Wednesday 8th August

It's now been nearly two and a half months since William's surgery and still no sick! It really has made life a lot easier, a lot more flexible, a lot less washing and a lot less sick smelling.
We've recently started William on a new medicine to help dry up his secretions which has helped a little, he is dribbling less but still choking now and then on secretions, but he manages to clear it so it's no big problem. I mentioned last time that William had been sent home with a Farell Valve, well I got fed up of it and didnt think it was doing anything so agreed with some of our team to try William without it and he's been fine which is good and saves a lot of fuss.

A couple of weeks ago we went to Activ8 with William again. We had a great week and William was really good, especially as he can't be sick now! He went swimming twice and even managed to fall asleep in the pool. Here's a link to some of my photos from the week:

https://www.facebook.com/media/set/?set=a.10100483579147308.2655508.199702150&type=3&l=8dc32d171a. The children who come on the holiday really love to hang out with William. They ask lots of questions about him but aren't phased by anything, they just accept him as he is. The childen loved singing and playing with him and it was really lovely to see. Some of our friends joined the team this year and bought their two lovely girls. Their youngest, Charlotte, is just six weeks older than William and has always seemed to have a soft spot for him. While we were away she would often go over to him and stroke him or do 'round and round the garden' on his hand. One time she was pushing him in his buggy and William started whinging so she just stopped, walked round to him and started stroking his cheek, it was so lovely. Another time we were singing with the children and doing actions so I had William laid on the floor and was moving his arms to do the actions. Charlotte came over and just took over from me, moving Williams hands around and clapping them together. It was such a lovely moment and I absolutely love seeing other children engage with him. Often I find the yougest children are the most natural at interacting with him, it's a shame we lose some of that as we get older.

Chilling with Pheno

William also attended the dentist for the first time the other week. He has to attend the dentist at the hospital as they are used to dealing with similar children. It was just a check up but William managed to sleep through the whole appointment, despite the dentist having a look at all his teeth!

I find these days it's much harder to know what to write on the blog, hence posts being less frequent. When William was younger things changed quickly, we had a lot to get our heads round very quickly and it was pretty overwhelming but now things are much calmer. However I wanted to write about a book I just read. It was lent to me by Steve's mum and is the story of a family who had three children. The first was diagnosed with a brain tumour at only a few months old and given 2-6 months to live. She lived to be 12. Their second child had severe development delay and had the mental age of a 9 month old. Their third daughter was born 2 and a half months early but went on to be ok despite initial fears she might also be disabled in some way.

The book has a short chapter written by the dad at the beginning that I really related to so I've tweaked it a bit to be true for me. The book is called Hurting Hope, by Charles and Joanne Hewlett.

Sometimes being a mother isnt what it was meant to be.

I thought motherhood would mean helping my son take his first precious steps. Instead, it's taking him to clinic to be assessed for a specialist pushchair.

I thought it was mum's job to take those adorable, if embarassing, photos to show at his 21st birthday. Instead it's taking photos so that after he dies I won't forget what he looked like.

I pictured myself standing over my child's bed as he slept, thanking God for his precious life. Instead, I look out at him from a mind that is numb from questioning God: 'Why?'

I imagined going to school interviews to hear from the teacher how my child was progressing. Instead, I am discussing EEG results with the neurologist to see if there was any change in his fits.

I dreamt of the joy of watching my children grow into healthy adults. Instead, I worry about him getting bigger and how we'll manage to move him around.

I thought I would be arranging family holidays in the sun. Instead, I'm worried about travelling out of the county in case he suddenly falls ill.

I imagined being the coolest mum in the world when my children's friends came over to play. Insetad, I am explaining to other children why William doesn't play with them.

I thought motherhood meant being there for my son when he got older, helping him to make wise decisions in life. Instead, it's wondering where I'll find a private place to change his nappy when he's 10.

I thought motherhood was being at my son's wedding seeing him marry the woman of his dreams. Instead, it's beginning to put together in my mind an order of service for his funeral.

Sometimes, being a mother isn't what it was meant to be.

While this is so true, as I typed it out I realised how depressing it sounded. It made me realise how far I've come with my attitude towards William. When we first had him everything seemed hard and scary and life seemed to have much less to look forward to. I think over time two big things have changed. Firstly we've got to know William. We've got to know more of his personality, seen him develop in teeny tiny ways and fallen in love with his smile. Our love for him has grown so much that he feels every bit worth all the difficultness. Secondly, we've just got used to it. There are many many things we can't do that we wished we could but we just look for the things we can do. William will never learn to ride a bike but we're looking at ordering a special frame for his buggy so we can tow that behind a bike. We'll probably never be brave/stupid enough to take him on an airplane but we can holiday at Centre Parcs and still have fun. We might find it difficult to get out the house at times but it's those days where it's just me and him where he seems more comfortable and gives me the most smiles.

Of course there will always be sadnesses when we think of all the things he won't do and we wonder what he'd be like but William is William, he is who he is and he's so amazing. He has taught us so much and introduced us to so many wonderful people so what's the point in dwelling on what will never be. Take joy in the things you do have, don't miss out on them by dwelling on what you don't.