My online world is so full, so varied, so fulfilling that I sometimes forget where I have last spoken, visited, written.
My outside world is so challenging, so filled with time slots already promised weeks ahead of time, so ... lived, that I sometimes forget that you have not lived it with me, that you have merely waited for news, patiently and somtimes not so patiently.
My inner world is growing. Still an infant, still vulnerable and fragile, yet it exists where a year ago there was the chaos and pain of birth.
At the beginning of January, we were filled with hope for a quieter, calmer year. Zack had been home for Christmas more successfully than ever before, Kesia was in therapy and Tom was doing well despite a small operation on the horizon.
Thanks to Maman, Nick and I were able to have a holiday together - a wonderful week at Center Parcs. We found each other again - the things about the other that made us best friends, that made love grow strongly from the roots up through to the shoots, branches, leaves. Words are poor expressions of the kind of gratitude we still feel towards her and Papa, who tolerated the absence of his own love and the silence of his home in order to give us the time and space to "be".
And here we are, in June. Slightly breathless, dizzy from the turbulence of life, but living nevertheless. And despite the pain and sadness that still pervades, I think that we are living well.
February proved to be a little more exciting than we had expected, as Tom's operation was followed by a nasty infection. He is now doing well, and thrilled that "my balls are still here" each evening! Growth hormone treatment has been effective so far, but has caused some vomiting it seems. So we are enjoying a hiatus while we do some important checking. In the last few days, I have felt the strength to trust Tom and myself with his eating, and have not used the tube at all. I do not know how long this will last, and find myself accepting that lack of knowledge... a strange feeling for me, but again a feeling that I am in small small ways, learning to live well.
Zack has made far reaching progress at school. He is truly happy there, and has made his peace with class work - to a great extent! I am so proud to say that he sat his SATS tests, only leaving one unfinished. He is tolerating new students much better and is able to bring back much of what he has learned when he comes home. Nick and I, on the other hand, are enjoying the freedom of holidays - knowing that it is alright to let him enjoy his games and television, that holidays are in great part about letting go of the structure and strictures of school.
Kesia has taken centre stage this year. It is increasingly clear that she has Asperger's syndrome, and that she finds the world of communication even harder than Zack does. Her therapy has not yielded the results we were hoping for, and Nick and I have had to start the fight anew - for recognition, assessment, diagnosis and eventually educational support. We are all so lucky to have the Greville School behind us. She receives constant and nurturing support there, but we need to look ahead to secondary school which is increasingly looking very daunting for her.
She writes the most wonderful stories, and her author's voice is quite unique and musical. She has also taken it upon herself to learn to play the piano. Using my old piano book, she has been teaching herself (she dislikes and rejects any teaching) and is playing beautifully. With the dedication and perserverance that any parent of a child with ASD will recognise, she is working through the book, moving on to the next piece only when the current one has been mastered. I try to help her without her realising - what a wonderful opportunity to stretch my teaching muscles!
Me! Is becoming. And a lot of the time, that is enough.
My outside world is so challenging, so filled with time slots already promised weeks ahead of time, so ... lived, that I sometimes forget that you have not lived it with me, that you have merely waited for news, patiently and somtimes not so patiently.
My inner world is growing. Still an infant, still vulnerable and fragile, yet it exists where a year ago there was the chaos and pain of birth.
At the beginning of January, we were filled with hope for a quieter, calmer year. Zack had been home for Christmas more successfully than ever before, Kesia was in therapy and Tom was doing well despite a small operation on the horizon.
Thanks to Maman, Nick and I were able to have a holiday together - a wonderful week at Center Parcs. We found each other again - the things about the other that made us best friends, that made love grow strongly from the roots up through to the shoots, branches, leaves. Words are poor expressions of the kind of gratitude we still feel towards her and Papa, who tolerated the absence of his own love and the silence of his home in order to give us the time and space to "be".
And here we are, in June. Slightly breathless, dizzy from the turbulence of life, but living nevertheless. And despite the pain and sadness that still pervades, I think that we are living well.
February proved to be a little more exciting than we had expected, as Tom's operation was followed by a nasty infection. He is now doing well, and thrilled that "my balls are still here" each evening! Growth hormone treatment has been effective so far, but has caused some vomiting it seems. So we are enjoying a hiatus while we do some important checking. In the last few days, I have felt the strength to trust Tom and myself with his eating, and have not used the tube at all. I do not know how long this will last, and find myself accepting that lack of knowledge... a strange feeling for me, but again a feeling that I am in small small ways, learning to live well.
Zack has made far reaching progress at school. He is truly happy there, and has made his peace with class work - to a great extent! I am so proud to say that he sat his SATS tests, only leaving one unfinished. He is tolerating new students much better and is able to bring back much of what he has learned when he comes home. Nick and I, on the other hand, are enjoying the freedom of holidays - knowing that it is alright to let him enjoy his games and television, that holidays are in great part about letting go of the structure and strictures of school.
Kesia has taken centre stage this year. It is increasingly clear that she has Asperger's syndrome, and that she finds the world of communication even harder than Zack does. Her therapy has not yielded the results we were hoping for, and Nick and I have had to start the fight anew - for recognition, assessment, diagnosis and eventually educational support. We are all so lucky to have the Greville School behind us. She receives constant and nurturing support there, but we need to look ahead to secondary school which is increasingly looking very daunting for her.
She writes the most wonderful stories, and her author's voice is quite unique and musical. She has also taken it upon herself to learn to play the piano. Using my old piano book, she has been teaching herself (she dislikes and rejects any teaching) and is playing beautifully. With the dedication and perserverance that any parent of a child with ASD will recognise, she is working through the book, moving on to the next piece only when the current one has been mastered. I try to help her without her realising - what a wonderful opportunity to stretch my teaching muscles!
Me! Is becoming. And a lot of the time, that is enough.
RSS Feed