Who is the Parent??

“The son (daughter) went to his mother.

He picked her up and rocked her

back and forth, back and forth,

back and forth.

And he (she) sang this song:

I’ll love you forever,

I’ll like you for always,

As long as I’m living

my Mommy you’ll be.

This picture and quote is from Robert Munsch’s book, “Love You Forever”  (words in brackets are mine).

I’ve always thought this book was very profound but did not imagine that I would be living this book.  No, I am not actually rocking my Mom on my lap but as she gets sicker and weaker the roles have become less defined, much more blurred and obscure.  They are not black and white like I thrive on.  They are in some very uncomfortable grey area that I am struggling to deal with.  The last 3 years that Mom has lived with me I have slowly been taking on more and more of her care.  She used to make her own lunches, she used to do my dishes every evening, she used to go shopping with me.  Now she hardly eats, she lives basically on Glucerna – a meal replacement drink.  She doesn’t go downstairs now so the dishwasher she bought me does the dishes or Sandra our respite lady kindly keeps my kitchen clean.  Mom does not leave her little abode upstairs in my house.  She shuffles from her bedroom to her sitting room to the bathroom – back and forth between the three.  Everyone comes to her now.  Foot care, hair dressing, nurse, bloodwork etc etc.  Mom’s life has shriveled down to a very small world.  This past week she fell twice.  Now my world has suddenly become much smaller as well.  I do not leave her unattended anymore.  No more wandering for me.  I spend much time at my home rocking in my chair downstairs as she rocks away in her chair upstairs.  She sleeps a lot,  I am exhausted and I sleep a lot.  I do basically everything for her now.  I help her dress, I get her meals, I do her finances, I dole out her pills, I clean her clothes – every aspect of her care is in my hands.  Without me she is helpless.  She has been getting much weaker and after she fell this week she needed help getting into bed.  So every night I help her into bed, tuck her in and smother her with kisses and tell her I love her.  There is something wrong with this picture.  This picture does not compute in my brain.  Aren’t I the daughter??  Aren’t I the one that was tucked into bed every night?? I find this the strangest part of my taking care of her yet.  I can’t quite wrap my head around it.  Is this still my Mom?  Is she still in this frail, failing body?  I’m not used to being a parent.  I have never had kids of my own.  I don’t know what a parent feels like.  I don’t want to be a parent.  I want my MOM!  I want a parent.  I don’t want to be an orphan.  I want someone to rely on.  I want someone to look after me.  It is so comforting even when I object to what she is  saying when she tells me off.  She will tell me “Don’t buy anymore clothes.  You have too many clothes”  She will still offer advice like when she gives me ideas for my Summer Reading Program I am doing at my church.  And when I bought a really way out pair of boots she jokingly exclaimed “Are you really my daughter??”  Moments, glimpses, that is all I have now.  I have my Mom in moments and I see her in glimpses.  Like glancing sideways in a mirror.  Another way of looking at it.  A shadow.  There but not there.  For me as a parent it’s more like hours, days, weeks – not moments.  I am parent almost all the time.  But you know,  I am only a custodial parent.  A taking-care-of parent.  Mom bore me 58 years ago now.  My parenting is just a moment in the time-line of our life together.  No matter how hard this is to comprehend and accept I KNOW that this little shriveled up lady who struggles to even take one step in front of the other is STILL my MOM.  Will ALWAYS be my MOM.  And so as it is almost time to tuck her into bed for another night I repeat the words of Robert Munsch,

I’ll love you forever,

I’ll like you for always,

As long as I’m living

my Mommy you’ll be.          ( Goodnight Mommy, I love you! xxoo)

 

Helpless and hating it…

One word we so often associate with those with autism is the word CONTROL.   We want and NEED control in our lives.  We need sameness and order, predictability and logic.    So what happens when those things disappear out of the picture and get replaced with a terrible sense of “out of control”?

That is where I am right now.  I love the somewhat whimsical word discombobulated to describe how I feel when my world is mixed up and confusing but my world right now is beyond discombobulated.  I am what some have quoted down through the ages as in the “dark night of the soul”.

Through circumstances that are happening in my life right now I feel totally helpless. I couldn’t think of a worse word to describe how I so utterly feel.

What do you do when the person you love the most in the world is dying and you can do nothing about it?  Not only that but every day, week in and week out, you watch her deteriorate.  You listen to her laments about wanting to die.  You see the  pained look in her eyes.  You see her struggle to make her body do what it just can’t do any more.  You see her fight tooth and nail what is happening to her and understand that she knows she is losing the battle.  Getting old is not pretty.  And I don’t just mean physically.  Mom complains about the wrinkles on her skin and the ugly brown spots  on her arms and hands as she calls them. She complains she can’t hear and she can’t see.  She gets so frustrated when she tries to work on the computer and her hand can’t control the mouse like she wants and all kinds of strange things happen as random things are pressed.  Then I have to come to the rescue and bring every thing back into order again.  If only I could do that as easily with her life as I do on the computer.  And that’s the problem right there.  I can’t do anything about any of this.  Not one darn thing.

I think the word helpless and all that it entails is one of the most saddest words in the English language.  The feelings of helplessness knocks the wind out of you and brings you to your knees.  Your heart aches like it has never ached before.  Watching someone struggle day after day,  knowing someone is miserable and depressed,  knowing someone feels useless and forgotten in this world of do, do. do…   What can you do when you are 89 and can’t hardly see, can’t hardly hear, and can’t hardly get to the bathroom, and can’t do pretty much anything.

I’m struggling with all this.   I keep thinking there must be something I can do to make things better.  After all, I have always been the family member that made everyone happy, and solved their problems.  What if there is no solution?  Nothing except WAIT…   Wait for life to play out the way it is to go.  And how long do I wait??  A week, a month, a year, 3 years???

Misery breeds misery.  And as I deal with the misery my Mom feels it wraps it’s twisted fingers around my life as well.  I am miserable – so miserable I am almost immobile.  I sit and rock in my chair with my blanket wrapped around me to shield me from the world I am facing.  It’s all I can do these days.  I can’t handle my life that is so out of control.  I can’t handle that there is no predictability.  I can’t handle that sameness doesn’t exist anymore.

Being a caretaker for my mother wasn’t supposed to be this difficult but the reality is that I am not the only one going through this.  Unnamed, unnoticed households across this city, this province and this country are going through the same grief and helplessness.  We privately go about our job of taking care of our loved ones and often deal privately with the pain and struggle it entails.  That is partly why I am writing this blog.  To bring a voice to those of us who chose or are forced into caring for the elderly members of our family.  And because I am autistic,  the issues can be much more intense and debilitating than for the one without autism.  Many of us have been diagnosed late in life.  I was not diagnosed till I was 50.  My Mom does not know I have autism and does not know that she is likely on the spectrum herself.  In my particular case, it is best that way.  But it brings with it a host of problems and a lot of suffering in silence.

I have a faith.  My faith keeps me going day after day.  I have the assurance that my God will never leave me nor forsake me.  I have the assurance that I don’t have to be a slave to fear because I am a child of God.  And I won’t be totally alone when Mom goes although I know it is going to feel like it for a while.  Right now, being helpless puts a whole new spin on my faith.  Being helpless, means I have to give up that need for control and trust in the God who holds all things in his hand.  It’s a tough lesson, especially for an autistic.  But I know without a doubt, with my whole being that trusting in God to look after the helplessness is the only way out of this “dark night of the soul”.  As I talked about in one of my other blogs,  “life begins at the end of your comfort zone”.   And so tomorrow I will wake up and life will begin once again and I will survive this.

In a Twinkling…

A couple of days ago I went to one of my favourite places to shop – Value Village.  For anyone who is not familiar with this store it is a second hand store selling everything under the sun.  It is a mecca for treasure hunters and a big part of the fun of going is in the hunt itself.  To find that elusive item that you just never thought you would ever find, or that unique item that winks at you and begs you to take it home with you.  Well, I was looking at the jewelry when I spotted a silver bracelet.  I love silver jewelry and as I looked closer at it through the glass counter I saw the words ” Kate Spade New York”.  I love Kate Spade things but I can’t afford them so I just drool when I look at items in a store.  Here was my chance to have a real Kate Spade item and for the super price of 7.99 ( and I had a 30% off coupon).  Can’t get any better than that.  When I got it home and took a closer look, I realized it had a saying inside the rim.  It said “in a twinkling”.  How interesting I thought considering what I have been going through.

All my anxiety, grief, worry, heartache that I am experiencing daily these days is all wrapped up in that little saying,  “in a twinkling”.  When Mom takes her last breath on this earth, in a twinkling she will be whisked off to Heaven and in that same twinkling, my life here on earth will change forever.  It’s hard to believe that a mere moment in time can change everything!

I wonder every day what it will be like without Mom.  I also wonder how I will handle Mom passing.  Will I fall apart?  Will I act as if nothing happened and just stuff everything inside and move forward with my life?  Will it be a bit of both?  Will I react right away or will it be days, weeks, months later?  I’ve read some research on autism and grief that states that we often have a delayed reaction to our grief.  Will that be me?

A number of years ago, I had a very special childhood friend who I called my Aunt Agnes.  She was not my real aunt but a distant relative just the same.  I loved her to bits and loved to visit her.  When she died I was living hundreds of miles away and I invented an elaborate scenario in my mind of how she was not dead.  I believed this with all my heart for several years till I ended up in the hospital for depression and suddenly and unexpectantly it all spilled out.  I cried for days and days.  Am I going to do something like this with Mom?

I also have a habit of closing myself off when I am upset.  I don’t answer the phone, I lock the front door and basically retreat into my own world.  This is my greatest fear of what might happen when Mom dies.  I told my Doctor the other day to please, please not let me do this if it happens.  She said that for me it may be alright for it to happen for a little while but she would be there to help me reconnect with the world if I couldn’t.  It scares me.

I also worry if I will be able to do all the things that need to be done for the funeral etc.  When my Dad died my Mom was there to help me but I won’t have her this time round.  I am determined to speak at her funeral just like I spoke at Dad’s.  Will I be able to get something together to say?  Something that is honouring and loving and will bring a sense of legacy and meaning to Mom’s life?

How can a moment in time be so scary?  That “in a twinkling” is the stuff of nightmares for me.  But I guess I have to think that for Mom that “in a twinkling” will be the stuff her happiest dreams.  “In a twinkling”, she will no longer be in a body that does not do what she wants it to do, she will be free to walk without weaving and stumbling from the effects of the stroke.  She will have no more headaches and she will have her “new” head she always tells me she wants.  She won’t be an “old lady” that she despises being so much.  Best of all, she will be again with Dad and all the other members of her family that loved the Lord.

But “in a twinkling” I will be left alone here on this earth.  And I dread that moment with every part of me.

So back to the bracelet…  I am wearing it.  I am going to continue to wear it.  It is a daily reminder of what is to come but it is also a daily reminder of another “in a twinkling”.  One later, sometime down the road when I too, will in a twinkling, go to be with Jesus and I will see Mom and Dad once again.  This bracelet can be a symbol of hope if I choose it to be.  It’s all how you look at it.  Momentary pain for eternal gain.  And what I do after that “in a twinkling” that whisks Mom away from me will determine what the time between those 2 twinklings is going to be like.  I want to continue to live my life to the fullest.  I want to try new things.  I want Mom to be proud of me in how I handled myself.  I want God to be glorified in my life that I have left.  I want to help people.  This girl has plans…..lots of plans….. that will be for another blog!

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.

Mother’s Day Every Day

This is one of my most beloved pictures of my Mom from when I was young.  Here we are ( I am on the stool clutching the next book to read), my cousins and me listening intently to Mom read us a story.  I loved when she read to me which was something she did every day.  Today in my life I hold that love in my life by my own love of books and reading and even working in a library.  Books are one of those things I am passionate about and even collect not just to read but to hold, smell, hug and treasure.

It’s Mother’s Day today.  I am going through this day with a lot of mixed feelings.  It’s a happy day of celebrating my Mom but it is mixed with fear, anxiety when I wonder if she will be here next year to celebrate or will she only be here in my memories.  I am treasuring Mom today like she was a precious jewel.  I played hooky from church to be at home with her.  I have given her a gift, a poem and I made her a bouquet from my own garden of spring flowers and put them in my sterling silver baby cup.   I washed her sheets so she will have fresh sheets to crawl into bed tonight.  I am getting her one of her favourite meals from a nearby restaurant for us to enjoy tonight.  I am making her a favourite dessert – coconut cream pie.  I want this day to be not any Mother’s day but one that I can say I did my best to show my love to this amazing woman I call my mother.

You see, it has not always been this way.  There were years when I did not want anything to do with Mother’s Day because I was bitter and angry towards her.  I had deep hurts in me that would fester constantly and I struggled for years with feelings of shame, inferiority and abandonment.  I had a huge hole in me that would not be filled where the security of knowing my Mom loved me and cared about me was empty, dark and engulfing.  This hole overwhelmed me for a good portion of my life.

It was only after Mom came to live with me 3 and a half years ago that healing began to happen as I had to forgive and love this woman in order to take care of her in a way that I had promised my Dad I would when he died.  I had grown up believing it was biblical and right to honour your mother and your father.  I never let my Mom know the deep hurt I had from her. I always kept that inside of me and asked God to take care of it.  I never wanted to hurt Mom and have her know she did not do the job I wished she had done.  I bore the hurt silently in her midst always wanting her to love me.  As I have taken care of Mom these last few years,  washing her clothes, getting her meals, injecting her with insulin and wiping up urine I felt my own desire to be loved slowly be replaced by a great desire to love her.  And as I recognized the autistic traits in her, I came to understand by leaps and bounds why she was the way she was.  She was not out to hurt me ever.  She just always did not know how to love me the way I wanted or needed to be loved.  She did not understand that the words she often said would sting every time she said them and cause bitter tears.  She was just telling family stories, her own recollections.  Living with Mom, I saw her in a whole new light.  A fragile, needy woman who had her own fears, anxieties and depression.  And I just continue to love her more and more each day.  I have a deep compulsion to protect her, to comfort her and to shower her with the best of everything I have to offer.

I want you to know this was not possible in my own strength.  It has been through the grace of God, his love flowing through me to her,  his strength to carry on each day when it felt like all I wanted to do was quit.  I rely on this strength every moment.  This is the hardest job I have ever done in my life.  Although I have healed so much and there is now no longer an empty, gaping wound in my soul, I now strangely enough, have another problem.  Because now I don’t want to lose her now that I have found her and feel loved by her.  I finally for the first time in my life feel accepted by her and now I could lose her any day.  BUT…  I have a precious gift that I now carry with me daily.  When my Mom goes on to Heaven,  I will have no regrets.  I will have no bitterness, no anger.  I have peace, a blessed peace that is beyond understanding.  God’s peace.  These 3 years have been the hardest of my life but they come with the greatest reward ever – the reward of no regrets and the reward of getting to know my Mom as she really is and not as I thought she was.   Life is not easy but life is good.   And today is a GOOD day.  It’s a celebration of a mother and daughter who have come through the fire and have been transformed into a precious pair of diamonds.  We are survivors – Mom and me.   Happy Mother’s Day Mom.  I love you so so much.

 

Anticipatory Grief Again – Really!?!

Every day as I look after Mom I live in a state of limbo between death and life.  I know Mom is going to die sometime in the future – probably sooner than later.  I watch her slowly deteriorate as if she were a slowly deflating helium balloon.  But then there is always the possibility that a proverbial pin will puncture the balloon in one single deadly instant.  And when will this happen, and how long will it go on? Questions I cannot answer no matter how much I wish I could.

I am experiencing anticipatory grief – that feeling of loss even before a death occurs.  I sometimes feel it must almost be as bad as the actual grief at the time of death.  It certainly consumes me like it is eating me from the inside out.  I wrestle everyday with thoughts of fear, great sadness, worry and I am in a constant state of suspense.  I am in the middle of a living horror movie knowing  it will end but not knowing anything else about the details.

I am on constant alert.  I call it being “hyper -vigilant”.  The constant alert goes to HYPER ALERT when something happens to Mom to indicate there is a change for the worse.  This happened this week.  Wednesday, our caregiver came downstairs to tell me that Mom was in a confused state, unsure of what was happening.  She was also needing her nitro spray often and hours later Mom confessed she had been having pain down her left arm.  I struggled to know what to do about going to work.  Should I go or stay home and watch Mom?  Mom assured me she wanted me to go to work so reluctantly I headed off with phone around my neck in case she phoned.  I silently worked away at the library putting books away  the tears close at hand.  I wanted to run home and hug Mom and make sure nothing happened to her.  Yet, when I left at the end of my shift I was afraid to go home – afraid of what I might find.  Constant limbo, constant suspense, constant alert.

Mom has been with me for over 3 years now.  3 years of living in limbo.  Three years of not knowing when or how.  It wears you down and after a session of being in HYPER ALERT I just grind to a halt.  Managing what I need to do for Mom is all that gets done.  The rest of the time I am in my easy chair rocking, rocking….  trying to get back some semblance of normalcy, a daily simple rhythm again.  It may take days to get to this point.  And then in the facade of normalcy I wait…  wait on tenderhooks for the moment something happens again to send me hurtling back into HYPER ALERT.

Being autistic does not make this any easier.  In fact, it makes this life much more difficult.  We like order, we like sameness, we like predictability.  I live with none of this and it wreaks havoc on my body and mind.  When I worked in the school system,  I worked with one young autistic boy who used visual aids extensively.  He had pic symbols across his desk to outline his daily routine.  Preciseness, predictability and knowing what was going to happen next determined his whole emotional well-being.  I made sure his symbols accurately detailed his day, I gave him 5 min. warnings when things would shift to the  next symbol.  I did all the things I needed to do to keep this boy on an even keel.  I even had a magic card – the CHANGE card.  I would quickly switch it in if there was an unexpected change in the day and then talk about the change with him.  Most times the change went smoothly with this magic card.

I WANT THAT MAGIC CARD!   I want someone to hand me the CHANGE card when something is going to change in my day.  But I don’t have that magic card and neither does anyone else for me.  There are no warnings, no alerts across the TV screen, just this sickening sense all the time that my whole life can change at any moment and I can’t do a thing about it.

Grief – we think of grief when someone dies.  We don’t think of grief before someone dies.  But it is just as real, just as potent, just as relentless. It puts your life on total hold.  It’s called anticipatory grief.   Harriet Hodgson wrote an article entitled, “Why is anticipatory grief so powerful?”  You can probably google it but it was on http://thecaregiverspace.org.  I leave you with a quote she says, “If sudden death hits like an explosion, knocking you flat, then a slow decline arrives like a glacier, massive, unstoppable, grinding you down.”

I am out of strength.  I am spent totally.  But I have a God who gives me the strength that I do not possess to keep going day after day for as long as necessary.  His power is made perfect in my weakness.  And as long as I have my beloved, precious Mom with me I know my God will carry me through what I have to go through.  He does not promise to dispel the despair we suffer but he does promise to walk through it with us.  He is my ENOUGH when there is no answer, when there is no predictability and when I want to quit.

Time – precious thing that it is, keeps ticking.  The angel in my photo at the top is holding onto a clock.  Only God knows the time Mom has here on earth.  We watch the clock sometimes wishing it were over and at the same time wanting time to go on forever.  That’s anticipatory grief.  There’s no” time timer” ( a special clock to use with autistic kids)  here to see how much time we have left.  Each moment with Mom is a precious moment.  Today I gave her a bouquet of dandelions.  Their bright yellow bobbing heads the ultimate mother’s bouquet from her dear child.  Will I ever have another chance to give her this precious little bouquet?  I don’t know but I’m not taking a chance on time stealing my opportunity.  You really do live as if each day is the last one.  I live this out in real time but this story could happen to any one of you.  A loved one could die in an accident or have a massive unexpected heart attack.  I appeal to you, no matter what you do remember life is fragile.  Despite going through this living hell of anticipatory grief I am still thankful that I at least get to go through it knowing I can make a difference in the time I have.  Make sure you make a difference in the time you have with your loved ones.

Easter -joy and fear

I LOVE EASTER!  I have so many wonderful memories of Easter as a kid at my grandparent’s home.  In fact, those are the only memories I have of my grandparents.  Grandma’s geraniums with their prolific blooms lining the windowsill even today brings me wafts of their earthy smells to my senses 50 years later.  Getting dressed for church with my new Easter hat and little white gloves and a chocolate bunny joyously discovered at the foot of Grandma’s brass bed lined high with her quilts.  That chocolate bunny, I swear, was almost as big as I was.

And of course, Easter means so much to me spiritually – a risen Christ!  I still get goosebumps every Easter Sunday when we sing “Christ the Lord has risen today – Hallelujah!”  It is my all time favourite hymn.

Mixed in with these wonderful memories and traditions are some very sad times from the last few years.  Two years ago on Easter Sunday my Aunt Marion died suddenly.  Then last year on Easter Sunday my Uncle Bob, her husband, joined his sweetheart in Heaven.  A strange but touching story, certainly filled with much sorrow but also tinged with a wisp of everlasting love and hope.

So it was as Easter approached this year, my logical, mathematical, autistic mind that thrives on making sense of the world through finding patterns started anticipating that the pattern would just continue.  Mom, my uncle’s sister, would follow suit and would go to Heaven on this Easter Sunday.  To you that may seem totally illogical but to my mind the pattern made perfect sense.  So as Easter got closer and closer my fear of losing Mom got stronger and stronger.  By Easter Sunday I was gripped with overwhelming fear that I would lose her sometime on that day.

For many of us with autism,  patterns are what help make sense of our world.  Our need for sameness, for predictability helps sooth our anxious thoughts.  Much of the time I convert activities, thoughts etc into mathematical – like formulas that will always ensure a predictable outcome.  Unfortunately, in this world, the word out is that “change” is the only thing that is predictable.  Try as I might I cannot control my world.  And unfortunately, for us as autistics, our need for patterns can cause great anguish like in this case, rather than sooth us.  It’s a double bind sometimes.

I must say that as I woke the day after Easter and Mom was still with me I was overjoyed.  This was one time when I sure was happy my patterns did not follow their supposed course.  What relief!  What joy!  To know that I still had Mom with me was the best Easter gift anyone could ever give me.

This Easter the dreaded pattern was broken.  I can relax now until some new pattern of my mind finds its way into my life.  It’s funny because Easter is all about breaking the pattern of humanity.  Christ died so the pattern of death is broken for all time.   Believing in Jesus, brings us life forever in heaven with Him.  And that’s a pattern that is written in his blood and death on the cross.  NOTHING can change it.  So I leave this Easter behind knowing I still have my Mom and knowing that the promise of life everlasting will never be broken.  My patterns may come and go and be broken over and over but God is the same yesterday, today and forever.  He will never change.  Wow!  That’s pretty cool to my autistic mind.  HE HAS RISEN.  HE HAS RISEN INDEED!