My mom died a week ago. Such a short sentence for such a complex reality. There were so many times growing up I felt like a motherless child and so wanted to like the song that sings about that but now I really am one.

It wasn’t an easy time we had growing up for many reasons. My mother was a turbulent and troubled woman, shaped by an extremely early marriage to a very domineering and difficult man. She did her best at times. Or I suppose all of the time she did the best she was capable of at the time but sometimes that best was so painfully short of the mark it’s painful even now.

There is a subset of the human population that is blessed with a gift for denial so deep that having made up their mind something didn’t happen they can come to believe their version of the truth and live it. I saw my mother do this with many things over the years but the one people have wondered the most about has been my autism.

The way my doctor explained it to me when I was 18 and had been hospitalized for the first time making him seek access to my medical charts as far back as he could get it was normal for parents to be advised to forget about it once certain goals had been met (basically they knew you were not mentally retarded and your speech was okay) . You were labelled with residual autism but it was never to be spoken again or risk your backsliding into preferring to spin mad circles in your big wheels for hours on end, or stacking your pennies over playing with people or something more appropriately toy like.

No one may have ever followed that advice better than my mother. Every so often I caught a hint my parents still had some of the same concerns but the “A word” was not spoken. When we moved to BC at 12 and I not only wasn’t able to make friends but was relentlessly bullied there were many hushed conversations.

The next summer the girl who had been my best friend in the last subdivision we lived in in Calgary summered across the lake from us. I had the easiest babysitting job ever that year as it mainly involved sitting in a boat and spotting for a former professional water-skier while making sure none of his kids fell out of the boat. We skied across the lake and I swam in to fetch my friend, and my employer dropped us off on our beach.

We played Masterpiece in the basement as my friend was particularly fond of the art auction phase and had a phrase to go with it that I remember to this day. It was the best I had felt in almost a year. I heard my Dad come in and could hear some surprise in his voice and came up the stairs to fetch drinks for my friend and I to watch his face fall a bit as his statement that it was almost as if I was playing with XXXXX again was answered by my Mom’s statement I was. As I emerged whatever other intense discussion would have followed evaporated of course.

Although in those years concerns about my social life, my functioning and so on would get expressed at times nothing useful was ever done to re-mediate anything. To do so would have been to open the wound of my being defective in the first place as that’s the message I absorbed in my much younger years.

I don’t know if anyone ever tried so hard to not be defective. Probably some have but nothing I ever did was the secret to what everyone else could do so easily. Times were not easy for my parents and we went through many grim things which I will leave out of this for the moment.

In grade 11 I wound up in an unofficial foster care situation. A very caring man who was a teacher at my school and his wife took me in when enough was discovered that my removal from my family was certain. Everyone felt throwing me randomly into a very broken foster care system would be my undoing and so I went for a time to stay with this teacher and his wife.

I was still walking up the stairs, my pseudo foster mother was asking me what I liked to eat and questions like that. Questions I had not been asked in my life ever and couldn’t really work out why she cared. I was accustomed to eating what we had to eat and that was that. In the context I had at the time I thought this concern about my likes and dislikes and potential allergies was very odd.

One might be able to predict with all that I left out that I would wind up estranged from my parents and I did. For many years my doctors felt no contact with them was best and I do think I did need that to heal from everything I didn’t mention. My mother was first diagnosed with cancer just before I cut of connection with them completely and I got a lot of “your poor dying mother” guilt ladled on me but I did what was necessary to make my peace with the life I had so we could have a relationship at some point however limited it might be.

We did get to a point where I could indeed go and visit my parents. It was never free of stress by far but my mother and I had some good times all the same.

5 years ago the cancer that had been assumed to be beaten came back with a vengeance. Something miraculous happened those 5 years. It had started earlier but sped up considerably. My mother started to become the sort of mother I hadn’t known existed when I was young. When I was coming for my visit she was keen to have me dictate what I wanted to eat that I wouldn’t make for myself. She started to send me home with things to heat up and so on. I tended to visit in the summer and as the years between my first stop over really in the company of my brother lengthened the time I could manage also did. Two weeks in the summer started to be fairly routine and sometimes at Thanksgiving or Christmas.

The world regards her courage as being tied into her long fight with cancer but is that courage? It’s true she seldom complained but it wasn’t a battle she chose. In my own mind her real act of courage in recent years was to actually confront in some way the mother she had been and to change that. She wasn’t much into talking about it although sometimes expressed regret for something she didn’t do but every visit, for the parts she controlled anyway, was better. To me it takes more courage to confront things you could have done differently but didn’t and what those things cost you and choose to change than to battle a disease that will claim so many of us. It’s true you get to make some choices even in a fight you didn’t choose about how you go about it but to tackle something painful head on is for most people it seems harder than charging into a battlefield.

She got really angry at my father back in July when I had had a heck of a time tracking down my brother’s phone number for her so she could phone him. I spelled out to her something I had never dared say about how that particular brother was more vulnerable to how our father treated him for whatever reason but that I thought it made it hard for all of us to have a relationship with her.

It was clear she knew that. My father enquired what we were talking about and she spelled it out for him and atypically for him his reply was very mild. In my entire life until that moment I had never really seen her stand up that way to him. There would be the occasional look or a shouting match but things inevitably ended in a draw. Not his quiet monosyllable in Danish that acknowledged he heard and understood and even accepted the truth of it, but apparently had nothing to say about it.

We all went there in December and had a few days together and it was better than one might dare to expect which is fortunate as none of us were able to make it to her bedside in time to say any other goodbye.

I was calling her almost every day the last few months. We had always respected the line about actually crossing the line and uttering the dreaded “A word” but for years already when my mom spoke to me about myself she would speak as if she understood completely how important some things were to me. I was bolder and bolder in how I spoke about my life and she did not yell or deny it but still there was a line I felt was inviolable without causing her pain.

I had as most people know a very difficult year. Well face it we are heading into difficult month 15 now but as part of that of course we wind up seeing a lot of doctors, and having a lot of professionals in and out of our lives. My parents had always previously spoken of me as sick. That being more palatable and I do have horrible depressions co-morbid with my autism although there was a long spell between my last one and this horrible one.

A few weeks ago I said my doctor wanted a new reassessment of me so he could get services more appropriate for my condition. For the first time since I was very young although she did not utter any word starting with a it was clear my mother wasn’t denying it anymore. She said, “I hope they don’t think you are crazy because you are not crazy.” Very firmly.

I said: “ I know Mom. Don’t worry they don’t. “

To which she replied. “Good”

That will be all I ever have from her to say whatever it was meant to say I guess. I know from how she treated me in the last years of her life she had comes to terms with the person I am but communicating how different I am from other people was some last taboo.

I searched her room for some last communication from her. There were things that suggested I had been on her mind in those last weeks of her life. She had added to my previously infamous 3 page baby book, indeed she had created a second album that I did leave with my Dad although it was primarily pictures of me that I had not seen.

People talk about autism acceptance a lot but the fact of it is I spent much of this year beating myself up for the way my autism so catastrophically derailed my life at a time when my mother needed to know I would be okay. I couldn’t go to her this summer. Will never sit on the beach with her again. Never coax her into the water with assurances that it is warm in years when warm is late to come. Never watch her own unique way of swimming from further out in the lake.

My acceptance of it is a not a done deal but a continual process not that different from my mother’s although free of the denial component for the last two dozen years. So many times I have wished I could have been the daughter my mother dreamed of when she tried so hard to have me and then to keep me viable.

Of course acceptance in any relationship isn’t a one time thing is it? I sit and struggle with the pain of wishing my mother could have reached the point she did sooner, or that I could have been stronger and not collapsed so completely as a result of change that I could have been with her this summer. I too would have many times preferred almost any other mother and that was fair enough for the times I thought those thoughts. I suppose in fairness the same might be said for her. That many other daughters may have been more in line with what she had in mind still in the end she was courageous enough to change her ways. She never spoke of the changes or what had driven them. People may speculate awareness of her mortality but I think it would have come nevertheless.

So I sit, and I cry and I miss my mother. The pain and the hurt of many years do not get completely erased by the seasons in the sun and sand and water but they fall into a different context for me. They make me appreciate the act of will it is – and always is to be a better mother to me as I chose to spend the years of work it took to be able to be a daughter.

I went into it all with low expectations but my mother far surpassed them. The love between a parent and a child is a bit of a given but that love in action is not always apparent. In the end we had that.

In the past year when it seemed clear to me her time was near. I sometimes remarked because I feared this very day that this improvement of hers in her mothering would make all this so much worse in the end. Your mother only dies once thankfully so there is no contrasting how it might have seemed if she had remained as she was through much of my life about some aspects of my being but now that my fear has come to pass I think I was wrong. Yes it hurts more I suspect because I have more to miss. I have lost something enjoyable and warm. However it could be that to have lost a mother without ever getting to the stage where the things I did in the end, experience were a given would be so much worse.  I’ll never know.

I love you Mom. Your memory is a blessing and I will remember you in every glint of the sun on the water and each time I glimpse a beach.