We’ve known that Liam has 18p- for almost five months now, and while there are still days that it’s difficult to accept and be okay with it, it IS getting easier to embrace it. In the beginning, Will (husband/daddy) and I couldn’t stop thinking about the far future and what it might hold for Liam. Will he be able to have a conversation with us as he gets older? Will he be able to read? Will he ever have close friends, and is it possible that he could fall in love and get married? Is going to college completely out of the question for him? Questions about the future like these began to take over our minds, and it wasn’t good for any of us. I think that this type of reaction is normal when finding out such life-changing news, but every little thing that Liam did or didn’t do ended up having repercussions in our minds about some huge step in the future, and that wasn’t fair to him or to us.
The thing about 18p deletion is that it’s hard to find anecdotes online about people that have it, because it is very rare. 1 in 50,000 people are born with it, and that means there isn’t a large online presence of people posting about either themselves or their children with it. (Which is one of the reasons that I wanted to start this blog.) But we were able to find some important information about it from his geneticist, and then from The Chromosome 18 Registry and Society, and other various resources online. One of the most common challenges that people with this deletion face is trouble with speech– that seemed almost a given when it came to any story we read about or video we found of people with it. We are lucky to know that Liam has it at such a young age, because he has already begun speech therapy services at one year old and they are already making a difference after only a couple of months! But he will likely still have trouble articulating his thoughts and forming words clearly in his life, and that’s okay. One of the major things that I have learned in doing my research is this: we have no idea what Liam’s potential is! I’ve read blog posts written BY adults with 18p-, telling their stories and sharing their accomplishments. One such lady was in her twenties and engaged to marry a man named Liam (ha!); another one was accepted into a university in the UK and about to attend college; other information is often provided by the parents of children with it, and I’ve seen varying degrees of challenges and accomplishments there, too. The point is this: we just don’t know what Liam will be able to achieve in his lifetime, and we can’t use this label of having “special needs” as a box that will stifle him. I want him to reach HIS fullest potential and achieve HIS personal goals as grows up, not mine or Will’s, and not the school system’s. I want to work with him in areas of physical and mental development as much as I possibly can and then see where HE goes from there.
I don’t hate the word “special” when referring to people like Liam, but it does rub me the wrong way at times. He is a special child, yes– but he would be either way, and so is my daughter, and so are your children, etc. He has special needs and will likely be in special education in school, but I don’t want him to only feel labeled as one thing. We were terrified at first of our family having to live a “special” life and go through more challenging experiences than a lot of people, but we are learning to embrace it. In some ways now, I’m excited that we get the opportunity to live a unique and different life than the average family! We know that there will still be so many difficult times and hardships to face (as there are in every family), but Liam has given us an opportunity to become better people, to live a unique lifestyle, to celebrate the tiny little things in life, and to love a very special little person. We are the ones that get to raise this cool little dude, and help him, and watch him grow into a man. For that, I am truly excited!