Thursday, 5 April 2012

Don't be Sorry!

Not Listening!

Ever have a conversation with someone, and no matter how hard you try to explain yourself the other person just doesn't seem to hear what you're saying?

I was talking to someone the other day and she asked me about Felix. Of course, being the proud Mum I am, I told her all about the things he's learning to do and how well he is progressing.

The conversation went downhill from there. She then referred to Felix as a 'Poor little mite' and went on to tell me that she hopes they'll find something to 'fix it' one day so he doesn't have Down Syndrome any more. I tried to explain that he wouldn't be Felix if he didn't have Down Syndrome, and we were happy with him the way he is. Again it seemed to fall on deaf ears!

She went even further to say how hard our lives must be and how she hopes people understand how tough it is for us. I felt a little bit like screaming out at that point, "Our life is not difficult. We love our life. We wouldn't have it any other way", but unfortunately I have had to learn that sometimes it's better just to let things go if it seems the person I'm talking to doesn't want to listen.

Hanging out with his brothers
Who knows what the future holds for any children?

Raising children is hard work. Raising 'regular' children with no disabilities is hard work!  Three of our children are already adults and we are very proud of them, but that's not to say they haven't been hard work at times. When we make the choice to have children, we are beginning a journey with more twists and turns than we could ever imagine. We never really know what is going to be around the next bend. There are going to be challenges, I can guarantee that!

I have watched as people I know have had to witness their children deal with depression, drug/alcohol addiction, cancer and other serious health issues, disability as a result of an accident, criminal activity and some have even had to suffer the loss of a child. Life is unpredictable!

When Felix came into our life, we knew immediately some of the challenges we would face. He would have learning delays. He would walk and talk later than other children. We knew some of the health issues he might face. We know that, unless there is a medical breakthrough, he will develop Alzheimers disease at some point in his life (possibly as early as 30 years old). (See Amendment below) BUT, the difference is, that in Felix's case, we have been able to do some research and we will be vigilant in preparing for the future and make allowances for all the possibilities. His future is secure.

Hello Felix !
Yes, there will still be surprises along the way, but to be honest, I feel better prepared to raise Felix than I did with our 7 other children!

Don't be sorry

When we received Felix's diagnosis when I was 19 weeks pregnant, we decided to tell everyone we knew straight away. We were OK with his diagnosis, but we wanted to give other people the opportunity to deal with how they felt about it before he was born. We didn't want people to feel sorry for us or sad for us. We wanted people to look at him the first time they saw him after he was born and be able to say 'Congratulations!'

On a lighter note...

Leaning in to see the dolphin
This morning after painting some Easter Eggs with our 12 year old son (I still have food colouring under my finger nails), I took the four youngest boys down to the beach to see the dolphins.

Felix has seen them before, but was too young to really pay attention to them. This morning was different. He loved it!! The look on his face was priceless as he watched them dive in and out of the water. One of them kept coming up close to him so he leaned as far as he could out over the water (with Isaiah's careful supervision) and tried to touch them. He would make grunting noises if he couldn't see them any more, then get really excited when they bobbed back up again. I love it when he discovers something for the first time. It still makes me all emotional inside!

After a busy morning in the sunshine and eating lots of hot cinnamon donuts, Felix was well and truly ready for a sleep. It's been 2 hours and he's still out like a light. Might have to go and visit the dolphins a bit more often!

Amendment: Since writing this blog today a friend of mine, who happens to be a Doctor and is also blessed with a precious little one with Down Syndrome, has let me know that some of my information regarding Alzheimers was incorrect. The correct information is as follows:

 Current evidence shows that only about 50% of people with DS will have clinical evidence of Dementia by age 60 years. Although when dementia does occur in people with DS it can start very early the average age of diagnosis is 55 years old.The relationship bw DS and Alzheimers is complex as the amyloid protein which is deposited in abnormal amounts in the brain with Alzheimers Dementia is coded for on chromosome 21.

Thanks for the information K x x x 

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