We have been in our journey for more than five years now. In the beginning we were always told that Sunny was just delayed and that he might close the gap to his peers some day. But as the years pass by the gap is widening instead of closing. And nobody talks about closing the gap anymore.
Instead, the term "developmental disorder" is more frequently used now and also the term "disability" is being brought up more and more. It shows me that this thing we are in is something that is going to stay and that it will not eventually and miraculously dissolve like fog in the sun. Although I wish it did.
I used to be offended when somebody asked me about Sunny's "disability". I would always correct the person and say "he does not have a disability, he is just delayed". I really had a hard time hearing the word "disability" in connection with my son (and I still do). But while the gap widened more and more and while reality caught up on us I grew into this special needs world as well. I had time to get accustomed to the facts. To accept things as a given. To let go of my expectations. To see the reality we are in as it is getting clearer day by day. And, therefore, I started to talk about his disability now and then, too. I am still using the term "developmental delay" most of the time, but I also sometimes say that he has a disability. And while I still do not like that term and it is still not easy for me to talk about it, sometimes and in certain situations it feels more appropriate. And sometimes it emphasises our need for a different treatment, one that helps us better.
I try not to close my eyes from the facts and my heart knows that I have to start living with this new word in our life, one that will stick with us in the years to come. This word leads me to another world other than that of developmental delay, one where I felt home in a way because I had time to settle in there. It was a place that still opened up possibilities in any direction. But I feel that I have to leave this safe world as time moves on, and go to a new world of uncharted territory. The world I still have to get used to and where I will have to find a new kind of home in.