Words are hard to come by tonight. I'm angry today. After many calls to the doctor knowing our results were in, we finally got them. Everything is negative or normal. No Trisomy 13, 18, or 23. No cystic fibrosis, no fragile x, no anything. My karyotype is completely normal. I'm sure many of you are thinking this is great news, but it really isn't. The doctor warned us that if everything came back negative it could be any number of differential diagnosis, all with worse outcomes and fewer live births. "It" is killing me. I so badly want answers. I want to have something to tell people. It kills me to say Mary has this, this, this, this, and oh ya this. I want a name. I want to able to tell people that she has ____. If they want to know what that means, they can look it up. If they don't care anymore after hearing a name, great then I don't have to explain any further. A prayer was not answered today and that makes me mad/sad. I was praying so hard for Trisomy 18. That would have been best case scenario. Nope. I know God has a plan and purpose but I am more heartbroken. I honestly don't even know where we go from here. Yet again today we were encouraged to "voluntarily interrupt pregnancy". NO NO NO NO NO NO! Mary is our precious baby and perfect gift from God. Tomorrow I will call all the doctors again and try to figure out whats next. We will have more appointments where we have even harder conversations.
I have to remain realistic. I want to believe in a total complete healing (and continue to pray for this) but I cannot deny what we know to be true. I know that she does have significant brain abnormalities, she has something with her heart, and bowels. I have significantly low amniotic fluid.
I made it through work today. Thank you God. It was not easy. I physically felt okay, but I am really struggling to keep my head in the game. I feel guilty for this. I need to find motivation and inspiration somehow. My students desire it, but yet I struggle.
Lastly, we met with Ryan House today. It was amazing and it is definitely a blessing to our lives. I will expand more on this later.
Thank you for your continued prayers and patience with me, even on days when I'm grumpy.
Jolee, I am so sorry you did not get the answers you were praying for. That must be so very hard. I think not being able to put a name to something makes it even worse at times. We are so used to being able to explain things - this is something that is perhaps unexplainable. I still believe that God chose you and Sam to be Mary's parents for a reason. She needed the love that only the two of you could give her. My thoughts and prayers continue to be with all of you. <3 Heidi
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