I love my friends with typical children; they support me and provide funny anecdotes about life at times when I’m in desperate need of light relief. They accept my family the way we are along with all the complexities that arise when your child lives with a disability.
There are times, however, when I wish there were a few things that they knew, just so they understood a little better what my life feels like.
1. I worry ALL the time
Yes, ALL the time! Before I even had children I was a ‘people pleaser’; I would say yes to everything, attend every event and not cause a stir. Now I have a child who will need me in more ways than his sisters will as he grows, and that makes me worry. I worry about his future, I worry that if I’m not here for him, who will look after him. I worry that he won’t be able to open the sandwich I made for him today because I accidentally wrapped it in glad-wrap and not the robust foil he is used to. Of course, he’ll never go hungry – but that’s beside the point. So you see, even when I say I’m ok, I’m not really. I am in a permanent state of worry and I am trying to work on that. And for the most part I get on with life, I attend appointments and go to work etc, but I still worry and it’s exhausting!
2. Please keep asking questions
Please keep asking us questions about my son, Mikey’s development since his brain surgery. He is still the same little boy but living with a half-functional brain still brings with it many health and cognitive complications. He works very hard to ‘look good’ but please ask us, just like if you were to ask after any of my other kids. Even better, ask him what he likes to do! Do you still like horse riding Mikey? Just watch and wait for his little face to light up when you ask him a question about something he’s passionate about! As Mikey grows, I hope the world around him still acknowledges that even though he has his challenges, he has his passions just like everyone else.
3.You don’t need to keep saying sorry
You don’t need to apologise when you tell me what’s going on in your life because you know the difficult challenges we are facing each day. It doesn’t mean that your challenges aren’t important or worthy of a whinge! We all need to get things off our chest from time to time. I don’t keep a tally about all the things people tell me and then give them a score out of ten! Of course, if you ring me on the day of my child’s surgery and complain that you got a speeding fine, then yes, that will annoy me and that will receive a 1/10 ;). I feel common sense will prevail, most of the time – for most people! So please, from now on, stop apologising for your life. It is what it is, as is mine!
Follow more of Kelly & Mikey Danger’s journey at thedangerdiaries.