July...

...and so the story continues on... time marches forward... it is now more than three months since this pandemic and all it has brought stepped into all of our lives. No one likes the current state of the world... things are beginning to open up and the world is moving on- some areas are still having huge numbers of new infection cases and they are trying to figure out how to maintain a safe space for their residents. N Y has made some big strides but it is unclear whether we will actually be able to maintain them... it is unclear whether schools will be able to reopen fully in September.
On a personal level things are still dragging... Ray is making tiny steps forward, but I am very inpatient- I know this is unfair and I try to reign myself in but I find myself want to step away more and more.  The physical distance between us is enormous- he doesn't want to be touched- and the emotion gap is larger yet. We can be sitting together in the same room and yet if feels like I am alone in the world.
I want to be taken care of for a bit, but there's no one to step in and take over the care that I need to be providing to Ray.
I don't know if the world will ever find a normal space again, or whether we will have to create our own routines and accept those as the new normal...
time will tell...

passover, anniversary and easter in the time of covid 19

This year the three - Passsover 4/8, our anniversary 4/10, and Easter 4/12 all fall within the continuing saga of the corona virus pandemic and shelter in place order...
Passover Seder was conducted via Zoom platform- it was fun but totally disorienting not to be able to sit with each other and talk face to face.. the platform allows for only one speaker at a time which n our small circle is really difficult... we talk over each other routinely- it has always been a loud and somewhat crazy seder... this year it was so quiet to sit at home and listen- i wasn't sure that I would even get to be part of the evening as I was scheduled to work at the time it was being held... turns out that because of the virus and several coworkers deciding they could no longer come in to work, that I was scheduled earlier in the day... so I joined albeit without the traditional meal ( I ate strawberries and a banana whilst those around were eating the traditional items.)  the seder wound up being a better experience than I expected...
Our anniversary #26 was a lovely Friday (good friday as it turned out)   I spent the better part of the morning gathering the food items that I wanted to prepare- we had lobster bisque, matlaws clams on the half shell, ray had lasagna, and I had bowtie pasta with spinach and garlic... and we had a lovely chocolate torte for dessert.  the evening was quiet and lovely, but again not what I had hope to do for the anniversary- I wanted to get Ray out of the house and spend some time in a place away from here... oh well...
Easter... so far is not going as I'd like... Ray is sleeping - it's after 11 and I've been up and ready to move since 7... our schedules are just not gelling lately at all... Ursula moved from Bayside to Snithtown and I had hoped to get Ray to take a ride and have a socially distanced visit, but i just received a phone call from Ursula to wish us a happy Easter and to let us know that she intends to drive into Bayside today to give the real estate  agent her house key so that she can begin to show the apartment and perhaps rent it.

my heart is heavy with all this change- I know that I am not the only one who is troubled by all the changes and lack of routine ...

my mantra... let go... and so I shall.

2020... it was supposed to be better than this...

So 2020 dawned as a new decade, one that I was filling with hope and desire to move forward and grow and learn more...
Ray came home on New Year's day and I thought- silly me... that everything was in place and was going to go smoothly... but as with all the best laid plans, it was not meant to be... I struggled to get him the correct home care and ostomy care so we could, together, learn the best way to take care of his new lifelong buddy... It took forever to get that in place, but we finally have products that really seem to be effectively working and leaking MUCH less frequently... Just in time for the PANDEMIC and the social distancing orders and shelter in place orders to begin flowing in... March 15th was Ray's birthday and we had to celebrate via facebook instant messaging with my family... his sister barely even acknowledged his birthday- i know, she's busy...
Work with face covering and gloves... stress beyond words- but I am able to put it into words, and I AM coping so much better than I used to.
I have started a small cottage business with ColorStreet Nails- the opportunity was presented before but the time was right at the end of January and I jumped in with my eyes open and have been working the business and generally enjoying my time meeting the new people that have entered my life as a result- a positive, uplifting group of women.
Ursula has moved from Bayside to Smithtown- I think we have lost her to Ellen- that will be a bit of a challenge for both Ray and I .
My family has found Facebook Messenger and Zoom which have allowed us to communicate as a group at least once each week- it has been awesome for me.
I have rejoined the running world- though again have to build my speed and endurance.   TV has fallen by the wayside.

the dump post...

OMG  what a year... Ray spent most of 2019 in hospital, rehab, and very little of the year actually at home... which changed in the middle of the year from The Anchorage to  The Mews... it was an exhausting year but an immense year for growth and learning. There were a ton of tears, a ton of work, and so much to learn that it created a new person out the back end... I learned that I MUST take care of myself in order to take care of anyone else..I learned that I am stronger than I ever thought possible... I found out how to ask for help, and I have continued to utilize that skill more effectively though I don't really like asking. I learned who my true friends are and who was just using me for the moment- there were MANY who fell into the second group. That, I was surprised to learn.
I cried more tears that I thought was humanly possible... I had more periods of sheer panic than I thought I could outlast.  I made more waves in the hospital than I wanted to but all in the service of being Ray's voice when he could not effectively speak for himself...
I started taking an antidepressant for the first time- it really seems to assist me in dealing with the lows and managing the anxiety that used to almost paralyze me... I have a therapist- the second one- who I trust and share with and I am more open with my family that I have been ever in the past...
I started a job at Lowe's and I truly feel like it is the right fit.. people who care and ask about me, and I feel like they actually want to know.
The new place whee we live is a much more private space and it is unlikely that I will ever recreate some of the joy that was felt in the years following Sandy at the Anchorage- but things there got out of control- some of it my doing- the stealing... and some of it because everyone was in everyone else's business and the boundaries that should have existed were erased.

Reflecting on 2019

So, the new year, 2020 has begun and I’m looking back at 2019 with a stronger heart and a better , clearer head.   2019 was a year of struggle and change.   It is a year of some things I am not proud of  and many things I am very proud of.   Ray struggled mightily in the physical and emotional realms this year.  I was right there alongside him. I learned to navigate some things I didn’t want to navigate.  Our healthcare system is extremely flawed and unfortunately we experienced that first hand over the past ten months.  There are some amazing people that work in our health care system and I have been lucky to find some of them...
two hospitals, two rehabilitation centers...
a new home...
Stronger family connections...
 A good therapist, and for the first time in my life medication to help me with anxiety...
Learning to ask for and accept help have been a difficult transition for me.
I have fallen down, but I am now back on my feet and standing stronger as we head into the next decade.