We got the diagnosis on Justin, it is Mitochondrial Myopathy. It is a pretty rare and complicated disease. I feel like I have been in a fog since the Dr. told us, this was so much easier when it was me. It seems like it is all me and Marce talk about right now, our new reality. Reading about the disease is my new past time. We are heartbroken. Our son is this big, strong beautiful young man and we are devastated that he has to go through any of this. Watching him grow up into this man right in front of our eyes has been such a gift, I just wish I can take this from him and say "go on mejio, I will do this for you. The Dr appointments, the tests, the physical therapy, the pain, take the medications, all of it" But I can't. All I can do is stand next to him and hold his hand and tell him how much I love him. It just doesn't feel enough. We will encourage him to stay strong, enjoy every opportunity that comes his way. Live a great life right now! Don't wait for anything! Keep making that amazing music that you do so well. Keep your great sense of humor. Keep working to reach your goals! Keep inspiring the people around you. This disease will not stop you! It does not define you! You will always be the wonderful person you are now. And we will always love you!
Monday, July 27, 2009
Justin
We got the diagnosis on Justin, it is Mitochondrial Myopathy. It is a pretty rare and complicated disease. I feel like I have been in a fog since the Dr. told us, this was so much easier when it was me. It seems like it is all me and Marce talk about right now, our new reality. Reading about the disease is my new past time. We are heartbroken. Our son is this big, strong beautiful young man and we are devastated that he has to go through any of this. Watching him grow up into this man right in front of our eyes has been such a gift, I just wish I can take this from him and say "go on mejio, I will do this for you. The Dr appointments, the tests, the physical therapy, the pain, take the medications, all of it" But I can't. All I can do is stand next to him and hold his hand and tell him how much I love him. It just doesn't feel enough. We will encourage him to stay strong, enjoy every opportunity that comes his way. Live a great life right now! Don't wait for anything! Keep making that amazing music that you do so well. Keep your great sense of humor. Keep working to reach your goals! Keep inspiring the people around you. This disease will not stop you! It does not define you! You will always be the wonderful person you are now. And we will always love you!
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2 comments:
Thank you Amy for being willing to share such strong emotion and truth. I wonder if you had to go through CANCER and show us all what grace under fire looks like so that you can help him through his disease. You are uniquely qualified to understand his pain. You love him with your soul and that will help you do what you have to do. I am so proud of you for letting him go out and live/fly/fall/fail/try again. Once again my little sister teaches me about life.
God is the same yesterday, today, and will be forever.... Thank you for sharing.
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