With all that has gone on with the passing of my son I find my anxiety has resurfaced in all it’s glory.  So the other day I went to see my doctor, she told me that she is concerned that I am depressed.  She gave me a prescription for some medication that could help and might make the pain less, of course in the beginning it could make my anxiety worse.  I thought about it, first I am not depressed, I am grieving the  loss of my son.  I am too optimistic even with all that has happened.  Second I don’t know that I want to numb or lessen the pain, I mean it sounds great, but I feel like I need to feel it, face it and try to find a way to deal with it.  When Robert died I buried my pain and eventually I ended up agoraphobic, I don’t want to backslide now with Robby’s death.

Well with all that in mind I did what I always do–research.  I went online, I read self help articles, personal stories, scholarly articles and Peanuts cartoons.  The last one was to lighten things up a little.  And after all that I learned that grief is not depression, grief can lead to depression.  But grief is a process that everyone does differently and there is not right or wrong way to grieve.  So after all that I feel like my original thought was right, I am a mother grieving the loss of her son.

So I did tell the doctor that I was going to try a support group for grief, she thought that was a good idea.  In all my reading online I had seen some groups, so I went back to read about them.  There was one that I kept going back to, it is only for the loss of a child and they were the only one I saw that address losing a child with special needs.  So tonight I went for the first time, I was a little anxious mostly because I wasn’t sure what to expect.  What I found there were people from varied backgrounds, but none of that mattered, what did matter is that we all share something much deeper…..we have all lost a child and are searching for a way to survive and deal with that loss.  A friend asked me what I thought and I said I was going to go again, I need to give it a chance.  Besides these people get it, they are living it.

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.

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!!!!!

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.

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.