There's a few things I've been musing over lately that I wanted to blog about, but firstly a quick update...
Since I last wrote William has started being sick again. It started with a cold a few weeks ago. The specialist nurse at Addenbrookes has advised this is not unusual with a bug to be sick but if it doesn't die down we can have an x-ray to see whether his nissens has failed or not. The sickness has died down and is no where near pre-op levels but there is still some sick so we'll have to watch this space. Initially we were really upset that the nissens might have failed but now we're just really hoping that the sickness dies off again.
We had a lovely holiday at the start of Sept at Center Parcs. We were really pleased to see other families with disabled children there and in general the place was really well set up for William. We'll be definitely going back and we were very excited to find somewhere close by where we can easily go for a good holiday. For those not on facebook here's our holiday photos: https://www.facebook.com/media/set/?set=a.10100515670026928.2667190.199702150&type=1&l=ca6ea05465. We also had fun making our own music video while we were there! http://www.youtube.com/watch?v=g_deTKZZWhw&feature=g-upl.
In general William has stayed well apart from one cold which is brilliant. It'll be interesting to see how he gets on over the winter months but he's started off well. In the last 6 months he spent one week and then one night in hospital. If he makes it through the winter with that few stays I'll be mighty impressed!
Things are slowly moving along with the house adaptations and the first set of plans have come back and been reviewed and sent back. I'm really hoping the work will begin within the next 6 months. We're still waiting to hear back from the geneticist on the latest gene test carried out. At the moment we're not feeling hopeful that they'll ever identify the faulty gene, which basically means if we go on to have more children we'll have no idea whether they're at higher risk of having the same condition and we wont be able to find out if they do until around our 20 week scan, in the same way as we did with William.
Here's a link to some of my other recent photos for those not on facebook: https://www.facebook.com/media/set/?set=a.10100174233932598.2595430.199702150&type=1&l=8249cc6671 and https://www.facebook.com/media/set/?set=a.10100538570638918.2673349.199702150&type=1&l=7d31a6f682
I've been thinking a lot recently about taking things for granted in life. Ever since having William, one of my biggest bug bears is people thinking they are entitled to things in life, to good health, to healthy children, to material stuff. Having William and meeting many of the other families we meet in similar situations has made us realise how insanely wonderful it is that most babies are born relatively totally healthy. It seems a miracle that most babies are fine while only small numbers have complex problems considering all the hundreds of things that can go wrong. I adore William with all my heart but there's still a big part of me that would love to have the experience of having a healthy child, one that will hopefully learn to walk and talk and call me mum and say funny things, and play with his/her big brother. At the moment we have several things in the way of this happening, we aren't in a position at the moment to choose to have another baby. I have friends and friends of friends who have faced multiple miscarriages, read of families having multiple profoundly disabled children and having more than one of their children die. If you're one of those people who has never had to face any of that or who has a healthy child, don't ever take it for granted, consider it a miracle every day that you have them. William is a wonderful gift to us who I will always be thankful for...which sort of leads me on to my next two points.
This evening we visited the fair with William in town. We had a nice time walking around and even took William on a ride. What made the evening enjoyable was as we walked around William had a slight smile on his face the whole time. We're so used to walking round with mr grumpy face/mr nobody's home that it was lovely to take him out when he actually looked like he was enjoying himself. It made the whole experience much more enjoyable. And then I thought if it's so nice taking a vaguely happy William to the fair what must it be like to take an excited, able to go on the rides, regular child to the fair?!
Secondly, earlier today I was looking at William as he lay on our bed, again in a vaguely happy mood, and I thought isnt it amazing how much I love him despite the fact that he rarely does anything to make me love him. He sometimes offers us brilliant smiles and quirky laughs but a lot of the time he doesn't really do a lot, and in fact some days he does absolutely nothing. And yet I love him with all my heart. And then it made me think of God and how He loves us unconditionally, not because of anything we've done to earn that love, but because we are His children who He made. And for the first time today I saw that link and understood a bit how God's love for us works.
Generally other children dont play too much with William, hes pretty boring to be honest to them. A couple of weeks ago, however at play group, a little girl who has a bit of a soft spot for William spent a good half hour sitting with him showering him with kisses. She was so excited to be giving William kisses and it was really lovely to watch because it was a rare occasion where another child played with him. Such a small thing but I love it when it happens.
I think my ramblings seems a bit disjointed but I think I just wanted to get across that the things we take joy in over William are the things other people probably don't think about. The things that other families do all the time are rare special moments for us. Never take any good thing in your life for granted, never think you're entitled to it. If I can sit holding my fitting son who is crying at the intense spasms pulling his limbs in every which way and still feel thankful for him and his beautiful smile then I'm sure there's a lot most of us have to be very thankful for.
