It is hard to describe how I feel on each of Noah's birthdays. When he was diagnosed with hydranencephaly at 9 weeks old we were told that he would possibly live for 2-4 years. I always had that in the back of my mind and never imagined that he would be going to school full time and turning 6! I am always really happy that he has reached another year, but also feel emotional on his birthday because I know that is one less that we will celebrate with him.
Silly I know - we should just be happy. Of course we are happy - I think that in the back of your mind you are just wondering how many more we will get to celebrate together.
Noah is actually healthier now than he has ever been in his whole life. The first two years were very hard on him but he has now not been in hospital for over two years - except for when he was doing the ketogenic diet and had his tonsils and adenoids removed last year, but we don't count those as a hospital trips - he wasn't really sick then.
I just got off the phone after talking to Kleif from Germany. At first I thought it was one of those painful telemarketers and was ready to say 'no thanks' and to hang up, but then realised who it was! Kleif has a daughter Johanna who also had hydranencephaly and who turned 6 today. We weren't sure last year whether Johanna would be around to celebrate this birthday, so I know that he knows exactly how I feel. It is so nice to 'know' so many people from all around the world who have children just like Noah. They they don't feel sorry for us but know that how lucky we are to be blessed with a child like Noah.
Happy birthday little dude. The photo is just gorgeous! He is so beautiful. I spent a few hours reading up all the info on hydranencephaly yesterday and the stories of lots of people on the web site. I was so touched and felt from your story what a blessing Noah is to your lives.
ReplyDelete