I have never had a blog before, so please forgive me and have a good laugh over my spelling mistakes.
I am Stephens mother. He is a 41 year old (going on 4) downs syndrome. He dosn't talk very well, so he use sign language. I wish I was as good as him, but he seems to understand me.
I had been saying for over a year that things were not right. I could never quite say what was wrong, nor could he. His G.P. got him test and it was decided he had a thing called Sarcoidoses. This was because he had problems walking, pain in joints, pains in chest, red eyes and red marks on his face. This led to him haveing x-rays and many visits to local hospital. As it was the start of summer Stephen said he wanted to go on holiday to Greece, so we sorted out the money and off we went. That was in June this year. My husband, Stephen and I had a great time. But Stephen wanted to go to bed eary every night, well it was his holiday, and we still had fun.
When we came home we had the hospital again. This time in July. It might seem strange, but I were given good news, but I wasn't happy. What do I say to the doctor. It was good, but I still thought he was ill. I felt I was being a hypochondriac on his behalf.
Well I left it and went home and told everyone the good news. In September my husband and I went away on our own. We had Stephen home the first weekend that we were home. I still have to bath Stephen, as his idea of a wash is 35 sec.from turning on the tap to pulling out the plug. As I was washing him I thought his testecals looked rather large, but he has always been a "big boy". When I took him back to the house where he lives, I asked them to take him to the G.P. I thought every thing must be ok as they hadn't phoned me. He came home for his fortnighty visit and again a bath. This time his testicals looked bigger and and plum coloured. When I took him back I asked what had the Dr. said. There had been a mix up due to holidays, and he hadn't beem taken. I told them to get an oppoiment there and then. It was, for the next morning. She took one look at him asked a few qustions and phoned the Hosptial for a scan. We got it a week later, on Monday. More scans talking to Dr. And we were told he had cancer, and he was booked in for the opp. that Friday.
He had the chop Friday pm. I spent the night in hosptial with him and sent home Saturday.
I will add some more anouther day, as I am out to a Christmas dinner tonight and I have to get ready. It takes a long time at my age.
FormerMember
Just because he's Downs, it doesn't mean he isn't entitled to proper treatment. Nowadays, they have a much better chance at an education, but as you say he's better at signing than you.
I'm glad he has had the op, but it is early days so far. Make sure that you hear the results from the lab within 2 weeks. It wouldn't hurt to ask when they can be expected. Otherwise there might be an 'oversight' and the material might not have gone down. It is very horrid and cynical of me to say this, but I used to work for Sense, and people can be very insensitive to disabled people.
I hope he has a scan soon and then you can find out how successful the op has really been.
A mother's love instinctivley 'knows' when things are not right so thank goodness you persevered on Stephen's behalf. Hopefully he is now in the 'system' and his treatment can begin. Hoping his results come back with good news.
