Theo in Christchurch turns two in February. He stops running around for food. |
Pania opening her presents on her 37th birthday - our oldest child (Angela) and our youngest (Simon) are helping. |
Evening sunset in Christchurch. |
We were sent pictures of our Auckland grandson, Stanley, who is about 7 months old. He has had some rough ailments to grow through but is better now. |
With his mum, sister Edith and a table their clever dad built them. |
Today we drove back home. Our foster daughter is in independent care now and she comes home for visits regularly. Our children have always just accepted her as their sister, though she came to live with us when she was nine years old. Our daughter helps look after her when she comes on such holidays, and also takes some responsibility in her guardianship. It has been an interesting journey being a father to a child/woman with severe handicaps. She cannot talk. She cannot dress herself. She cannot take herself to the toilet. She can feed herself but the food has to be cut up for her and she makes a mess. She will often make noises and walks slowly with a strange gait. She has specially built up shoes to compensate for scoliosis in her back which shortens one leg. Often too she dribbles. She is a Rett Syndrome sufferer. Her speciality is her smile and her deep brown eyes which look intently into yours. Lately she seems to make a lot of noise, just vocalising sounds to herself as she moves around. It can be annoying. Today driving out of Christchurch dealing with heaps of traffic on unfamiliar roads, I must confess to getting impatient with this constant noise behind me. We stopped at a cafe about halfway home. While my wife ordered food I guided Pania to a table outside a very crowded restaurant. I was very aware that people were staring. Pania was making her noise, and I was guiding her slowly toward the chair holding her arm. People stared! I have learned to just go about our business and not look at the staring people. But this time Pania stared back at a couple at the table next to us. It was as if she was saying to them, "What are you lookin' at?" I tried again and again to distract her, but was only successful when I quietly sang to her ... something even more odd for those close enough to hear. But once food arrived all was well. Our neighbours had something else to do and we could busy ourselves in our coffee and sandwiches and feeding Pania her sandwiches. Judging by friendly acknowledgements from strangers coming out of the shop and our neighbours at the table next to us, most people are supportive. But you are conscious of their noticing your daughter and your behaviour with her. I am so grateful and proud of my children and their partners. To them she is their sister and treated well. When my grandson was heading off to bed and running around saying "Night night." to all of us, my daughter in law encouraged him to include "Auntie Pania". He came up to her and said, "Nigh-nigh" and threw her a kiss. To our surprise Pania, who often looks like she is "away with the fairies" (We have learned she is not) looked straight at him with her brown eyes and gently touched and patted his shoulder. It was one of those memorable moments. I love my family and wish we were all closer together to spend more time together. But that is life in today's world.