New Year, New Memories

20160201_11235420160201_151009A goal (not resolution) I had for the new year was to make more memories with my son, Robby.  To that end Robby and I planned a visit to Knott’s Berry Farm with Sabrina, one of his nurses.  It was cold and windy, but none of that mattered, we had a great day!!  Robby made friends right away with Lucy and Snoopy!!  but the true highlight was captured in the second picture.  Robby tends to hang his head now.  So we saw Snoopy again, but this time he knelt down to Robby and snuggled with him, it was heartwarming.  Snoopy stayed there with Robby until he finally looked up and saw Snoopy!!!  I thanked Snoopy and he gave me a big hug!!!!  Memories like that are exactly what I am hoping for, they will be something to hold on to when Robby is gone.

I don’t want anyone to think this year is going to be a blog full of memories with Robby (all though there will be some), but I am using this as a reminder-life is short, don’t miss it!!!!!

Same story…….different day

I find myself once again in a familiar place.  Almost two weeks ago my son Robby went into the hospital.  Now that isn’t an unusual event for him, except this time it was a planned in advance.  I can’t remember the last time that happened, but he needed a procedure so we scheduled it, making possible to pack and prepare in more that ten minutes.  He ended up staying longer, something always seems to happen. Now he is back in the hospital, as so many times before.  You see Robby always seems to get discharged just a little too soon and then before you know it we are back in the er and many times readmitted to the hospital.  That’s what happened this time.  His planned procedure was to get a g tube placed, of course he had additional problems, while in the hospital his seizures got out of control one day and he had six grand mal seizures on one day.  He also was developing a cough and I tried to get the issue addressed as I hate to go back to the er. Dehydration brought us back, we tried to deal with everything at home but we couldn’t get enough fluid in him.

I found this unfinished post while once again sitting in a hospital room with my son.   And again he was in the hospital earlier in the week, admitted through the emergency room with yet another uti and sepsis.   In on Monday, discharged late Thursday morning and back to the er at 2 am Saturday morning and, of course, readmitted with a secondary infection and seizures, four Grand Mal and two Tonic seizures this time.

While the reasons for admission is different, the main difference between these two events is the dates.   Every time he is inpatient at the hospital I hope that he will stay long enough so we won’t have to come back, but no.  My hospital mantra has become ‘I want to go home, but I don’t want to have to come back.”  So far it hasn’t worked, but you know me, I stay optimistic-why I don’t know.

Black Friday Shopping–Mall vs Pajamas

Black Friday shopping has become part of Thanksgiving-like leftovers.  I know my Mom and I used to spend part of Thanksgiving Day with the ads deciding what stores we would go to and in what order-like a well calculated battle plan.  Then we would be up and out at dawn with our lists, ads and layer upon layer of clothes.  When my agoraphobia made it impossible for me to go to the sales it seemed that was the end for our shopping.  But then we discovered the wonderful world of online shopping.  Not only was this a new way for us to continue to shop, but best of all we could shop in pajamas-it doesn’t get better than that.

This year I decided to go out to a couple of stores on my own.  At 7 AM I was at Old Navy, it was a great experience.  They had an amazing sale and lots of employees to help and every check out was open.  After that I felt confident to try another sale, so about 3 PM I went to Target.  It was busy, but not crazy.  I had two things I was looking for, the first took me to the men’s department.  What an ordeal, they had moved the already crowded racks even tighter together.  I still go out in my wheelchair-it makes me feel safe enough to go places.  So, I saw what I was looking for and I tried to make my way through the maze to get there.  I got almost there when my wheelchair got stuck, I could not move forward or back.  So I had a panic attack-I haven’t had one in a very long time.  The only way I finally got out was to push a display enough to back out.  I tried to find the other item, but had no luck and I decided that I just wanted to leave.

What I learned from this experience is that even if you can go it doesn’t mean you have to go.  And shopping is pajamas is so much better than fighting a crowd.  So next big sale I will be at my computer with my stack of ads, and yes in my pajamas.

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A Goal Left Unfinished

I had a friend that introduced me to the wonderful world of ballroom dance lessons a few months ago.  This was a test of my willingness to further push the limits of my comfort zone.  I went there in my wheelchair, something not often seen at a dance studio.  I worked very hard to be able to drive myself there, which was so much further than I had ever driven before.  It was important to me that I could get to the studio on my own.

At first I was only able to be in one corner, then my one corner and one side and my one corner and the other side.  Eventually with a lot of help, the patience of the instructors and my determination I made it all the way around the outside edge of the dance floor…this was huge for me.  I even pushed myself to walk into the studio from the car pushing my wheelchair.  The center of the dance floor was a scary place, but I wanted to overcome the fear and anxiety.  I tried and the instructors tried to help…but it’s a goal not met.

ballroom-dancersI have had to quit dance classes for financial reasons…a painful decision.  I miss dancing, the friends I made and the people I care deeply about.  But the thing I can’t seem to get past is the goal not achieved…the center of the dance floor.  I don’t deal well with things left undone, but I have to find a way to deal with this unfinished goal…..how?  Good question.

A Night Out at a Bar-With Music

I have been pushing myself for a long time now to expand my comfort zone.  When my mother died in 2010 I pushed to be as independent as possible and take care of what my son and I needed. With a lot of work and determination I accomplished that goal, but as always I hope to do more.  Well, then in May of 2012 I was diagnosed with stage 4 cancer…that has certainly changed things.   It has pushed me even harder, not only to do more, but also to live more.  It is amazing how important things can become when you find out you have less time to do them.  I have pushed myself so far from my comfort zone that even I am shocked!!  As I keep telling everyone ‘life is short’!!

So in that mindset I had the opportunity to go to a local bar called Gallagher’s and hear my friend’s band play.  It was an amazing night; I have not been in a bar for about 23 or 24 years.  The best part was the band, Jack N Peg (photo below), their performance and music were great!!  I loved it, as did the rest of the crowd.  The very talented members of the band are Buddy Nuggetts, Mind Blower Pete, Cool Breeze K and Midnight Swami.  It was fun to be in the crowd, sitting on a barstool, drink part of a beer and enjoying one of my favorite things-live music.   And best of all there was no anxiety or panic-just fun!!

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It was a great night-one I hope to repeat soon!!!!