We decided to focus on getting more physically fit as a family this summer. My son was charting our progress for a merit badge. I noticed he was getting really fatigued and that he was not progressing even though we worked out every day. So when we went in for his Jr. High physical with our family doctor I mentioned it. He did some simple tests and then referred us up to Primary Children's to meet with a neurologist. We met, they did more tests and then sent us to meet with a neuromuscular specialist. This specialist has determined that my son has some major muscle issues that will take many more tests to hopefully diagnose. They are concerned that since his heart is a muscle and every muscle they have tested is affected that there could be issues with his heart as well.
This news has devastated me! I feel like I was just getting to understand how to help my son. He has ADHD, Anxiety, OCD and sensory issues. Now we have a whole new set of issues. I spent most of the month in the fetal position crying and mourning all that could be lost. I try to tell myself that it may be just find and there is nothing to worry about. Deep down I fear there is something horrible wrong. They have said that he may be in a wheel chair by the time he is 30. I feel so sad that he will have suffer with all the emotional baggage, but that he will also have physical disabilities too. As a parent there is no greater pain that I have had than watching my children suffer.
I know that I cannot live like this forever and it's not fair to my other children to let this disable me. I need to be here mentally not just physically. I started to notice my kids acting out because they needed me. So I have been going to counseling, and I do energy work. I am trying to build courage and face this head on. I feel frustrated that there is so little I can do until we know what we are dealing with.
I console myself by realizing there is a lot worse out there and I am lucky. He doesn't have cancer. He is happy and has a really good life. Here is the truth though. It is still HARD! This is my baby and I HATE that he has this trial.
I realize bad things happen to good people. If you look every family has something that is hard that they are dealing with. I know that we will come to understand and work with the limitations and obstacles that his new issue brings in our lives. We will have peace and joy in our lives again. I will just keep moving putting one foot in front of the other!
I am so grateful for a good support group. I know you understand the feelings that even words can't seem to express correctly. Thank You for sharing on FB, the blog, and in meetings. You have helped me so very much.