You never know what life will throw at you! In 2004, my stable life with two healthy daughters was rocked to the core when I gave birth to William, a little boy with complex needs. Life was never the same again. We've come through living in hospitals, a small bowel transplant and coming to terms with Asperger's Syndrome and I'm finding life all the richer for it.
Sunday, February 22, 2009
Life is there for the taking
Playing on the quiet side of the playground
Learning what to do with an egg
A walk in the park
Cuddle with Big Sis
Enjoying the winter sun in the garden
Singing and dancing to 'Mama Mia' (with two sisters, you just have to join in with these things!)
Joining in with family meal times (even it not eating it yet)
Rediscovering long forgotton about toys
Once again, the story is in the pictures. This was our first weekend together as a family since September, and there were precious few of them before that. It has been lovely. For the first time since William was born we are able to sit down together at meal times. It was always a case before of doing the TPN and then rushing to try and get something cooked for the girls or giving them something already prepared whilst I was doing TPN. William's bed time routine, including the TPN and IV drugs used to take about an hour. Now, we can sit down at 6.30 and eat before I do William's feed and medicine and get him to bed. William has a small plate of whatever we are eating. He plays with it and is learning the skills of eating with a knife and fork. I am sure he will eventually begin to have a taste. He does fully join in with the social aspect of the meal and that is equally important.
We are not yet allowed to take William on public transport or anywhere that lots of people will be. As it was such a lovely day on Saturday, we did venture out for a walk in the park and even managed to find the quiet side of the playground. A couple of children did come on over to join in but I explained things to their parents so William could play for a little while. He didn't keep them from their game for too long. William was really nervous of falling. He does lack some of the confidence he used to have when playing on swings and being put on other toys in the park. It is not surprising really after all his body has been through.
William has been inseparable from his sisters this weekend. He has really missed them. We have all missed each other. The girls have grown up loads, especially Hope who will not leave her bedroom without a full face of make up anymore. I have missed so much of their lives and want to hold on to every minute now. They have been bought up by Mum and Dad as much as me over the last three years and I know that they will always have a special bond with them, beyond that of Grandma and Grandad now. I would never have been able to get through these years without knowing that the girls were safe, happy and being looked after with them. Much as I missed them, I knew they were OK and in the very best hands.
Hope, Ellie and I started to make up for lost time yesterday with a girle night complete with Chinese takeaway, chocolate and the sing-a-long version of 'Mama Mia'. We had a great time. I watched that film in our room in the hospital and found it a bit lame in the story line and more of a vehicle for the songs. I came away thinking I would rather have listed to an ABBA CD. I now know that the film comes alive when watching it with the girls you most care about and having a good old sing and laugh. It is our film of the moment and we have also downloaded the soundtrack. Even William joins in the singing and dancing and I am enjoying singing out loud whilst cleaning and tidying up - something I really missed in the hospital. It is so good to be doing the normal little things in life again.
We ended the weekend with a roast. The last two times I have tried to cook a roast, the food ended up being wasted as we ended up phoning ambulances before the chicken was cooked. Likewise, so many fridge loads of food have been thrown away after being admitted to hospital that I had begun to shop daily to avoid the waste. I am slowly beginning to relax and not feel like the next emergency must be due within the next few days. There will be ups and downs and William will have emergencies in the next couple of years but there is going to be a lot of stability and weekends like this in between. Life is there for the taking again.