Mixed up emotions...

I don't know what to think or feel tonight. Abby's muscle biopsy came back. For those of you newer to this sight or following our family, Abby had a biospy done Dec. 5th that was supposedly going to give us a deffinitive diagnosis as to which form of mitochondrial disease the kids have. This would help in so many ways in their care and treatment. Today they told us, her biopsy came back normal. I started to get excited until the words came "We are so sorry. we don't like to tell parents this. your child has mito but is in that 1/3 of children who may never know what form they have." My heart broke. When she told me this, I had flash backs of standing at Joey's bed side in the hopsital and getting those first words of Mito and that it could take your child's life. i remember her looking in me in the eyes saying "some kids we never can find it and we can't garuntee anything either way. It just is better when we know because we can expect what we typically see." I had in my heart that we were going to know and now we know nothing. Many have not understood this today. We have had comments across the board. Our hearts ache. My baby girl went through something that has left her emotionally not the same and we know NOTHING!!! It hurts so much. Not to mention, this makes her treatment more difficult because we now have NO CLUE what direction this COULD go or even which parent it came from. I asked the lady today what this means. She said that we could move forward with some MT DNA sequencing but that insurance probably would not cover it so we would have to come up with $4,000 to do it. There is no way... I don't know where we'd get that kind of money. The other option would be to pack Joey (Because he is the more severe of our two, he'd be apt to give a better sample) up and fly him to Atlanta to do a fresh muscle biopsy... but AGAIN they said that it would likely say the same thing. We know from Joey's that they have a form of a myopathy but the rest of the biospy wasn't usuable because there wasn't enough tissue. If we could get a diagnosis from one, we'd have it for both because they are siblings it would be the same. So, I just don't know. I don't think I have ever felt this let down or dissappointed. I feel lost as well not knowing who to even begin to talk to. I talked with a couple of mito mom's today that was refreshing as they understood the upset and let down we are feeling. I just feel at a loss. As their mommy, I feel like it is my job to find out, my job to push, but also as their mommy, I can't take watching them go through one more thing. I'm tired, they are tired and it HURTS all of us. Not to mention, putting either of them under is so frightening because they don't handle it well. I just wish I had the answers. This is one of those days I wish God gave me explicit directions as to what to do next. Do I stand back and wait to see what He does, or do I push forward and put them through more. Please pray for all of us tonight. We love you all. Thank you for listening.