Tuesday, May 19, 2020

We will all be back together again

Since Brandon has been isolated beginning in March he has asked almost everyday when can he work again, when can he go to KOOP radio again, when can he see all his friends again, when can he go out to eat again, when will his band play again.  I have to answer either I don't know or as soon as it is safe.  He doesn't love those answers and near the beginning was really having a hard time not doing those things he loves in his good life.  I was getting really worried about him because he was sleeping very long hours, stopped eating solid foods and he lost 6 pounds.  Luckily some great friends have contacted him and have done Facetime gigs for him.  Special thanks to Bill Paige and James Pennebaker and Walter Talley who posts a daily Beatles song.  We are on day 66.  I came into his room this week and the daily post was up on his computer.  He also has many friends sending him Beatle posts.  We managed to keep two of Brandon's support - Mary Buchanan his job coach and Phil Montford the fearless Eddie Ray Band leader and who runs Tenacious Tuesdays.  I have been filling in each night.  On occasion we have Steve Klopp come and join Phil a few mornings at the house.  Nathan (Brandon's roommate) has been at the house each day and plays the drums when he is around with Phil and Brandon.  The bright spot for Brandon and for me, is listening to some great music that we probably would never hear if it wasn't for our new reality.  We really appreciate this and try to support our musician friends. 

The new normal for us looks familiar.  I think I have spent 27 years not in isolation like we are now, but very conscious about those that are sick around Brandon, the latest bug on the street and keeping Brandon free of major illnesses. I wont take him out when he looks like he is getting ill, has a seizure, has a bad cough or running a fever.  I would rather stay home and hope it passes without a trip to the ER.  We have a routine of my magic potion that everyone has to take the minute there is a possible illness.  So our new normal for now seems pretty familiar to us.  It is why I now have a 2 acre garden.  Lots of time at home during long periods of illness, surgery, recovery.  It has gotten better over the years but there are times it is the same and it is always on my mind.  I have friends (and you know who you are) that have taken amazing care of their young adults with disabilities who have way outlived predictions by physicians over the years.  It is because those moms do the same thing I do to make sure they jump on any possible illness.  I am amazed at what they do daily. 

For Brandon life right now is not perfect but it is better than when we began.  Honestly, unless the cases of COVID 19 go to 0 or there is a vaccine it is unlikely things will change too much for Brandon.  In the last few weeks Brandon began announcing to everyone that "we will be back together again".  That is a much better way to think about this.  Because we will, it may not be exactly the same, but we will. 

Next week we head back to MD Anderson for Brandon's 1 year cancer check.  This one is the big check because they will have a scan of his entire trunk (chest, stomach, lungs, heart, etc) with contrast which will require sedation.  I was very nervous about Brandon going to any physicians or hospitals right now, but I feel like we need to get this checked given his weight loss and new eating pattern.  I am pretty certain those are related to a little depression, but better safe than sorry.  MD Anderson is very strict on coronavirus and will test both of us as we enter the facility.  There are no guests allowed in the facility, but they will allow me to accompany him.  They have machines all the floor that kill germs and have been there for years.  So of all the hospitals this one is pretty safe.  However, we will be geared up and I will have a ton of hand sanitizers in my purse. 

A few other changes in the plans for this year.  I cancelled two trips for Tony and me - one to Mexico and one to San Francisco.  I canceled a trip to Florida with Brandon for the Beatles on the Beach Festival.  Lastly, we just received notice that the International Beatles Festival/Week is cancelled in August in Liverpool.  Going to the trip was Brandon, me, Mary, Kurt Ruzika and Rush Evans (KOOP Radio Off the Beatle Path).  We somehow managed to add a short excursion to Paris during this time as well.  But unfortunately we had to cancel for this year.  Brandon had been very nervous about cancelling this trip.  We all had a ZOOM call this week and decided we will plan for 2021 hoping that there is a vaccine or the illness is over by then.  So 2021 International Beatles Week here we come. Now to change the reservations. 

Brandon also has changes in his living arrangements.  Nathan and his brother have found an apartment and will be moving out.  The apartments are here in Dripping Springs and will have a few other friends there as well.  So I feel great about it for Nathan and his brother and for their friends.  Moving in will be another Brandon (really we will have two Brandon's) with his mom and brother.  Brandon is very happy we found the perfect match.  We are busy purging stuff we don't really need, cleaning and making room for them.  Brandon has decided to move rooms.  Lots of work to get ready.  Lots of changes, all while trying to stay safe. 

During this time of working at home I have taken the opportunity to catch up on a ton of paperwork, cleaning and purging at my house and trying to make life a little easier around here.  I managed to finally get the taxes off for me, Brandon and my Aunt.  I am about to finish reporting all of Brandon's earnings (yes I am really late).  I am trying to take a little Leah time outside with gardening those 2 acres and walking which seems to help with my stress.  When Brandon is stressed I get get stressed.  While trying to do some clean up at his house last week I walked a little too fast across the living room, tripped on a large chair, fell and landed on the arm of another chair.  I landed on my teeth and gums.  It was a mess.  Luckily I was able to get in with my dentist and I didn't break a tooth and the gum was already healing.  I am still a little sore but probably more embarrassed that it even happened at all.  The dentist said he only sees these kind of things with his female patients.  Hmmmmm. 

A little controversial section here.  I have been watching so many of you express your concerns for your rights to not wear a mask, to go out and socialize in larger than recommended groups, the list goes on.  I also see many of you arguing the opposite.  I also feel badly for those of you without jobs, without income, without health insurance all from COVID 19 and understand the need to get back to some sense of normal.   As we begin to re-open I am more fearful now than I was early in March because it is likely more people will not protect themselves or others hoping to get back to the old normal.  I am conflicted because I want to go out to hear music, I want to go to concerts, I want to eat in a restaurant, I want to hang out with my friends, I want to travel.  Brandon wants to work at UT and Longhorn, he wants to do the radio show each week, he wants to play in the band and go to gigs and he wants to see his friends.  But neither of us wants Brandon to end up on a breathing machine fighting for his life.  This is almost certain where he will land if he catches COVID 19 given his lungs.  So until there is a safe way for him and I to stay safe, the only thing I ask of you is to remember Brandon's desire to one day "we will be back together again".  It will only happen if we are all smart about those few things that keep us all healthy. This is not forever, this is just for now in this moment in time and this is for us all to be start being smart about staying well.  The goal is to hold off this illness as long as we can as that curve starts to head down or until one of those great vaccines works.  Be smart, stay safe, wash your hand obsessively, stay home if you are sick and and know there are people possibly standing right next to you who are vulnerable.  If we all do our part - and you have to decide what that is based on the best information we have, we will all be back together again.  No judgement, just stay aware.  In the meantime we will be doing what we have been doing for 27 years years.  Trying to keep Brandon as safe as possible and hoping to avoid this illness.  We are all in this together - we can let this divide us or we can join together and beat this thing.  Brandon and I are up for the fight. 

Be safe.  We care about you all. 
Later
Leah
Brandon's Beatles Mask

4 comments:

Patty & Joe Geisinger said...

Amen Sister! Yes, quarantine is a routine I know so very well. It has been a bit hard, but been doing it for 29 years, so I have my flowers and small garden. I read, we listen to lots of music and have our daily Price is Right. Jess has been on O2 since December. Other issues continue to crop up and telemedicine has become quite normal now. Tell Brandon that Jessica feels the same, but she is also staying safe at home!

Loved all you said! Good luck next week at TX Childrens! Praying for the best outcome!

Jannet Bacala said...

We had much advantages with aronia!

Unknown said...

We will check it out.

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