Reality

It's me again.... this feels strange, almost like talking on an answerphone, nobody likes talking on an answerphone, right? It's difficult talking with no feedback yet I'm finding this strangely therapeutic. The whole go fund me campaign has been therapeutic for Natalie and I. Excitedly checking our phones to see if we have had any donations, expecting just a handful. Our phone batteries barely lasted half a day each. We have loved seeing the names of the donors popping up. It has evoked fond memories of those of you that we haven't seen in a while or have no contact with. It has also filled us with intrigue. Do you recognise that name we would ask each other. That is a special feeling when we both said no. People we don't know are donating to George's cause. Wow! Its just sad we feel we cant thank peope personally. How have we surpassed £8000? I can't remember the last time I'd posted on Facebook and I had no idea how to create a story, I'm not sure I've got much of a clue now. My brother would message me telling me the link on the story doesn't work. Damn! I'm thinking, how do I edit it? My heads saying what a wasted opportunity but I need to devote time to the all important thank you's and hope that the shares are working. Ive loved muddling through and backing some of George's pictures with his favourite songs. George is a special little boy and we are so proud of him and feel privileged to be his parents. We are obviously upset and angry with the world and circumstances but we are determined to ensure we make George the best version of himself and we will stop at nothing to ensure his every need is met throughout his life. We do struggle and think why us, why George. We did everything right. Times have been hard but we have been strong as a couple and as a family. We have grown stronger through this adversity and although difficult we have even more difficult times to come which became even more apparent in my counselling session today. We talked about support available to us. A charity called peeps left a welcome pack at the neonatal unit, we agreed it would be good to reach out. There will no doubt be more on them as our journey progresses. We are trying our hardest to focus and George and often find ourselves so embroiled in him that we forget about ourselves. Emotions are so up and down it's untrue and the rate at which they change is like light speed. Everything seems to change in an instant at the moment which is difficult for us as we like to be organised. We will adjust though. As I sit on the sofa writing this, the cries of pain and discomfort are yet again ringing in my ears. NBA basketball is on the TV. I hate basketball!! but as the volume isnt required it will stay on. Our poor son is cramping up in pain. Legs and arms flailing about and back arching. I'm fighting to keep him tucked up safe and secure on my lap and in the crook of my arm but the irritations cause him to slip and slide. As his stress levels rise so does the volume of his cry, I'm anxiously hoping that mummy is sleeping in bed as she has a long day of work in the morning. His head starts to sweat and his baby grow is becoming damp with his perspiration. When will this all end. When will George finally get a settled and relaxed night that we are all craving for him. It's so unfair on the little guy. His grow becomes so wet that I need to change him. Upto the nursery I go. Silently sneaking up the stairs so not to disturb mummy. George in one arm his feeding pump in the other hand and his feeding tube looped somewhere in between. Who am I kidding. I'm probably louder than a drunken sneaking around the house, George crying louder than the jet exhaust of a tornado and me clumsily opening doors with my elbow. Sorry mummy but please try to sleep, you've got work. Im thinking. I will doss in the morning. We are like passing ships in the night at the moment. When I return downstairs, I egarly check the NBA score. DAL 11 GSW 5. How exciting. I begin to rock George gently and tap his bum, all the classic parenting skills I'm told should sooth him. As he yawns I hope he will nod of peacefully but he just can't, the discomfort is to overwhelming for him. His eyes are heavy and the need to sleep is apparent but it just won't happen. In a bid to calm him I sit him infront of his favourite govee floor lamp. Well maybe second favourite to his curtain lights that hang on his wardrobe in his nursery. I go through the modes 1 by 1 to see if a different setting will hold his attention. He loves the changing colours and the motion of the light show settings but they only hold his attention for a short time. We have respite coming in for a few hours tomorrow, a welcome opportunity for some rest, but the reality is that it provides time to get done the jobs that are on hold whilst attending to George's needs. Similar to most parents experiences I'd imagine, only George refuses to be put down. He slept for a few hours yesterday morning due to pure exhaustion. Tonight is following the same pattern as the last, if the day follows the same today he will likely sleep through his respite. Typical! Thursday brings our weekly meeting with the hospice. Mummy and I have been discussing medication to help George sleep. This will be high on the agenda. As I sit looking at him my mind drifts to the plans for next week.... mummy's birthday. We are going to the royal shrewsbury hospital and as if that wasn't good enough we go to Birmingham childrens hospital the following morning. Hopefully after having some sleep as it's an early start. (George has just drifted off to sleep sat on my lap.... I might get some sleep, mummy will nodoubt be struggling to sleep as its quiet and she will wonder if things are ok) The Birmingham appointment will hopefully go a long way to help getting George comfortable. Watch this space. I'm finding the blogs quite therapeutic but feel this platform is wrong? If people are reading them and enjoying I will look for a more suitable platform when I get a chance. Hopefully I will get some sleep now, I'm sure the parents reading became ninjas at moving their sleeping children without waking them. I praying he doesn't wake and sleeps though until morning. His alarm will be set though. He's got work with danny in the morning. The digger wont drive itself. George has also made an electrician friend today courtesy of a wake up call from Danny. Within the hour Mikey Jones was on our doorstep and is kindly doing the electrical work free of charge and the suppliers are donating the materials which is amazing. Who knows George may try his hands as a sparky, just incase ground working with Danny doesn't quite work out. All in all we are excited to be progressing with it all so quickly and you will be updated like it or not. Thank you for today's donations. Cant believe they are still coming in! It's amazing.