I know all about the grief cycle - we studied it thoroughly enough during our psychology and psychiatry training at medical school and I have supported various families through their losses, both in the neontatal period and with older children. So here I am, in the midst of my own experience and all I feel is empty. Perhaps because at the moment I don't feel there's any closure, I almost feel distant from the whole experience. If I hadn't been for my scan on Wednesday I would still be pregnant (in my head, at least). I would be planning my future with my new baby, and thinking about all the logistics of adding to our family. Instead I'm in limbo, neither pregnant nor actually NOT pregnant. I'm hoping that my operation tomorrow will mean I can start facing my future again. Planning a very different future, but still a future.
I'm staying strong at the moment for the family. James has no idea what is going on and is going through a rather challenging time at the moment. His current favoured activity in the car is to undo his seatbelt and wind down the window, throwing himself out, Dukes of Hazzard style. I'm hoping a friend is going to be able to lend me her spare five point harness car seat suitable up to age 8, as it's getting quite dangerous now.... He's very hyper at the moment too, and perhaps that's because I don't really feel up to spending time with him. I feel so guilty about that and David is managing the brunt of his difficult behaviour but I need to look after myself at the moment.
The weekend has actually been easier than I expected. I had a stall at Duck Pond Market selling my crafty bits and bobs. I've been going there since April, and this was my most successful weekend. The scarves went down very well and my hand dyed yarn is proving very popular. I'm guessing I'll be back to dyeing over the Christmas break, to restock. I had avoided dyeing whilst pregnant as there is a risk of respiratory difficulties with inhaling the dye powders. So now I can do as I please! The other crafters at the market are amazing people - I have shared my difficult news with them and they've all been so supportive this weekend. I wouldn't have got through the weekend without them. I also indulged in some therapeutic spending, which was lovely.
Think of me tomorrow, my friends. I will be waiting and knitting a therapeutic project to keep my mind occupied. I'm sure there will be a lot of tears and heartache, but it will be the beginning of a new phase, the start of a clean slate, and some sort of closure.
Showing posts with label grief. Show all posts
Showing posts with label grief. Show all posts
Sunday, 13 December 2009
Friday, 13 February 2009
Just how far have I come....
The last couple of days have really brought home to me how far I've come over the last two years. This time two years ago we were spending every weekend dragging ourselves round huge numbers of houses in our quest to find a home for the family. We had just received James' "formal" diagnosis and our flat had sold with a one day "open house" so the pressure was on to find a suitable property. I knew that moving was the right thing for us, we needed more space and the postage stamp sized garden was up a set of precarious stairs so James couldn't even go outside for two minutes on his own.
James has always been drawn to the great outdoors, so our house hunting priority was a house with a good sized garden. I think that we've done well - our garden is around 80 foot long and while it is northish facing, we still get plenty of sun (well, we used to get more but then the neighbours built an enormous extension that steals a lot of sun in summer boo hiss...). But just like the rest of the house, it was heavily neglected and run down and unsafe to leave the children in alone (when I say alone, I mean with me watching closely from the kitchen whilst cooking/cleaning/on the phone, not that I leave my children in the garden while I go out shopping!). We had a complete garden makeover from All Gardening last May, and it was the best thing in the house that we spent money on. The garden has gone from being an eyesore to being the talk of the road and we spent every dry moment of last summer out there (and quite a few wet ones too!). I'm looking forward to seeing the garden blossom over the next few months - spring is well and truly here (I saw snowdrops today as opposed to snow) and we're getting a feel for our garden through the seasons.
Anyway, I seem to have meandered from my point, which was how much things have changed for me in the last 2 years. I think the time around James' diagnosis was perhaps the bleakest in my life. I felt lost in a downwards spiral - I had a 6 month old baby who still needed me completely, and I had just found out my eldest child had a lifelong disability. I felt lost, lonely and scared. Add to that the certain knowledge that I would be leaving my (small but perfectly formed) support group of childminder and friends near our flat when I moved. I had one close friend who had moved nearby to where we were house hunting, but we were going to be travelling very different paths. I was now thrown into a maelstrom of appointments, interventions, training courses, literature on autism, forms to apply for statement of special educational needs, professionals meetings - not the idealised pathway that I had imagined myself travelling as a mother of two juggling life with two children and a fulfilling career. I began to question my abilities - as a mother, as a wife, as a carer, as a doctor, as a friend, as a paediatrician. How was I ever going to cope? What did my life hold for me? What was the point? I just wanted things to be the way I had expected they would be.
It is only now that I see how deeply I grieved for the loss of my son - of course, I hadn't "lost" him in the conventional sense, indeed he was very much alive, but I no longer had the child I thought I had when I held him in my arms through those long, cold December nights. It felt as if someone had stolen him from me and replaced him with a child I no longer recognised, one I had no connection to and one I couldn't understand. But I was wrong - I do and did understand him, probably better than most people, and our connection is very deep and meaningful to both of us. As time has passed I realise that he is still very much the infant I gave birth to, I just didn't know how he was going to grow up. The more time I spend with him and the more I think about his early years, the more easily I have accepted that autism was always a part of him (his poor feeding, his screaming episode the first time we went swimming, the way he didn't really "play" with my friends' children which I initially put down to him not seeing them often, the way he enjoyed the way I read "The Very Hungry Caterpillar" but if someone else read it he turned off because they weren't reading it the "right" way, the way that when I was heavily pregnant I let him spin CDs in their boxes just to get 5 minutes peace, the way his face lit up the first time he went on a roundabout). But the bleak times felt relentless - I cried rivers of tears, I cried anywhere and everywhere - in the park, on the train, at the medical appointments, with friends, with my husband, on my own, whilst watching TV, on the phone. I was terrified of how I would manage once we moved - where would I go with the two children? I couldn't take them to toddler groups on my own as James' behaviour was too difficult to manage without one to one supervision.
Two things changed all of this. My friends on Damsels pointed me towards Home Start a wonderful organisation that provides support and help to parents of young children in a variety of difficult situations. I was able to contact them before we moved and a volunteer was identified for me very soon after we moved. Just that chance of an hour a week with some help for me was liberating. I also contacted the local branch of the National Autistic Society and was very lucky to talk with the local support coordinator who put me in touch with a variety of agencies such as Kids Can Achieve.
So here I am, nearly two years on, finding myself the one who provides support, information and a listening ear to parents who have found themselves on the precipice around diagnosis. What a long road it has been, with a lot of uphill struggles, but I think I am somewhere near to having dealt with my grief and resolving the issues that diagnosis brought up for me.
James has always been drawn to the great outdoors, so our house hunting priority was a house with a good sized garden. I think that we've done well - our garden is around 80 foot long and while it is northish facing, we still get plenty of sun (well, we used to get more but then the neighbours built an enormous extension that steals a lot of sun in summer boo hiss...). But just like the rest of the house, it was heavily neglected and run down and unsafe to leave the children in alone (when I say alone, I mean with me watching closely from the kitchen whilst cooking/cleaning/on the phone, not that I leave my children in the garden while I go out shopping!). We had a complete garden makeover from All Gardening last May, and it was the best thing in the house that we spent money on. The garden has gone from being an eyesore to being the talk of the road and we spent every dry moment of last summer out there (and quite a few wet ones too!). I'm looking forward to seeing the garden blossom over the next few months - spring is well and truly here (I saw snowdrops today as opposed to snow) and we're getting a feel for our garden through the seasons.
Anyway, I seem to have meandered from my point, which was how much things have changed for me in the last 2 years. I think the time around James' diagnosis was perhaps the bleakest in my life. I felt lost in a downwards spiral - I had a 6 month old baby who still needed me completely, and I had just found out my eldest child had a lifelong disability. I felt lost, lonely and scared. Add to that the certain knowledge that I would be leaving my (small but perfectly formed) support group of childminder and friends near our flat when I moved. I had one close friend who had moved nearby to where we were house hunting, but we were going to be travelling very different paths. I was now thrown into a maelstrom of appointments, interventions, training courses, literature on autism, forms to apply for statement of special educational needs, professionals meetings - not the idealised pathway that I had imagined myself travelling as a mother of two juggling life with two children and a fulfilling career. I began to question my abilities - as a mother, as a wife, as a carer, as a doctor, as a friend, as a paediatrician. How was I ever going to cope? What did my life hold for me? What was the point? I just wanted things to be the way I had expected they would be.
It is only now that I see how deeply I grieved for the loss of my son - of course, I hadn't "lost" him in the conventional sense, indeed he was very much alive, but I no longer had the child I thought I had when I held him in my arms through those long, cold December nights. It felt as if someone had stolen him from me and replaced him with a child I no longer recognised, one I had no connection to and one I couldn't understand. But I was wrong - I do and did understand him, probably better than most people, and our connection is very deep and meaningful to both of us. As time has passed I realise that he is still very much the infant I gave birth to, I just didn't know how he was going to grow up. The more time I spend with him and the more I think about his early years, the more easily I have accepted that autism was always a part of him (his poor feeding, his screaming episode the first time we went swimming, the way he didn't really "play" with my friends' children which I initially put down to him not seeing them often, the way he enjoyed the way I read "The Very Hungry Caterpillar" but if someone else read it he turned off because they weren't reading it the "right" way, the way that when I was heavily pregnant I let him spin CDs in their boxes just to get 5 minutes peace, the way his face lit up the first time he went on a roundabout). But the bleak times felt relentless - I cried rivers of tears, I cried anywhere and everywhere - in the park, on the train, at the medical appointments, with friends, with my husband, on my own, whilst watching TV, on the phone. I was terrified of how I would manage once we moved - where would I go with the two children? I couldn't take them to toddler groups on my own as James' behaviour was too difficult to manage without one to one supervision.
Two things changed all of this. My friends on Damsels pointed me towards Home Start a wonderful organisation that provides support and help to parents of young children in a variety of difficult situations. I was able to contact them before we moved and a volunteer was identified for me very soon after we moved. Just that chance of an hour a week with some help for me was liberating. I also contacted the local branch of the National Autistic Society and was very lucky to talk with the local support coordinator who put me in touch with a variety of agencies such as Kids Can Achieve.
So here I am, nearly two years on, finding myself the one who provides support, information and a listening ear to parents who have found themselves on the precipice around diagnosis. What a long road it has been, with a lot of uphill struggles, but I think I am somewhere near to having dealt with my grief and resolving the issues that diagnosis brought up for me.
Tuesday, 11 March 2008
On edge
That's me. Always on edge, worried about what James is going to do next and how I'm going to manage. But also, I'm on the edge of James - sometimes I feel so close to him, as if he's invited me to enter his world and really connect with him but so often I'm not allowed quite close enough. As if I am watching through glass, disconnected from reality and distant. Perhaps that's how he feels? The more I try and get through to him the more moments we share with laughter and connection but they're only fleeting and it breaks my heart more than I ever imagined possible. Sometimes I wonder if it would be easier if he was totally disengaged from me, because I wouldn't set myself up to fall down again. And when I fall, I fall hard. My spirit feels broken, my whole reason for being drains from me and I can hardly pick myself up. I have never dealt with rejection very well, and to experience it at this intensity and frequency takes its toll. When I watch James pushing me roughly aside, screaming "no!" forcefully, as I try and offer him a cup of water when he is coughing and crying at night, I just wish I knew what to do, how to handle it, how to stop myself crying and feeling like I am failing him. I wish that autism had never reared its head, and at the same time I find myself wishing that we hadn't seen so much "normality" in James. This time two years ago he was no different from his peers - we enjoyed reading books, singing nursery rhymes and making biscuits together. I was full of thoughts of his future and our future as a family. Fast forward two years and I'm still full of thoughts of his future and our future as a family but those thoughts are no longer full of anticipation, hope and aspirations. Instaed I am full of fear, uncertainty, worry, sadness and grief. For in many ways we have "lost" our son. I don't recognise him in videos or pictures - they are like the memories of long lost relatives, stored to help us remember. I watch them with tears running down my face, just as a mother would mourn her child. Only I still have James. He is still here, he still needs me more than anyone has ever needed me and I sit here, on the edge, wating for the next time he invites me to leave the edge and enter his world.
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