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Old 16-04-2012, 08:30 PM
Dom's mum Dom's mum is offline
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Join Date: Mar 2010
Posts: 122
Default Re: Countdown to surgery

On that note though, we have had a few down days. He has always been so positive and has had an attitude that there are so many people so worse off but he has found it a little harder to see all the good. It is pretty tough when your 16 year old son says "I know it is a long way away but I am really going to have to think about whether I have kids or not aren't I?" Whew that is a hard one to answer! I do as I have always done and give him honesty like "Yes, you will and that is why we will follow up with testing so you know where you stand and what options there are". The spectre of Marfans or an "unnamed connective tissue disorder" still hangs over us with his brother being diagnosed with a slight rounding in his aorta and fluid at the base of his spine. When Dom has his next spinal checkup in July his older brother will also have his first scoliosis appointment....that is a whole other issue "they are not putting rods in my spine!!!" Let's just hope it doesn't come to that, his is nowhere as bad as Dom's at this stage.
Dom is so caring and worries about his brother, they both need to be aware but we don't let it be the focus. Luckily Dom will talk, he is not desperately sad but I am aware and have offered to organize him some counselling but he doesn't feel the need at this stage. I am working hard at building him up as two major surgeries one year apart have taken their toll physically and I don't think this helps mentally.
I sound so gloomy, it isn't all that way. Dom knows his surgeries were necessary and likes the way his body and his health is now. He still has his wonderful sense of humour and is making the most of every day and enjoying life.
Take care
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