This picture is my inspiration for today’s post. It was posted by the National Marfan Foundation on their facebook page this morning. Everyone starts out in life the same way and everyone ends up different. Vivian is obviously unique, but so am I and so are you.
Yesterday we had an appointment at Hopkins. This time we met with a Nurse Practitioner in the genetics department that specializes in Marfan syndrome and connective tissue disorders. After introducing herself and a resident that was shadowing, she kneeled down beside Vivian in her stroller. Vivian reached over, put her hand on her arm and turned her head sideways, giving the woman a smile. I knew this was going to be a good visit! We were basically there to see how frequently we needed to follow up with a cardiologst. The greatest concern with Vivian, in terms of her connective tissue, is the possibility for an enlarged aortic root. Since size can change with development, just because hers is normal now, does not mean it will still be as she ages. We will be getting an echo cardiogram annally to check the growth.
I had previously been told that there was another patient at Hopkins that was similar to Vivian. Naturally, I asked about said patient. There is a six year old boy out there that is also missing the part of chromosome 15 that produces fibrillin! We were informed that he is currently in school, he did have some developmental delays, and did have problems with his ankles/feet, as well (future post will explain). When I heard this, I felt a strange sense of relief. There was another little one (sort of) like baby girl out there!
Vivian is currently on this kick where she loves to look at our photo albums. She will go into my office and flip back and forth, over and over, and be perfectly content. Dave asked me the other day if this was “normal” for kids. I have no idea, but it doesn’t matter. I’m not going to stop her from looking at photo albums, just because it’s not “typical” child behavior. I’m going to embrace it. I’m going to sit on the couch with her and look through them with her. This holds true to anything in the future. Whatever interests her, I will support her. Even though it may not be “mainstream” or what all the cool kids do, every child deserves the right to be happy. If doing something a little different makes them happy, then go for it. As a parent, I feel I have no right to govern what activities or interests my child should or should not do. Let them be who they are.