I'm editing this to correct some misinformation the nurse gave me. Turns out, it doesn't give me about a 15% shot of creating another boy with DMD, it gives me AT LEAST that much chance. When you are not a genetic carrier of Duchenne, you are still a "germiline carrier" as in you produce eggs with it. A friend on facebook explained it like this:
Katherine - they have no way of knowing what the risk of having another child with duchenne is. If you're a germline carrier, which all of us who aren't DNA carriers are (meaning it's in our eggs) the question is just how many eggs. If the mutation happened early on in your egg development when you were a fetus, then a larger percentage will be affected. If it happened later during egg development, fewer are affected. I am a germline carrier ironically with 15% of my eggs affected - the only way to tell is via IVF with PGD. I think it's irresponsible of nurses/doctors/
geneticists to quote risk percentages that they have no way of being accurate with. If you ever want to know about the PGD process, I'm happy to talk with you about it.
So I think it's ridiculous not to consider us carriers - because we still carry it! But the distinction is whether we carry it in our DNA or in some of our eggs. Aaaaaaaand back to the original post now.
So.........there's just more light shone on the thinking that God has a plan for this. God needs Little to have this disease for whatever reason. He needs me to have this child. It's humbling and complimentary all at once. I don't know what you have in store for us, or what You need us to carry out, Lord, but I pray that I do what You need. I pray that we allow ourselves to be guided in the way You see fit. I pray that we can bring other to You through our actions and our faith.