Sunday 13th Feb
Today should have been Ben’s day off physio but as he was going to his friends house for tea tomorrow it had to be done today, he wasn’t best pleased but managed really well. Today was the usual getting ready for school, home work, reading books & uniform to get ready. We had a lovely roast dinner together – life is pretty good.
Monday 14th Feb ~ Valentine’s Day!
It was another struggle to get up this morning the boys had to be dragged out of bed, as I did too. I am getting use to this housewife role!! But there is one problem I HATE CLEANING so I don’t think it will last! The day passes by so quickly & before I know it is time to collect the boys from school, well Jakey anyway. It was lovely to see Ben so excited to be going to his friend’s house.
Tuesday 15th Feb/ Wednesday 16th Feb/Thursday 17th Feb/Friday 18th Feb
To be honest Ben has really struggled this week, but we were expecting this as we had a fantastic homecoming week last week and then the reality of day to day life/school & daily physio was bound to have this effect. He got a little upset during Tuesday’s physio session, which was hard for both of us, he is just so exhausted and it’s all a struggle. He did find it in him to finish physio and he does pick up towards the end of the week. I know he want to do his best but as he has nothing in reserve to give that’s when we get these little events. He has been through so much over the past 6 weeks I cannot even imagine how he is getting by. He never wants to show weakness and always gives his all but when you a have nothing left to give that’s when it all crumbles. We are all so conscious of this and we are trying to encourage & help him as much as possible. The thing he has found the hardest is that he has lost a little of his own independence he had before. We know it will not be long before he is back & even past where he was, but as we are now it seems a long way off. A least we have a week off school next week so he can try to relax and get his breathe back!
Saturday 19th Feb
Another busy day today lots happening and for some reason we have loads of snow, whats that all about!!!
First off is physio with Laura, then a surprise visit to some very special friends! Then we have a children’s music concert that are supporting Ben.
The physio session started a bit bumpy but he soon got into it, and finished of in amazing style managing 12+ steps several time. When I watch him it is just amazing to see him standing tall, knees locked back straight (most of the time) & when he walk it bring tears to my eyes. He wants to able to walk but it is so hard to do all this physio, he only sees little rewards, he doesn’t see what we see. But walking is a huge reward for him.
Sit to stnds without using his hands!!
Next was a surprise visit – the boys were so excited as I had not told them where we were going. As we got closer the boys knew we were going to the Wardleworth’s – they were so giddy. When we arrived all four children were shouting & cheering, it was so lovely to see & for me to see Lou was just what I needed after this week. Ben & Belle showed each other their new tricks then it was splint & shoes off & off to play. I got chance to have a really good chat with Lou, I am so lucky to have her to talk & call on any time. Before long we had another 2 visitors Lou’s parents who had also been in St Louis, it was so lovely to see them as well, the only people missing were the boys!
After a wonderful could of hours it was time to go, none of us wanted to go but we had to go to the Concert. Ben left it till we were just about to leave to walk the length of Lou’s corridor then into her front room, about 20+ steps he just is amazing we were all so proud of him.
The evening was a Gig from the ‘Learn to Rock’ school – the boys loved it, loud music, drums, electric guitars & singers they thought it was wonderful. It was a long night but love to see & hopefully some money towards Ben’s physio was raised.
Who knows what will happen next week, it half term so it should be a quiet one!!
Charlotte xx
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