Category: Life

Memories and a Memorial

I have wanted to write about the events going forward from Robby’s death but I haven’t been able to put it in writing.  So I am going to try now.  I found a great escape in the planning of his memorial service, there were so many details to attend to and I wanted it to be as special as possible.  I obsessed over every detail from the music to the food to the arrangement of chairs to the photo centerpieces even to the paper products and supplies.  I felt like this was the last thing I could do for him.  The service itself was under the planning and direction of my amazing friend Rev Suzette.  Two days before the service it felt like everything fell apart.  I suddenly didn’t have an outfit to wear, I was trying to finalize the food order (which involved me giving my credit card number on the phone in a busy parking lot) and realizing that I didn’t have help for setting up on Friday.  Well I went shopping and came home with lots of pieces that could become an outfit, the catering order was finally complete and I set up everything myself, with the exception of one table that my friend Jo helped me move.  I think in the end it was ok setting up alone, it gave me some time to ‘deal’ with the coming service.

The day of the memorial service I was holding together the best I could, I had told Patrick that my goal was upright and dressed as my work was done.  The service was beautiful and an amazing tribute and celebration of Robby’s  life.  There were about 26 or 27 people here, it was great that so many people wanted to be present.  Patrick did bring some lightness with him, he brought bags of assorted color/assorted size pom poms.  We all became his canvas, whether he placed them inside hoop earrings, or on the front of shoes, or tucked into the collar of a shirt, or even filling the inside front of a top.  Everyone seemed to find delight in the colorful little distractions.

Lunch followed the service and by then I couldn’t pull off my ‘illusion of normal’ so I just tried to separate myself and hope I could just blend in with the background.    People tried to talk to me but I just felt shut down and I really didn’t hear what they were saying.

We planned for a select group to stay for an ‘after party’.  We had bought wine and beer, three of Robby’s nurses (Kevin, Sabrina and Angela), Patrick and David and a couple of my closest friends stayed.  It was a good plan as it allowed us to talk, cry, laugh and share.  At the end it was Sabrina, Kevin and I; that was great we continued to talk and just be together.13599795_10210129939393400_3343926580611659186_n

 

Frustrations and Heartbreak

I haven’t posted for a while, my life has been a  new level of crazy.  April 3 my son Robby was admitted to a hospital where he stayed for 31 days.  He had some horrible things happen to him there and the only way I was able to get him out of there was to put him on hospice long enough to get home.  This lead to another hospitalization (different hospital) so we could get him on a feeding plan.  We thought that had worked but the day after he came home we had to stop that feeding plan.

We saw one of his doctors and the only option was TPN which is iv nutrition.  And so the battle began-for three weeks I fought and fought, I faxed documents and I had endless conversations with his doctor who also fought and fought, faxed documents and was just as frustrated as I was.  But the infusion pharmacy would say we just weren’t quite there.  In the mean time Robby was getting weaker and losing more weight, but he was hanging in there.  The last hurdle was down to one blood test-albumin.  Robby’s albumin was 3.6 and it had to be 3.4 or less….seriously.

At the three week mark things took a horrible turn, we couldn’t get him awake and we couldn’t get a blood pressure reading.  We called 911 and they couldn’t get a reading either, I told them about his lack of nutrition so they checked his blood sugar which was less than 20.  They took him to the second hospital because all of his doctors are there.  He was in a coma, he had severe septic shock, pneumonia, was severely malnourished and his lab values were a mess.  They tried more than once to start nutrition but every time he got refeeding syndrome which caused his lab values to get even worse.  They ran so many tests but answers were in short supply.  The ICU attending doctor told me they felt he was not waking up because they believe his blood sugar had been that low for a period of time which caused brain damage and you don’t come back from that.  We also learned that some of the meds he takes create a false high reading for albumin-you would think a pharmacist might know that.

So the day I was dreading was here-decision day.  Robby’s doctor that fought with me for the TPN had been there to support me at the hospital, but this time not as his doctor but, as he put it, as family.  He came and we made the decision together that the best thing for Robby was to let him go.  My heart broke.  This was the hardest thing I have ever done.  So at 2:28AM on June 11th Robby passed surrounded by some of the people who loved him and is now missed by so many.

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Being Invisible

In the process of trying to get outside the house I found ‘security’ in the form of a broom.  I held onto it (like a crutch) and  it made me feel a little more grounded.  So when it came to getting out of the car I was stuck, but a friend had an idea….a wheelchair.  Well one thing I had learned in therapy is it isn’t about the process (or what it takes) it is about acheiving the goal.  So the wheelchair bridged the gap.  Dr Eppler called the wheelchair the rolling broom…well yeah!!!  Soon I was going more and more places.

My son has been in a wheelchair for 25 years and I thought I had seen all the reaction there were from people….but no.  When I am out in public in my wheelchair I have become invisible.  I have had people walk into my chair, hit me with thier shopping cart, cut me off so that I have to stop fast to keep from hitting them and then if they finally ‘see’ me I usual receive a nasty glare.

Now with my anxiety I don’t do well with an audience, but surely there could be a happy medium!!!  I don’t want special treatment, just equal access to society….it took a lot of work and a long time to get back out there…I intend to stay out!!!!

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Reality Bites

This past week has been full of way too much reality.  We are still living through the consequences of some decisions I made, sometimes it would be better to spend more time thinking, but now it’s done!!!   This week also brought more medical appointments for Robby and I.  Then there was the big reality of the week, my first IVIG infusion.  I have recently had testing that showed that my immune system is not working (simple explanation).  So these infusion treatments will help me be able to get better when I am sick and hopefully not get as sick.  Well I started having side effects during the infusion and by the time it was done I had a headache, horrible low back pain, chills and nausea.  By later I also had muscle pain, lightheadedness, sensitive eyes and fever.  As of today I am still having these side effects, the only thing that has improved is the fever. I keep telling myself this is supposed to make me better.  Then when all else fails my old friend anxiety shows up, just when I thought it was gone.

So, as always, I am trying to remain positive.  But I admit there are times that I feel defeated by life, so I take a few moments and then I once again try to find the upside….this is at times a very difficult task!!!!!

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!!!!!

Another New Year’s Eve

I am trying to refect on the fact it is New Year’s Eve again.  It feels too soon, this year has flown by.  So much has happened this year, some good and some bad.  I have watched my son’s health decline further, we have accumulated more doctors, we had some fun times with friends and spent too much time in hospitals/doctor’s offices/the emergency room to name a few.  As I write this I am sick…again, something that is happening too much.  But through it all what keeps me going is the love and support of a small group of people–they know who they are!!!

As I continue to reflect back on the year I am, as always, grateful for another year with my son, it hasn’t been an easy one, but it is still a gift.  We were able to find time for some fun-we had a fun day at the fair, we made a day trip to San Deigo at the end of summer and at the holidays we spent a day at Knott’s Berry Farm.  We were able to go on our fun outtings because of the help and support of Robby’s nurses, who are like family to us.

I have also been spending some time looking forward, I have some big decisions facing me in the new year.  I am considering moving, a decision I have put off until after the holidays.  It seems like an enormous undertaking, but in the end might be the best choice…so we will see!!!

I have made some commentments to myself, I don’t do resolutions, they don’t hold up well.  I am going to make more time to work on the book.  I am going to do better about posting more here on the blog (it’s not like I don’t have anything to write about).  I want to make more memories with Robby.  And I want make sure that our unique ‘family’ knows just how much we love and appreciate them.

So I guess it is time to take a deep breath, look forward and take a big step forward into the new year……….

Conjested Decisions

The other day I was driving the freeway to yet another doctor’s appointment and the traffic was very congested with people trying to change lanes to get off.  I realized in that moment that is what my life is like right now.  I have made some decision that seemed right at the time and now we are living the consequence of those decisions.  My life feels crazy and congested and I am always looking for an opening to change lanes at get off this crazy trip.  But so far no luck, but I am determined to survive all this or at least find a less conjested route.

The irony of all this is just a few short years ago I could even go out, let alone travel the freeway.

Somethings Never Change…….

Well it has once again been a long time since I posted and as always life is the reason.  I feel like my life is upside down at times and some days I can’t find the time or energy to be anxious about it!  That is really sad!  I would love to share that the reason was I was on a great vacation or maybe there was nothing to write about…but sadly no!  Things with Robby have been bad, his health continues to decline and at times I feel like I am bailing water on the Titanic!!  I seem to vacillate between felling defeated and feeling guilty.  I am working on it, but it may be yet another thing that can’t be fixed!

I am excited about the book; I have my new computer and so work on the book is going to resume-probably late at night when it’s quiet but that’s ok.  I have missed working on the book and the blog.  I also have some pressure on the book and not just from Dr Eppler, we have a focus group reading the finished chapters and they are wanting to read more…ok!!

I am trying hard to get at least some parts of my life back on track, so that should mean more posts or at least more often….fingers crossed!!!!

Anxiety and Living

I, like most people, have experienced some degree of anxiety in their daily life….that’s not what I am referring to here.  Instead I am referring to the anxiety of the ‘survivors’-those left to try to move forward.  There is so much involved in moving forward–it can include making final arrangements, the difficult task of notifying people, trying to find a way to deal with the pain, dealing with property and belongs or even just hoping to get through another day. As for me, I have long believed that death is usually best for the one who dies-no more pain, anxiety, illness and limitations.  But as for those of us left behind—well it sucks.

There is the obvious question of how to move forward—not an easy or simple task.  Even after the funeral or memorial and/or burial there is the anxiety of what’s next and how to cope.  Then if all that isn’t enough, there’s the anxiety of guilt—did you do enough, did you make the right decision or were you there enough……

Then in case you are not overwhelmed with enough anxiety, there is the nagging and anxiety filled question-when will things seem OK again?  Or will things ever be OK again?  When my husband was killed my Grandmother gave me the best answer to that–she told me that people will tell you that time heals all wounds, but she said it does not.  Time, she told me, just lets you find a way to live with it.  I have found that to be true, I don’t think you ever really ‘recover’ from the lost of someone you love–I’m not sure you should.  That probably sounds strange, but all the people in our life, both living and those who are gone, are all part of who we are and if you just cut those parts away what is left?  Now that is a question filled with anxiety!!!

Anxiety and Death

I have had my own issues with death; that’s what landed me in therapy.  Well at least that was one reason.  But I have recently been through an experience that has allowed me to see another perspective of death and anxiety.  I have a very close friend, actually she is like family, and her mother suffered from dementia with lewy bodies.  Now for everyone not familiar with that it is like dementia and Parkensons put together-not good.  I got to know ‘Grammy’ first when she lived with my friend and then by visiting her at the assisted living facility.  Grammy was quite the character, she was feisty, independent and no matter how frustrating she could make you smile.  She was known for what I called circular conversations-she would have a limited number of questions that she would ask over and over and over again .  But everything changed almost overnight, she suddenly couldn’t walk and she wouldn’t even eat her cookies (the only thing she would eat).  We spent three days with Grammy as she took her final journey.  I have always understood the anxiety felt by the survivors, but this time I had the opportunity to watch the other side.  We watched Grammy’s anxiety, her struggle, her pain, and yet with all that we also watched her acknowledge her son on the phone and manage to find words to tell him she was his mother and she loved him.  That image I will carry with me as it was amazing and beautiful to witness.  On day three the anxiety was gone for Grammy and after showing her strength to the end, she passed.  On that day there was peace for her, both before her passing and in the quiet moment of her passing.  But for those left behind there was still plenty of anxiety and pain.  I have always said death is usually a blessing for the one going, but it sucks for the rest of us.

As I sat there on that last day with my two ‘sisters’ we shared stories about Grammy and ourselves and I believe that Grammy knew we were there with her and hopefully that gave her peace. In the short time since Grammy passed I have been facing my own anxiety with death.  As I have written before my son Robby has many chronic health problems and they are getting worse very rapidly.  This is not unexpected, but still very painful.  He is lucky (I know that sounds strange) he doesn’t know what anxiety is-it’s beyond his comprehension. I on the other hand have enough anxiety for both of us.  Something I have to try not to show around him, he does pick up on my emotions.  I am heartbroken about the journey he is starting and not knowing what his journey will be like.  But the one thing that eases some of my pain is that I know in my heart that his father is waiting for him and once again they can be together. On that last day with Grammy we all thought of the things she would do when she would be reunited with her loved ones that have passed before her.

Robby and Grammy have somethings in common, they have people who will always love and miss them and both of them at the end of their journey will be free from all the suffering and limitations they had in this life.