When I began thinking seriously about starting this blog I decided that I had to be completely honest. For those of you who know me in real life you will know that I am a straight talker who doesn’t deal well with ambiguity. However I’ve thought long and hard about this post as it’s a tough one to write and I am sure that for some people it will be tough to read, but here goes ….
Smith Lemli Opitz syndrome ( SLOS) is at times a hideous syndrome. People with SLOS are born with an inbuilt error of cholesterol metabolism. When we first received the diagnosis I didn’t really understand how crucial cholesterol is , for example cholesterol is vital for the production of cortisol which helps us fight infection, it’s also an important factor in the production of seratonin ( the happy hormone) I mean I could go on but it’s probably easier for you to Google SLOS. As it’s a syndrome the severity varies. Some of our wonderful SLOS families have had to watch their children fight and sadly gain their angel wings, my heart breaks every time this happens. It makes me terrified for my own precious children. Jack and Lucy take a raft of medication several times a day , they have lots of blood tests to monitor lots of important things like their kidney and liver function, their cholesterol levels from the artificial cholesterol that they take , iron levels etc. They mostly deal with all of this very well.
Now don’t get me wrong Jack and Lucy are two of the funniest people that you will ever meet. They have a different way of looking at life and every day Ian and I are crying with laughter. However there is a very different side to them. Both are in secondary mental health services, meaning they see a psychiatrist regularly. Both have the most horrific anxiety which is at times completely disabling, sometimes Lucy can’t leave the house. In addition to the anxiety Jack also has Bi polar disorder, he has the rapid cycle kind so extreme highs and lows in short succession. He also hurts himself, and I mean really hurts himself by thumping himself in the chest and biting his hands and arms. Whilst he is doing this he screams the most horrendous things, I’ve lost count of how many times I’ve been called a c**t , of course I don’t take it personally and he is always sorry after. It just breaks this mammas heart to watch him and be helpless to stop him. When he has calmed down I nurse him like he is a baby again , which of course he still is in so many ways.
But I am hopeful that one day we will find the right medication, I am hopeful that we can get these demons under control. Until that day we will continue to love him unconditionally, support him and comfort him. Also we have a great support network and I am a tough old bird 😉