I'm using this as a place to vent to get out the mess in my head. I know most of my blogs are usually this but this afternoon I just need to untangle this mess so I can move on.
As we drive home from dropping off your sister to her dance class I glance back to see your eyes close. It's been a long day back at Kindy, you've had two weeks off. I think, that's ok I'm let him catch a few z's while we do the 15 minute drive back home. As we pull into the garage I prepare myself to wake you. I don't want to be the bad guy but I have to.
I have to wake you my sleepy child, I lift you out of the car and your eyes open briefly. I explain that you need to have a shower and then do your Physio. You just close your eyes again. I try to stand you up but your knees buckle. I want to let you sleep my munchkin. I don't want to be the bad guy. I carry you to the bathroom and start to strip you off. This is when you really get upset and start fighting it. Screaming and crying I notice that you still have a bandaid on you from when your port was accessed last week. You have a big dislike about removing the bandaids and I take this opportunity while you are angry at me anyway to take it off. It comes off with ease as it was well and truly ready but it angers you even more. You become louder and fight stronger against having a shower. I end up winning and get you in and washed and leave you to wash the suds off as I grab your pyjamas and prepare the nebuliser for your Physio. I return to you still standing, still sobbing and covered in suds. I don't want to be the bad guy but I put you under the water to wash you off. We wrestle as I dry you off and get you dressed. Not an easy task when you are kicking, screaming and trying to take off the clothing I have put on. I don't want to be the bad guy. I take you over to do the Physio session and your fight has grown even stronger. You push off the nebuliser and close your mouth tight not letting me get the mouthpiece in. I plead with you to open your mouth, that it will easier on both of us. I don't want to be the bad guy but I grab the mask and attach it and I force the machine onto your face. I hate this just as much as you. I don't want to do it but it needs to be done. Eventually you surrender and stop fighting so hard. The nebuliser beeps. It's finished and we just hug in silence. We both just hold each other silently apologising for what just happened. I don't want to be the bad guy! We finish the session and you are happy and smiling again but it has left its mark on me.
CF and its crappy shitty ways have left its scars on me once again emotionally. I don't want to be the bad guy when CF is. The invisibility of this body and soul destroying disease affects us all. Not only does it scar my precious boy and his lungs but it destroys me mentally. You may not see it but it takes a little piece everytime if I let it. I hide it well too! I hide it behind my smile as I face the day and try not to show my scars. I hide it as I don't want to bother you with my daily troubles. I hide it from my little boy as he needs to see the smile not the scars it leaves on me. I hide it from myself too keep the demons at bay. I am and I will take those pieces back from you CF. I will fight you too! Screw you CF you've taken enough!
Thanks for reading and letting me vent.
K
