I have had the good fortune to recently have been invited to join an online support group for families of children with Mowat Wilson Syndrome. As I previously discussed, joining this group has helped me to begin to analyze myself. Apparently, I wasn’t completely dealing with Parker’s diagnosis of his syndrome. Oh sure, I would tell people the diagnosis and I would rattle off a few attributes of people with MWS; but, I never really dealt with what having a diagnosis of MWS really meant.
Since my last blog post, I have had the opportunity to find out more from other members of the group about their kids and what they have been going through. Some of what the other families have been facing are exactly what we have been dealing with as well. It is somewhat comforting to know that the others go through what we go through. Not that I wish any of this on anyone else; it’s just somehow easier knowing that we are not in a boat by ourselves. When we discuss our children and what has happened with them, I can relate completely. Of course, we all have variations of the syndrome and nobody is exactly the same. It’s just that there is so much that is typical about the syndrome, and the fact that only about 150 people in the world have a diagnosis of MWS puts us into a very exclusive club. Other people that are members of other syndrome “clubs” can relate to some of what we deal with and we in turn can understand some of what they go through. But, only this small global group of parents can truly understand what it means to have a child with Mowat Wilson Syndrome. Some typical attributes of MWS are the distinct facial features, the slender body type, bowel issues, epilepsy, limited speech and more. A big issue that we all seem to have to encounter on an ongoing basis, is the seizures. They are also the scariest part of the syndrome. We all have the same fears for our children. We worry about them having a seizure and our not knowing about it. We worry that we might not be able to stop the current seizure and all subsequent seizures. We worry that brain damage might occur. We just worry. I must say it is comforting to share with others that truly get all the worries that I have, knowing they have them as well.
Another part of getting to know the other families is appreciating what Parker does not have. We were told initially that he should be tested for some other issues that he hadn’t shown signs of, but, many with MWS have. He did not have any of these problems and we were relieved. It never really hit me that we had some real reasons to feel lucky. Maybe because it was all just a theory in my head and not a reality I had personally experienced. We knew that cardiac problems, kidney problems, and Hirschsprungs disease were something to be happy to not be a part of Parker’s condition. I am ashamed to say that I never thanked God for this blessing! I think I was too busy dwelling on what he did have to overcome and it felt so immense. After hearing others speak of their problems, I am so grateful that Parker does not have any kidney, heart or horrible bowel problems associated with Hirschsprungs. I think that is probably one of the most wonderful things about the group. I can see what I have to be grateful for and focus on my blessings rather than on what we don’t have. The MWS group has put my life into perspective and allowed me to be happy for all we have and not feel sorry for what we don’t have.