I was recently reached out by two other mothers that have found my blog while they were searching about Catel-Manzke Syndrome.
One has a four year old little girl and was diagnosed this summer, and another has a little boy who hasn’t been confirmed yet.
I’ll admit I’m relieved that I actually have other families I can reach out to now and talk to about different things, even if it is something little. Sometimes when you have a child with such a rare syndrome it’s hard because you don’t know what to expect or how certain things may go. With having these two in the US it’s easy to talk to each other and discuss things that some parents may not know about. With the older child we can compare things and I get a feeling of how John may grow up. With the younger child, both of us can give that mother a feeling of what may come.
Don’t get me wrong. I treat John almost just like any other normal child. However there are some things I know he can’t do or would be hazardous to his health so I refrain from those activities for him. It’s been hard watching him struggle at times with even the little things we do in our normal day to day routine.
John is a very determined, stubborn, typical two year old. He lets us know in his own little way that he needs or wants something. I’m am glad he’s able to do that since we didn’t know what he would or wouldn’t be able to do.
I was recently discussing with my husband, Thomas, about having that “everything is going to be ok” moment. He had it some time ago when our journey with John first began. During that month long hospital stay back in May 2014 he’d drive back and forth from College Station to Temple on his way to McLane Children’s. He said there was a sign someone had placed on their fence which read “The Lord will provide.” He said after reading it he felt a great sense of calm and peace. He said at that moment he knew everything would be ok. Each time he’d drive past that sign he would be comforted.
My “everything is going to be ok” moment came much later. It came when I was reached out by the other mother whose child was confirmed with Catel-Manzke syndrome. It finally gave me that glimmer of hope I had been searching for. I don’t think she has realized how much it meant to me by that simple message of “Hi, my daughter was recently diagnosed and she is four.” It gave me peace of mind that John will be ok. He’ll have struggles, but he should grow up to be a fairly normal child. Minus obviously the little things we are already working on with him. I don’t fear he’ll always be dependent upon us as a family to take care of him. As long as he progresses, he should have an independent life.