A Special Day

Two weeks ago today ( I know – I am not consistent in my blog writing lately), it was the day of my Mom and Dad’s anniversary.  They would have been married 65 years  this year.  I believe it was a bittersweet day for my Mom as she really wanted to celebrate it but without Dad here ( he passed away 7 years ago) it just was not the same.

This is a picture of them on their wedding day.  They look so happy as usually newlyweds look.  Although their marriage lasted their whole life and I can say it was a basically happy, contented marriage, there were tough times.  I remember in my teens I was scared silly Mom and Dad were going to split up.  I knew things were unhappy in our household but was not sure what was wrong.  It’s only been the last couple of years of going through stuff from their house that I pieced together some of what was happening.

Dad was starting a new job as a carpet cleaner.  This was a franchise business. He was responsible for setting it up, advertising and promoting the business, book-keeping, collecting payments etc etc.  If you knew my Dad, he was not an entrepreneur or salesman.  This unfortunately was the worse job Dad could have picked for himself.  What started to happen was that he turned most of these jobs except the actual cleaning over to Mom who was an unhappy and unwilling business partner.  She was not much better at these tasks and so much friction developed. Consequently, without much effort going into the business, financial issues became urgent.

Despite what people might say about those with autism not having empathy or awareness of other’s emotions, I was acutely aware to the point of being terrified.  I was not aware of details, I just knew something was wrong in our household. I tend to be very aware of the emotional atmosphere around me, although I may not understand what’s going on and any tension can really bring on strong anxiety and panic.

To make a blog story short,  I am happy to say that Dad got out of that business and got a job at the public school up the street as head custodian and he excelled at the job.  He was probably the best custodian that school had ever had.  Mom also got a new job as an admitting clerk at the nearby hospital where she also excelled.  These permanent jobs meant stability, especially financial stability in their lives and things were much better for all of us.

Mom and Dad were like two peas in a pod.  They basically spent all their time together with very few other people ever coming into our home.  They were each other’s best friend and companions.  They were truly devoted to each other and although did not outwardly express it often they loved each other dearly.  When Dad was on his deathbed,  I knew how hard it was for him to know he was leaving Mom behind.  I promised him I would look after Mom, a promise I could never break.  I have gotten myself into a real situation where Mom should really be in a nursing home but I continue to care for her at my home because as I said, I promised “I” would look after Mom – not the nursing home.  My friends try to explain to me that me looking after Mom can take many forms including her being in a nursing home but I cannot make my brain switch from what I believe I promised my Dad in his last hours.  My autistic brain is stuck and I am not sure how the future will play out.

What I have learned from watching my parents is that they made a commitment and stuck with it through thick and thin.  It wasn’t always easy or pleasant but they managed.  They provided their children, my brother and me, with a relatively stable household in which to grow up in which was very important to me. From watching my parents over all these years, I have a good understanding of what commitment means.  I am playing out that same kind of commitment as I strive to look after my Mom in a way that is honouring and best for Mom.  Commitment is hard.  You so often want to give up but it’s something very important in so many areas of our lives and in our world and it is so worthwhile.

I put on a huge party for Mom and Dad’s 50th wedding anniversary and I am so glad I did.  They had, and Mom still has, very fond memories of that special day.  It was the first time in my life that I took on a project like that where I had to organize an event and deal with many issues at the same time.  I was terrified I couldn’t do it but was pleasantly surprised that I indeed could manage a task like that.  Since that time I have had a number of other major tasks to organize ( like the cleaning out and renovating and selling of Mom and Dad’s house and the setting up a large, automated, school library with 25,000 books).  That first task of planning Mom and Dad’s 50th anniversary party gave me much confidence to tackle other things in my life and be successful at them and has also helped in convincing me I can look after Mom in her last years.

On what would have been their 65th anniversary, I wanted to do something special for Mom.  I did not know what to do until I stumbled upon an idea.  Mom loves flowers – not bought from a store so much but from a garden.  I had along the side of my house a lovely flower garden I had made in memory of Dad since he loved to garden.  In the morning I went out and picked a bouquet of flowers for Mom, put them in a nice vase and presented them to her as if they were a gift from Dad for his sweetheart.  I think she loved it.  I also had ( and this shows the pack rat in me) one of the picture boards I had assembled for their 50th wedding anniversary.  I brought it up to her sitting room and we had some good times reminiscing over the  pictures of her  wedding, her honeymoon etc etc.  She also had a good time showing them to her PSW and respite worker in the next couple of days.

Those special days are so important even after a loved one has passed away.  I think it is so important to recognize them and celebrate them.  For Mom I know it was a joy to her and I enjoyed talking to her about some of those old memories of times gone by.  I know that even after Mom passes away,  I will continue to celebrate her birthday, her anniversary etc etc.  It brings comfort to me and represents a kind of continuing on of memories and life histories.  It helps me feel stable in an unstable world, it brings an order to my life and keeps that order present as I often struggle to make it through the days, weeks, and months with all sorts of unsuspected things happening to throw a wrench into my life.  So next year, whether Mom is here or not,  I will be celebrating on July 12 – to honour two very special people in my life and the important legacy they left me.

Mom’s Wish – My Loss

Today was Dad’s birthday. I wonder if they have balloons in Heaven?  He would have been 89.  He would have caught up to Mom who was 89 in April.  Mom was the first to mention it this morning.  I sang a lively rendition of “Happy Birthday” to Dad much to Mom’s delight. ( I am know for my serenading people on their birthday with various renditions of “Happy Birthday” including the Hallelujah chorus rendition!)

I have been getting more and more worried about Mom.  She looks so sad and dejected.  She sits in her chair with her eyes closed or just stares off into space.  She is not having good nights, often up with trouble breathing and not feeling well.  I have been going to bed myself wondering if she will be awake in the morning.

Tonight was an especially hard time that has catapulted me once again into hyper-vigilance with hyper-anxiety.  I asked a simple question I have asked her a million times.  ” Is there anything you would like, Mom?”  I’m usually referring to some food she might like.  This time though her answer took me by surprise.  She said, ” I want to go home.”  ( home meaning Heaven).  My heart quickened in my chest and my stomach felt like I had just been punched.  I replied, “I know you do Mom.  Although I want you with me forever, I know you want to go home.  I can’t be selfish here.  It hurts me to see you suffer and be miserable.”

What transpired next was a half-hour conversation where she asked me a number of questions like how much was left to pay on my mortgage,  what would I do for income that I would not be getting from her monthly stipend etc etc.  I got the feeling she was wanting to know I was going to be alright without her.  I assured her I was going to be alright.  I had a few close friends, a church family that I felt closer than I ever had before, I was going to be an Aunti to a new little adopted girl who I adored by my best friend’s daughter, I had my brother, my “belle-soeur” ( my sister in law) and my wonderful niece and nephew and my cats.   I told her I was trusting in God to look after me and provide all that I needed.  ( she does not know I have autism and when I said this I knew I was trusting God for a lot more than what she might think.  I was basically going to be alone.  I had already a hard time coping in the world.  I knew trusting God was going to be key for me to my being able to keep going in this world as someone with autism)  I then showed Mom the ring I had bought but had not shown her yet – a silver ring with 2 hearts and an infinity symbol band on the ring – symbolizing mom and me being together forever.  She was quite interested although I don’t think she grasped the significance the ring had for me.  I am very sentimental and I have many, many things that have special meaning to me.  Things in my life are given meaning I think to help ground me and help to keep real the parts of my life which are no longer tangible.  Memories are cemented in my mind by a thing that I attach a meaning to.  Unfortunately, it means I have a lot of things in my life.  Sometimes people don’t understand my attraction to things of all sorts.  They help glue all the pieces and memories of my life together.

So back to our conversation… We continued talking for a while and then just sat quietly with each other, the cats joining us in the bedroom.  We were all together my little family.  All I could think about was what was going to happen?  Was Mom going to die tonight?  I don’t know.  She may surprise everyone and live another several years or she indeed may go tonight.  I just know that these episodes put me in such a state of hyper-vigilance for days until I think the danger is over and things resume a calmer state.  This wreaks havoc on my whole system.  Everything goes haywire – my eating, my sleeping, my ability to concentrate, to look after the house and all the other things I have to tend to.  It exhausts my already exhausted frame.  I feel shell-shocked.  I feel physically sick.  I cry.  So now as I am writing this I wonder – will I be able to get to sleep tonight?  I don’t know but will probably need to sleep part of the night in my easy chair wrapped in a blanket, my knees tucked up under my chin.

Mom’s wish.  A simple wish to go home.  We all wish to go home when we are away.  I can’t deny her that.  But Mom’s wish come true means my loss.  Am I selfish? Yes, indeed, at times I am.  I want her here with me – always!  My loss will be overwhelming, immense, unfathomable, almost unthinkable.  But my loss will come just the same.  There is no control here, no say.  Just loss.

As I am typing here, Mom is asleep in her room.  I just heard her cry out “Lorne!”  That’s Dad’s name.  Oh, how she misses him.  She needs to go home.  I must say goodbye soon.  I must loosen the grip I have on her life and let her go.  And accept the loss.  Wishes are more important than losses.  Wishes are often the result of losses.  I wonder what wish will come forth from my loss.  Tonight ( or in the days ahead) a wish and a loss rest in the heart of God. A God with a heart big enough to make any wish come true and any loss to be cut down to a size that is not overwhelming or unbearable by His great great LOVE.

That Which I Have Feared the Most

A quote by Joss Whedon says, “Loneliness is about the scariest thing out there.”  Concerning my Mom, I don’t fear her dying.  I know she will go to Heaven and I know she is ready to go.  She is weary and tired of life.  I don’t fear the funeral.  I spoke at my Dad’s funeral and I will also speak at my Mom’s funeral.  What I fear more than anything is BEING ALONE.  For years this fear has preyed on me, following me into my dark moments and even lurking out in the bright sunshine.  It’s a fear so overpowering that for a number of years I was adamant that when Mom went to Heaven, I was going to follow her shortly after.  I was NOT staying on this earth by myself.  It has only been in the past year that I have mustered the courage to commit to staying here on earth till my last breath is chosen by God not myself.

I have struggled to understand this incredible sense that I will be all alone.  My friends annoyingly ask me,” Well, what are they?  Chopped liver??”  Don’t they mean anything in my life.  I am also told I will have my church family.  Yes, I know that full well and am very grateful for the wonderful people in my church and I know I will need them like I have never needed them or any group of people in my life before.  I have my wonderful brother and sister in law and an amazing neice and nephew and other cousins.   But for some reason that escapes me it is not the same as having your mother alive.

Hope Edelman who wrote Motherless Daughters: the Legacy of Loss has this quote which helps me understand a  bit of what I may be going through.  She says, “When one parent dies, the world is dramatically altered, absolutely, but you still have another one left.  When that second parent dies, it’s the loss of all ties, and where does that leave you?  You lose your history, your sense of connection to the past.  You also lose the final buffer between you and death.  Even if you’re an adult, it’s weird to be orphaned.”

For me, my mother has always been a huge part of my life even when the huge part was negative.  For years I struggled with a love/hate relationship with my Mom.  I also struggled with feeling very abandoned by my Mom as her autism ( and my autism) played a role in her parenting of me and my responses that left me feeling very detached from her. She was often very depressed and not emotionally available to me and this left me with a huge hole in my inner most being where I longed for her and the hole ached all the time.  I also longed for her acceptance.  Mom in her lack of understanding how words can hurt has told me ( and others) that she wanted and boy and she got me.  Not a month goes by and I am again reminded of this family fact.   It was only when Mom moved in with me 3 years ago that slowly that hole filled up and now it is basically healed.  It has healed because for the first time in my life she sees me as valuable and acceptable.  She recognizes that without me she is totally lost in this world with noone to look after her. I now have worth.  I hold no grudges and have forgiven her.  Looking after her, God has given me such a love for her that it is overflowing.  I love her with such tenderness I never knew I had in me ( and actually I don’t – it is God in his mercy giving me the gift of service and love for my Mom)  I am forever grateful for the last 3 years because now when she passes I have no regrets.  That is a precious position to be in.

I really feel that when Mom goes I will be totally alone in the world.  It is the fear of all fears.  Mom has always listened to my stories, my news in my life, she has prayed for me every day, she even listens to my endless  passionate chatter about my beloved cats.  Who will do that when she is gone??  Noone that I know.  Only a mother would do that.  But like the quote I mentioned above, there is something much deeper,  a much more profound loss when you lose your last parent.  You are indeed an orphan in the world.

If I am going to remain here after Mom leaves this earth I must find a way to survive and not just survive but to continue to grow and flourish in who I am.  Janet Fitch in White Oleander quotes, ” Loneliness is the human condition.  Cultivate it.  The way it tunnels into you allows your soul room to grow. Never expect to outgrow loneliness.  Never hope to find people who will understand you, someone to fill that space.  An intelligent, sensitive person is the exception, the very great exception.  If you expect to find people who will understand you you will grow murderous with disappointment.  The best you’ll ever do is to understand yourself, know what it is that you want, and not let cattle stand in your way.”

Did you know that God talks about orphans in the bible?  John 14:18 says, “I will not leave you as orphans.  I will come to you.”   And in Psalms 27:10 it says, “When my father and mother forsake me ( or die) then the Lord will take me up.”  And Heb. 13:5  says, ” I will NEVER leave you nor forsake you.”  These are precious promises that I intend to hold onto with a grip so tight that nothing can take them away from me.    And one last one.  Isaiah 41:10 says, “So do not FEAR, for I am with you, do not be dismayed for I am your God.  I will strengthen you and help you.”  I can either choose to accept these promises as the total truth that they are or I can continue to tremble in my fear of being alone.  I know I will feel alone but there is someone bigger than that aloneness that I can take refuge in and find peace.

My job now is to plan for the future without Mom.  And I am doing that.  God is a God who believes our purpose is not wrapped up in another person.  Our purpose is wrapped up in God.  Yes, my purpose now is to look after Mom but that will end and I will have to find new passions and purposes to carry on with.  This blog will be one of those purposes.  My job at the library will be one of those purposes.  My desire to speak and advocate for those with autism will be one of those purposes.  My passions like photography, my greeting card business, my new love of knitting, my books, my desire to write a book, my crazy cats are all ways I will carry on in this world.  But as I carry on with all these things I will carry my mother’s memory in everything I do and think each and every day.  As long as I remember her she will never be far away.

No matter how much planning I do, no matter how much courage I muster up, I know that which I fear will come true.  I will feel alone and feel like I am nothing in this world.  But when you have nothing left but God you have more than enough to start over again.

I read another quote, this one by Ayn Rand who said, “Every loneliness is a pinnacle.  I am not exactly sure what this author meant by these words but I looked up the word pinnacle and one of the words for it is “Peak”  like a mountain peak.  I imagine myself on the day Mom dies as standing on a mountain peak surveying my world. I could jump to my death and follow Mom to Heaven or I could fulfill God’s purposes for me that have not been carried out yet and be an adopted child of God with much to do.  There is still a promised land out there waiting for me, a land with milk and honey and as I stand on the peak of an new dawn and the sun rises I see all the richness I still have to live for.  Yes, there are giants in the land to be conquered but I am confident me and God can make mincemeat out of them one giant at a time.

 

 

Anniversary Grief – what’s that??

Today is May 1st.  May is an anniversary month.  No, not a wedding anniversary – it is the month in which my Dad died.  On May 20 it will have been 7 years since I’ve had the chance to talk to my Dad, give him a hug, tell him I love him and joke with him.  I miss him all the time but when May comes around the missing him that was there in the back recesses of my mind comes to the forefront – right to the centre of my thoughts and my life.  No, it is not as intense as it used to be but it still affects my days.  What I miss most is not being able to tell him all the things that have been going on in my life.  I was never able to tell him of the incredible experience it was for me to be librarian at the brand new school and how I set the library up myself and how it was the best two years of my whole 33 years in the school system.  I couldn’t tell him that I retired after struggling so hard for so long to work and be a “normal” person with a job.  I couldn’t tell him that I now work in the  Public Library system and I look after the library at my church.  He’s never met my new cat, Gus Gus and does not know of all the crazy things he has done.  And most of all, he doesn’t know that Mom has lived with me the last 3 and a half years and that I am keeping the promise I made to him on his death bed – to look after Mom in the best way possible.

What is it about anniversary grief that is like a sore that just keeps opening up and oozing.  Does it ever heal?  I don’t know.  Actually I hope not.  Anniversary grief for me is a way of never forgetting. I have always been very sensitive to anniversaries of all kinds.  Dates and events in my life hold such meaning that they are played over and over each year like a broken record.  Even if my conscious mind forgets the anniversary, my unconscious mind will react and I will realize with surprise why I was crying or feeling down.  I don’t know if this is an autism thing or not.  I just know my brain runs in sort of a groove year round with different things coming to the forefront at the precise time each year.  A sense of order even in my memories, categorized by date, severity, and a number of other slots they fit into.

Anniversary grief also for me has a sense of anticipation to it.  With Dad, I dread May 20th getting closer and closer and I think it will be a horrible day in some way.  In reality, it usually turns out to be a fairly regular day.  The anticipation is far worse than the actual event.  I know this but somehow it doesn’t really help.  And when the day is over there is a relief that I got through that dreaded event.

I need to make a plan.  I need to make a plan to do something positive on May 20th.  I could work in my flower garden, the garden that is a memorial garden to my Dad who loved to garden and plant flowers.  I could write him a little letter telling him of all the things I wish I could say to him.  I could buy a can of peanuts and munch away at them.  I always gave Dad a can of peanuts for Christmas because he loved them.  The trick was to wrap it in such a way that he did not know what it was!  I could phone my Uncle John and tell him I love him ( that’s Dad’s brother) because I do love him bunches and bunches.  Maybe if I think about doing some of these things the knot in the pit of my stomach that gets tighter and tighter as the month goes on may just instead loosen it’s grip and wrap around the oozing sore and send some healing to the grief.  It’s worth a try don’t you think?