Posts tagged ‘chromosomal abnormalities’

You’ve got a friend in me.

A special request this evening, from my Bronwyn, to write about the good stuff. She has a fair point. That I am broken-hearted, you know. That Baby Daddy is a complete bastard has also been covered and remains unchanged. There are still good things and good people however, and for them I am truly grateful.

While I was away, as I was for three weeks, my Father and Step Mother offered to look after Daughter Number Two for a weekend to give Baby Daddy a break. So, off she went to be spoiled in ways only doting grandparents can. Son Number One had been telling me how much he was missing his brother and sister, and as his respite house was only around the corner from my parents house I suggested he arrange to visit with Daughter Number Two while she was there. The next day I had a call from Son Number One. “Mum!” he said “We are all together!”. He had arranged for Son Number Two and his carers to also meet up at his grandparents, so the three of them could spend time together. My Son Number One, with all his issues – his ADHD, his Asperger’s, his epilepsy, his chromosomal abnormality – had arranged to get together with his two siblings, so they all could spend some time together. And then, as if that was not enough, he called me to let me know that they were all together. Perhaps it is only the parents of other special needs kids who will understand the enormity of this for me. Maybe all parents can appreciate the gift of knowing you have taught your child something valuable, something useful. My Son Number One, who lives in his one step removed from life bubble, reached out to his siblings and brought them together, and then included me in their reunion. I could not be more proud. I am proud of him, and I am proud of me, because whatever my failings my children understand family and they understand love, and that is down to me.

Son Number One’s carer had only nice things to say about him, when I met her today. Similarly, the carers who’ve had Son Number Two both this time and last, a different couple each time, are falling over themselves to care for him again if needs be. I spent two nights with Daughter Number Two before she headed off for an interstate holiday with Baby Daddy today. Both nights she slept soundly and peacefully, and left me with smiles this morning, secure in herself and in her relationships with both her parents. I think for so long I have been caught up in the day-to-day struggle for survival that I have not paid enough attention to the strengths that have been there, both in my children and within myself. There are good things here, as my Bronwyn pointed out, and I should take as much credit for them as I do for the rest.

While I was away I met with Ann O’Neill, director of Angelhands , an organisation offering support to those affected by violent crime. It was a very positive meeting for me on a number of levels. I was relaying to Ann what I saw as one of my failings; that I have taught my children how to survive and not to live. Her response was that some parents did not even give their children that. That I may not be doing as well as I feel I should be, but that teaching my children to survive was not teaching them nothing. I have watched my children over the last two days and have seen their resilience. They know they are important to each other. They know that they are loved. They know how to make the best of a situation. They don’t lie down and give up. Things may not be quite as they expected, or as they perhaps would like, but they get on with it. Perhaps some of this is in spite of me, but some of it has to be because of me and the things that I have taught them. My children’s resilience is a good thing. Their connectedness to each other, and to me, also a good thing. Meeting with Ann O’Neill, visiting the Angelhands office, hearing about the work they do – all very good things. All hopeful things that speak positively of the future.

My friend Bronwyn, a very good thing also. A definite kindred spirit. Everyone should have one. I am so lucky that I do.

For Auld Lang Syne

I have been very neglectful of this blog of late. I really haven’t had the energy. I still don’t but like the rest of my life I am hanging on by the skin of my teeth in order not to lose it all. When we went for the big hospital check up months ago Son Number One was diagnosed with a chromosomal abnormality which has underpinned all the other problems he has had over the years.

As he gets older and his chronological age and ‘actual’ age seem to drift further apart, as he continues to get bigger and bigger and bigger, his behaviour gets harder and harder to manage and contain. At a paediatrician’s appointment last week I was told Son Number One had put on ten kilo’s and grown 6cm in six months. He is now 192cms tall and weighs  82 kg. I think that is just under 6 foot 3. He towers above me. He towers above most people. He is 15 years old and shows no sign of slowing down in growth anytime soon.

We’ve had some pretty bad behavioural incidents over the last couple of months, from a few weeks before Christmas to just last week and my resources are stretched to say the least. Son Number One was in emergency respite for three days last week, just so I could draw a breath and we are looking at longer term options and services with his paediatrician, but it’s been hard, both inside and outside my head.

The whole Holland v’s Italy thing comes to mind ( google ‘holland italy special needs’ ) but it’s not even that. I’m all for embracing the individuality of each of my children, I couldn’t care less if we end up in Holland, but gee, I really want him to have the right luggage to take with him. It has become increasingly apparent that as hard as I try I can’t force him to carry the bags I have lovingly packed for him. He just can’t pick them up.

Naturally super stress in one area of my precariously ‘balanced’ life has had flow on effects in other areas. Son Number Two is becoming increasingly frustrated by Son Number One’s behaviours and my inability to manage them. He has been acting out in an extremely unpleasant way. I took Son Number Two to the beach yesterday, while Daughter Number Two was with Baby Daddy and Son Number One was at Vacation Care. It was nice to just relax and play and it was very beautiful as a bonus! Everything was perfect, the view, the weather, and we had a lovely time together. Son Number Two’s best friend is coming for a sleep over tomorrow, and they will get to spend some time together while Son Number One is at Vacation Care. Then I will hold my breath for the rest of the visit in the hope nothing too crazy happens.

Surprisingly, for me anyway, we had a really good Christmas. It was very low-key and relaxed, which was exactly what I was going for. Baby Daddy was on his best behaviour and proclaimed it the best Christmas he had ever had, high praise indeed! The only thing that could have improved it  for me would have been having the Current Person of Interest present.

Which brings us to New Years Eve ! We flew to the city to see the fireworks. I had booked an apartment with views out over the Harbour and the city so that we had a perfect view  of all the fireworks but were far from the crowds and craziness. It worked really well, Son Number One can get quite agitated by the noise, which this time was dulled by distance. We watched the show from the comfort of our apartment and a great time was had by all. There are two fireworks displays on New Years Eve, one at 9pm and one at midnight. Daughter Number Two was allowed to stay up for the 9pm session, and went to sleep finally at 11.30. The boys were allowed to stay up until the midnight display. It was really fantastic and I’m sure it will not be the last time we do it. As a bonus the Current Person of Interest stayed with us, which was wonderful!

Everything with us is going smoothly, although he still lives far away and the long distance thing sucks. That is not likely to change though and for the moment the positives are still outweighing the negatives.

Juggle, juggle, juggle. The mother’s lament. School starts back next week, which will give me some breathing space and let me resume weekly visits with Nana. Hopefully the paediatrician will be in touch soon with some new directions for Son Number One and there is just over a month until the Current Person of Interest is here again. So, I’m just going to keep putting one foot in front of the other. This too will pass.

 

 

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