There is nothing like a special occasion such as Easter to remind you how lonely special needs parenting can be.
Easter this year was no different to other special occasions. My extended family gathered together at one chosen family member’s home, and we spent the day having lunch and enjoying each other’s company. That’s what these occasions are all about, family. What about when you have a special needs child? What about when this child is uncomfortable with crowds and noise and retreats to a room or wants to go home to get back to the safe zone?
This is how I spend these occasions. Every single one of them. I’m not mad, I don’t feel sorry for myself and I am not concerned with what I am missing out on. However, I didn’t always feel that way and I still don’t always feel that way.
Once upon a time, I did feel sorry for me. I felt angry because I was the one that always had to miss out. I felt lonely because I knew it was impossible for my family to understand how I felt in that room. I wondered why I was there. I wondered if anyone was asking about me. I wondered if anyone felt interested in talking to me. I felt totally ripped off and totally alone.
Then as Billy started to get older, I realised that I hadn’t been ripped off at all. I had experienced all those things and still do. Mostly I realised it was Billy who should have the self-pity. It was Billy that should have held the anger. Billy has never had a conversation with another child. He has never played a ball game with another child. He has never had another child as a friend that looks for him to come and play. Yet Billy was happy to just be there with me.
Billy and I sat in a room together over Easter, and his constant smile and laughter reminded me that I am not alone on these days. I have my Billyboy. He makes me smile, laugh, and mostly he shows me I am loved and completely needed. He also helps me to see the beauty in the small things and how at the end of your life, these are the times that will be cherished. If I am included in these moments with Billy, what more could I ask for?
How do you cope with these occasions? Let me know by leaving a comment.