When we first received William's diagnosis of Lissencephaly at about 22 weeks into the pregnancy one of the first things we did...google it! One of the first things we read was this little gem from wikipedia...
"Lissencephaly, which literally means smooth brain, is a rare brain formation disorder caused by defective neuronal migration during the 12th to 24th weeks ofgestation resulting in a lack of development of brain folds (gyri) and grooves (sulci).[1] It is a form of cephalic disorder. Terms such as 'agyria' (no gyri) or 'pachygyria' (broad gyri) are used to describe the appearance of the surface of the brain. Children with lissencephaly are severely neurologically impaired[2] and often die within several months of birth."
However, from the moment we read that we had the age of two stuck in our minds. And now here we are! We feel so happy that William has done so well and reached this wonderful age with relatively few major complications
Many of you will know we're throwing a bit of an extravaganza of a birthday party at the weekend for William. The theme is rainbows. I partly picked it because rainbows are so good to look at but I also picked it because in the Bible God sends a rainbow as a symbol of his promise.
When Steve and I got married there was a particular Bible verse that kept popping up: "For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future." (Jeremiah 29v11). Throughout our pregnancy with William and the difficult times we have faced since it's been so hard to keep hope in that promise. We know our future won't always have William in it and it seems so hard to see how we will get through that. I think I chose rainbows because God has brought us this far and now as we face an uncertain future we need to remember God's promises, that he gives us hope and has a future for all three of us.
Two years ago we were in hospital having just had William and I felt so overwhelmed, uncertain and scared about what was ahead of us. We had a tiny little baby who had crashed into our world, turned it upside down forever and who was very scary to look after! All the things we had thought we'd do one day as a family had to be re-thought. I always used to say I'd take my children to disney in florida one day, that was one little thing that was probably not going to be possible. At the time I felt resentful, hard done by, and miserable.
Over the last two years we've gradually got to know William, his care needs have become second nature to us and we've been able to see his little personality grow and focus on him as a person. We are so privileged to call him our son, he has taught us so much about what matters in life. We have met many many amazing people through him. There have been some very hard times, some very happy times, a lot of very sad times but we wouldn't change it. He is one of the happiest people I know, he puts up with a lot of horrible stuff and yet he still smiles. So Happy Birthday to our beautiful boy William, every day with you is a blessing and we pray for lots lots more!
