Last night after finally finishing my sons physio, standing, stretches, chest physio, toileting putting his orthoctics on, a routine that can take up to two hours before bed I finally got to sit down. I than put the washing on, hung aload out, tided up from dinner, paid a bill online, opened up the mail and put two new hospital appointments in the diary and sent of letters asking for help with equipment and housing.
My daughter than came into see me saying she could not sleep, a pang of guilt hit me that I had not really spent any time with her that evening so i put my phone down and we watched a Disney film with us both falling asleep.
By midnight I was woken up by my son wanting to have a drink. I sat him up and supported him and held his bottle so he could take a drink, I gently lay him back down and tip toe out the room for him to call me just as my head hit the pillow saying he needed the toilet. I gently undressed his bottom half and lifted him on to the toilet, supporting his floppy body whilst he goes and got him dressed and back into bed as quickly as I can.
During the night I get up a further 7 times to either reposition my son, give him a sip of water, take the covers of him or put them back on or place his head back on the pillow all due to the lack of muscle strength that has gradually got weaker as his body has grown.
Morning comes and I just laid there looking up at the ceiling with a lump in my throat and tears welling up wondering how I am going to get up and find the strength to get him dressed and lift him. I am so tired.
Eventually both kids wake up, my little girl gets herself dressed and gets her breakfast out which to be honest she is far to young to be doing and I toilet, stretch, do chest physio, brush my sons teeth because he does not have the strength to squeze the tooth paste out or to keep his tooth brush held up to his mouth. I get him dressed and carry him into the kitchen for breakfast. I put the kettle on and get everything else ready for their day at school and just as I am about to pour boiling hot water onto my teabag my son needs the toilet again. I undressed his bottom half and toilet him; wipe the poo of his bottom and redress him, doing all the buttons and the zip up for him due to lack of strength and put him in his wheelchair that I have just realised i forgot to put on charge. So I lift him into his manual chair and feel like the worst mum ever as he hates going in his manual as he bately has the strength left to self propel.
His breakfast goes uneaten as his head is too heavy to keep up, he uses his arm to prop it but he is frustated and gives up not wanting me to help him and to be honest with his swallow getting weaker I wonder if he should really be eating at all but with no weight gain in six months due to constant chest infections it is yet another double edge sword.
My daughter who is only 6 has now got ready all by herself and is waiting with coat and shoes on by the door. I brush and plait her hair and I hug her with every bit of love I could possibly have coming out of my arms and tell them both how much I love them.
The cab driver comes to collect us. I lift George into his car seat and load the chair up make it in to the school reception just short of ten minutes late but with less than 35% attendance I am just relieved we are here at all.
George wants to push the buzzer to get in but cannot. His finger does not have the strength and he breaks down and cries.
The teacher opens the door and I now have to leave a frustrated, upset little boy alone for the day.
My heart is breaking, my soul is empty. I feel numb with grief as I watch my son waste away infront of me and I am powerless……..
But you are not. None of you are. My son has the RIGHT to enter or exit a building. He has the RIGHT to do his buttons up, he has the RIGHT to brush his own teeth and he has the RIGHT to a life that is one of quality and NO ONE, no one has the right to say no to that.