September

So Thursday was the first of September, a brand new month. Although surgery at our local hospital was only a week ago and it hasn’t even been a full week yet since we returned from London after a visit to St Thomas’s hospital it feels so long ago, last month in fact! I’m glad it’s all behind us as surgery wasn’t a nice experience this time, it never is, but this time Livvy refused everything including calpol to ease her pain and woke up the same as she went to sleep, screaming, crying and fighting everyone around her.

I know that Livvy needs more surgery, it’s so hard watching her struggle with them. Sometimes she does so well and others not so, like last week. There’s no way of telling which way it’s going to go until it all starts falling apart around me. Nothing I say calms her, it’s a horrid feeling as a mother to feel so helpless when your child needs you so much. The medical team around us are excellent but that feeling of helplessness can be all consuming and hard to overcome when watching your daughter cry out in a confused state of pain.

After talking things over with the XP team in London it is certain that Livvy does need more surgery but we are going to try and wait a while before going ahead, she needs a rest from the cycle of surgery. We looked back at how regular her surgery dates have become with only eight weeks between her last two. She is definitely ready for a rest from them. The plan is to wait and remove her current BCCs in the future and fingers crossed nothing fast growing appears whilst on this break.

School starts up next week, I think both Livvy and Eddie and excited to get back, we’ve had the normal apprehension, more so from Eddie but I’m sure they will both settle back into the routine of school with ease and we can start to put this summer behind us. It’s been a long hot month with too many hospital visits for any summer holidays.

The positive feeling I got from achieving the 10k last month was somewhat short lived as we were faced with the hard reality of living xeroderma pigmentosum whilst waiting for Livvy to wake from surgery, returning home with the hot summer sun shining down on our tired girl. If anything it made me realise how much I need running to help me get through the hard days, so you will be pleased to know I’ve booked another 10k for early December! My plan is to do some actual training for this one, and now I’ve told you dear reader of my plan there’s no getting away from it.

The leaves are starting to fall from the trees as we take Jack, our dog, on his evening walk, September is a great month, the start of many months of freedom for Livvy as the nights get longer. It feels like we have forever ahead of us to enjoy the darker nights although I know it’s only a matter of time before spring will be knocking on our door which is why we have to make the most of these months and enjoy every second. I’m sure you are getting tired of hearing about my love for Autumn but it’s the true reality of living with XP, the summer months can be so restrictive, a prisoner of the sun, hiding away waiting for a cooler day before leaving the house.

We went out last week to a local National Trust property, the day started really cool but by mid day the sun was so hot and the skies were so blue. Livvy and Eddie were getting ready for a cool down so we went into the cafe for an ice cream, unfortunately Livvy had to keep her protective mask on as the cafe area wasn’t safe, big windows all around letting in the harmful UV rays. As we paid for our ice creams a lady said to Livvy ‘that’s an interesting hat you have on’, before Phil or I could step in and say anything in defence for Livvy, Eddie came forward and said ‘she’s actually allergic to the sun! That’s why she’s wearing it!’

I was so proud of him, for speaking out for Livvy. I know she will be ok when she’s older as she will have her brother to look out for her when she doesn’t want me or her daddy doing it. I just hope Eddie doesn’t make it his one job at school during play times, to protect her, now that they are on the same side of the playground, as Livvy enters Key Stage two next week for the first time. He still needs to be himself as well as his sisters protector.

With September comes a brand new month and a brand new chapter as both Eddie and Livvy go back to school and start this school year with big smiles on their faces. Let’s hope we get to enjoy the Autumn with as few hospital visits as possible and are able to get out doors more as Autumn really takes a hold of September.

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