Times square and kiss him as the ball drops on New Years eve. I want to take him to Yellowstone. Parkinson's won't let us.
I want to take him away, somewhere we can forget disease, doctors, medication.


I took him to the fair.