Falling apart

I'm sorry to come and share such terrible news, but feel it will be cathartic to get it out.

In my last post I mentioned that things her had gone from mad chaos to madder chaos! Part of that was driven by the lovely news in October that we were expecting our third, and much wanted, baby. Ironically, I had just increased my working hours to two days a week, with the intention of taking on a third day in the New Year. Life was about to get complicated again. We talked and worried about the future - what if James regressed again when the new baby arrived, how would I cope with three children, what would the summer holidays be like, juggling a new baby and James (as well as Bea), how would Bea cope - she's already playing second fiddle to James and a new baby would possibly sideline her even more. And we made plans for the future, where the baby would sleep, what new car we would buy, sorting out all the clothes that I've hoarded in the loft, planning names, excitement at the prospect of a summer not working and looking after my lovely children. The future looked bright and exciting, as well as challenging.

Three days ago our world fell apart. I was 12 to 13 weeks pregnant (my dates are a little uncertain and whilst I had pushed for an earlier scan it never happened) and went to my nuchal fold scan. We had agreed that if the nuchal fold was suggestive of any abnormalities I would go forward for further testing. We never anticipated what happened when I entered the room. I took Bea along, and will probably regret that for the rest of my life. I wish I hadn't allowed her to experience what was the most painful morning of my entire life.

There were two sonographers in the room, the trainee and her supervisor. The trainee started the scan and David and I were beaming with excitement. We were about to meet our new baby. At first all she could find was my (very full!) bladder, then there was a gestational sac. There was something inside it, but I wasn't convinced it was quite what we should be seeing at this stage. The supervising sonographer took over and as soon as she put the probe back on my abdomen I knew what we were facing. She asked me if I had experienced any pain or bleeding and I felt like saying "not until you asked me, and now I am breaking in two". She asked me to empty my bladder so I could have an internal, and I went to the loo all composed and serene as if it was happening to someone else. I'm still not sure if David understood at this point or not. The internal showed the sac and a collection of cells but no heartbeat. I told her I could see there wasn't a heartbeat and I knew what had happened. I needed to know when my baby had stopped growing and she said around 9 or 10 weeks. I got dressed and was taken to a side room, where I shed a few tears and then composed myself for Bea's sake.

The next hour was the most horrific of my life. We went up to the Gynaecology ward, and waited, and waited, and waited. There were no tissues, there were posters about Chlamydia screening, there were other women in there laughing and cuddling their partners (I now know most of them were waiting for early scans because of bleeding or pain) and I just wanted to die. I felt as though my life had come to an end, that it would never be the same again. I just wanted to close the book, and reopen it at a new and happier ending. I wanted them to be wrong and to still have my baby inside me. I finally saw a nurse and she suggested I should just let things happen naturally. Or I could take some drugs that would induce a miscarriage. But I want the possiblity of some answers, and have pushed to have an operation as that way histology can be performed. If I can find out that there was some sort of reason for this to happen I will feel more at ease. Perhaps it was a genetic defect or an infection that meant the baby couldn't survive. Then I can stop torturing myself with all the questions I'm currently asking myself.

Think of me on Monday, when I will be spending most of the day at the hospital. I don't know how it will go but I will come back and share with you as soon as I feel able.

Every cloud.....

They say truth is stranger than fiction and I know I couldn't have made up today's events. I think it's a fact of life that most children will sustain an injury that requires a trip to A&E at some point in life, but I always expected that it would be James I'd take first. He has no awareness of danger (his latest trick is to run away from us down the street when we take him out of the car in our drive) and is quite hypotonic (floppy) and so tends to trip and fall a lot. He has a high pain threshold and won't tell us when he's in pain (I can remember an incident when he was less than two when I found his toenail bleeding and hanging off when we were in a park and thinking how brave he was - this was before his formal diagnosis, and is just one of many little incidents that show me there were very subtle clues there before he "declared" his autism). But it seems that despite being the second born, Bea has found yet another "first" to outperform her older sibling - yes, she is the first of my offspring to sustain a broken bone. In fact, she's beaten me - I think my first fracture was when I was about 3, but I hope she doesn't follow in my tracks and continue to break another 10 plus bones. My last fracture was only about 6 months ago - I wish I could say I'd been running to save James from drowning or some such other heroics, but to my shame I was late on the nursery run and tripped over my own foot! Bea's story isn't particularly glamorous either - slipped on the kitchen floor, put her arms out to save her fall and broke her clavicle (collar bone). Considering it's been nearly two years since I last saw a patient, I was quite impressed with myself for identifying the cause of her screaming - even Mini Eggs wouldn't console her. My local A&E were very efficient (I did mention my training which helped bypass at least one doctor, I think) so we were out within 2 hours, having seen the orthopaedic consultant (I think I must be ageing rapidly - he looked far younger than me and I'm a long way off my consultant post!). She is currently tucked up in bed, dosed up on painkillers and looking like a princess - I've put a double duvet under her to cushion her as she's been screaming in pain all day.

It's events like this that really bring home how hard life with James really is. I think I'm a realist and know how much I do but it's so easy to get so involved in living your insular life that you forget how much you're adapting to your situation. There is no way I could have taken James with me to the hospital as he would never have coped there but equally I'd have found it impossible to leave him with anyone. Just as well it was the weekend, although my husband's plans for a morning of DIY were scuppered. Then this afternoon it's dawned on me how hard it will be to take the two of them on the nursery run - it's incredibly painful for Bea to be picked up and put in her car seat, which we need to do four times a morning. I can't ask anyone else to take James to and from nursery either, so I have had to ask my mum to come and visit to help out. Ironically, I have been exploring the possibility of getting the LEA to provide transport one day a week for James so I could go back to work - they've refused on the grounds we live too near (there's one direct bus that goes twice an hour and the times mean that Bea and the nanny would spend more time waiting for the bus/on the bus than at home). This is a rather dramatic way of getting transport though!

James was very "high" today - I am sure he could sense we were upset about Bea and the screaming didn't really help. Plus, he loves being outside and finds being stuck indoors on days like today really frustrating. When he's high he's really hard to engage with, running back and forth continually, spinning round and round, flapping and stimming and he finds it impossible to concentrate on anything. We tried most of our usual "tricks" but he wasn't having any of it. I was very glad when supper time came around as it meant bedtime (and with it a bit of peace) was round the corner. As Bea can't lift her arm, I gave her her glass of water with a straw and did the same for James. For the first time ever, he used the straw to blow through, something we worked on and gave up on last summer. So I brought out a bowl of water and washing up liquid and we spent a magical ten minutes blowing bubbles, splashing, popping, and the odd bit of drinking. So every cloud really does have a silver lining.

The man called U.N.C.L.E

I realised this morning that I hadn't even mentioned that my brother had come to stay this week. It has been over three years since he last stayed with us, although I have been back to stay with my parents many times since then. When he last visited us, I had an 18 month old happy, active, chatty toddler who doted on his uncle and showed no signs of autism. How much has changed in three short years....

James has always been quick to seek out contact with male carers - he used to run up to men in the park, pointing to himself, saying "James, me James, me Jamie!" and look straight into their eyes. Many of my tube journeys were spent hiding my face as James sought out eye contact with men who were trying to mind their own business! If it was a particularly good looking man, I'd flash him my best smile but more often than not it was some rather unkempt, old man with several bags full of goodness knows what. Often there would be delighted comments on how charming he was and how happy he seemed. Nowadays I still get comments on his looks but more often than not I can feel people looking and wondering why he doesn't talk to them, why he's wearing a backpack with reins, why he's screeching and tsking to himself (these are his stims which help to calm him). If they start up a conversation I am usually quite open about his autism but it's not always appropriate to talk about it. Anyway, I digress. The point I was trying to make is that he has developed a strong relationship with all the male members of our family - my brother and both of his grandfathers. He is always pleased to see my mother but his face lights up when he sees my father. So you can imagine how excited he was to see my brother.

Having an extra pair of hands around in the daytime during half term was a godsend. I was able to relax a lot and Jason really bonded with both children. The last time he saw us was in August, and Bea was only just learning to walk and had a handful of words - he was most taken by the chatty, jumping bean she's become. As for James, he couldn't get enough of his favourite uncle and they had plenty of fun running round the garden, playing tickling games, doing jigsaws and basically just hanging out together. We took the children to Cassiobury Park to the lovely playground there and to ChaChaCha, a borough supported cafe in the grounds. I think Jason found ChaChaCha a bit overwhelming - for the first half hour he was the only male in the packed cafe, and the noise was a bit much for him. He has told me that the last few days have been exhausting and fun but have put him off having children himself - I hope that he rethinks this as he will make an excellent father (don't tell him I said that - it's an unwritten rule that we never compliment each other in our family).

Not only did he help me out during the day, but he and David have managed to paint the playroom! Yay! We just did a quick two coat job with the Dulux Endurance range (we have developed a bit of a thing for Farrow and Ball paint but I didn't think it would stand up to the (mal)treatment it would get in the playroom) and the room looks so different now. It is bright and light and actually quite pleasant to sit in. I know we'd never have got round to it without the help from Jason, so let's hear it for the best uncle I know.