It’s hard work being ‘positive’ when you are the parent of a child with a terminal condition with no cure. It really is a draining task. The last few days, I’ve hit a slippery slope again and no matter how hard I try to be positive, I’m finding myself slipping downwards. Maybe it’s just the holiday blues, or the daunting thought of all the appointments coming up. Perhaps it’s the reminder of diagnosis day at Wednesday’s appointment, or the constant stress of appealing the DLA decision. Or it could even be trying to keep Hugo calm while he has yet another test, and worrying about simple things like ‘how is Hugo going to manage to carry his lunch tray in reception’. You see, all these things separately are relatively easy to deal with, but put them all together and it’s one massive weight on my shoulders, combined with juggling day-to-day life and keeping 3 children entertained.
There comes a point where, every now and then, you just have to admit defeat and let the tears roll. I’ve seen a lot of posts on social media of older Duchenne boys, in wheelchairs using ventilators. I’ve heard a few stories of Duchenne boys dying, some as young as 10, others as old as 40. It’s proving to be too much for me. I’ve taken myself off a couple of the Duchenne Facebook groups, because it’s making me look too deep into the future. One particular thought I had was Riley and Jasper will be in their late teens and early twenties when they could lose their brother. Potentially starting college or university. The thought of that happening was completely overwhelming. How on earth will they deal with that? How would I have felt at 18 or 21 if one of my sisters had died? I know I shouldn’t think that way, but when you are forcing yourself to be positive ALL the time, it does eventually catch up with you, and it comes with an overwhelming feeling of panic. Everything suddenly crumbles at the same time.
I think I need the occasional weakness to make me stronger though. I need that release every now and then. I had a good cry on Wednesday night with my closest friend (the strawberry daiquiris didn’t help!) and I did feel better for it, but I don’t think this bad spell is over just yet. Of course, I don’t feel as overwhelmed as I did for those first few weeks, and I’d like to think I can control it better now, but it’s still extremely hard, everyday. It’s not getting any easier to deal with at all, it’s just getting easier to put on the brave face.
I’m sure my positivity will return over the next few days, but for now, I’m just going to go with my emotions and let them out. I’ve tried bottling them up before and it didn’t get me very far! I keep reminding myself that it’s not even been 3 months since we found out, so these ups and downs I am experiencing are perfectly normal.
Today we have a visit to the fire station planned which sounds like heaps of fun and the boys are super excited! Here’s to a good weekend!