My life as I know it

Let me give you an insight into my life. I know there are some out there that have a good idea of what my day to day involves, whereas others haven’t got an inkling.  I won’t bore you with the whole day, I’m just going to give you a little snapshot, a moment in time as it were. Come back with me to this morning, a morning that started off well enough due to a sleep in we all had.

“BuddyBoy, you’ve done a poo, come change your nappy. Come on, up on the change mat, let’s change your nappy, and then you can play. Come on, let’s go.” He’s not moving, so hubby comes over and picks him up, carrying him to the change mat.  I’m very thankful for a husband who changes nappies, even the disgusting ones, so I leave him to it. I hear BuddyBoy getting louder, his voice rising in pitch and intensity, while I hear hubby’s voice trying to calm him down. I go out to the change mat and see my son thrashing around, his hands reaching down to scratch his Daddy’s hands, while he throws his body up and down on the mat. Daddy is trying to stop the poo from being smeared everywhere while trying to calm BuddyBoy down and also defend himself from the attack. I go over and shush him gently, wiping the hair out of his face. He grabs my hands, digging his nails into my skin, and then smashes my hands repeatedly into his forehead.

I manage to wrench my hands out of his grasp, and try applying pressure to his head to see if that will help. There is a momentary lull, before he starts screeching again and kicks Daddy in the chest. His hands start madly tearing at my hands and arms, and I end up having to hold him by the wrists with his arms above his head, to avoid either of us being hurt. In between kicks and lunges, Daddy manages to finish wiping the poo off him and get a new nappy on, as well as some pants. We both let go and stand aside, like wrestlers in a ring.

BuddyBoy hops down and takes a few steps away from us, before turning around and pulling off his pants and nappy, while staring at us defiantly. I tidy up the change mat while hubby manages to get a cloth nappy on him, and then BuddyBoy runs screaming into his room. We hear the sound of toys being smashed and high pitched screeching, so we go in to remove the heavier items, knowing that they are likely to be smashed against the window. BuddyBoy lunges at me, leaving blood behind on the back of my hand from his fingernails. I step away and he follows me, screeching, hands like claws reaching for me. His eyes are glazed over, he’s no longer aware of what he’s doing. Whenever he manages it, he hits his head with my hands, or headbutts my arm, my stomach, my legs.

After a few minutes of this, I ask hubby to get my phone and record it – the doctors never seem to believe me when I try and explain this to them. 

BuddyBoy continues trying to scratch me, and to throw himself to the floor so he can bang his head into it. I hold onto him to lower him to the floor gently, knowing that once he starts bashing his head, he continues. He starts to calm down, and I let go of him. He picks up more toys and tries to smash them, and when that fails, he starts throwing them at me. This is a new thing – the other day he threw his doorknob at me but luckily I managed to duck in time.

We pack up the toys, remove the TV which he’d previously been watching, and his media player with attached hard drive. We can’t afford to replace them for the third time this year so we have to move them as soon as he loses it. BuddyBoy doesn’t like us packing away his things, so he attacks me again with renewed force. I get more scratches and bruises, and end up having to hold him on top of his bed while hubby and daughter get things out of the room. When I can finally let him go he gives me a parting kick, and we leave him in his room.  Past experience has shown that he calms down quicker when he’s by himself, but this can also be dangerous for him.

We stand outside his door, looking at each other and breathing heavily. The screaming escalates, and we hear hard thuds on the door, which is shaking in the frame. “BuddyBoy, stop hitting your head, no hurting, no hurting.” The thudding continues, and hubby opens the door, and tries unsuccessfully to calm him down. He manages to get out the door again, and the thudding is back. I know BuddyBoy’s head is already covered in bruises and large bumps from the last several sessions of headbanging, and I worry about the windows. I go in and keep him away from anything he can hit his head on, while also trying to keep myself from being hurt further. He finally stops lashing out and drags me out to the kitchen, where he asks for breakfast, still sobbing. Tears are streaming down his face, his head is blue and black with dents on it, but his eyes are no longer glazed over. He’s back.

Welcome to my life. My everyday when a PANS flare strikes. When the son I know and love is no longer the same little boy. When we aim for survival, and don’t dare leave the house with him. When we worry about how we are going to control him not just in 10 years time, but in 2-3 years time.

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4 thoughts on “My life as I know it

  1. Kudos for sharing. I find it difficult to share the really hard times because, while we desperately want people to know our reality, I feel exposed when they get a glimpse of the ‘inside’. It sounds like you and the Mr. are a good team. Cyber hugs all around…

    Liked by 1 person

  2. nawww Martina! ;( this made me cry! my heart goes out to you all and especially your beautiful boy! keeping you all in my prayers and I pray this passes quickly. we’ve had very similar moments and it breaks my heart each time. lots of love matey!

    Liked by 1 person

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