Please don't read the following email unless you truly are committed to listening to the crazy thoughts of a desperate mother.
As I drove home tonight I was wondering what I should write about tonight. Should I tell you that over the last couple of days the first feelings of anger started to hit me? Should I tell you that when people tell me that it's okay to be angry it only makes me more mad? That when they look at me with pity I want to lash out at them? Should I tell you about yesterday as we were still awaiting results I watched the specialist hand a paper to the resident? The resident read the paper looked over to Georgia's room and proceeded to type at the computer for another half an hour as my heart was ready to beat out of my chest.
Shortly after that he showed the paper to another doctor who then disappeared for a few more minutes before finally telling me that they had nothing. Do I tell you how for that half an hour I wanted to stand up and scream, "Do you not see us? Do you really not understand that our whole lives are hanging in the balance?" Do I tell you about all of the people that tell me that once we know for sure that it's SMA I'll feel better? Really? Do they truly believe that diagnosing my child with a fatal illness that has absolutely no treatment will make me feel better? That my child will probably suffocate on her own mucous and I will have nothing to offer her but my arms and voice? The only
decisions that I will have to make are those of quality versus quantity. Or how about that I am mad at myself because I can't truly let myself enjoy my time with Calla and Maya because all I can think
about is their sister?
After saying all of this I do know that all of this anger serves not. When I came home and read all of the emails waiting for me I was reminded that all that will truly get me through this is faith. Thank
you for reminding me. You see you truly are my therapists and saving grace.
Today Mike and I finally managed to convince the doctor to turn down the assistance on Georgia's mask and low and behold her agitation seemed to ease and her oxygen levels actually went up. As I left her tonight she was rocking with daddy and talking to us. I am going to go to bed now and pray that Georgia has good night sleep and that we get some kind of good news tomorrow.
I know that I don't need to ask but I will. Please continue to pray for Georgia, that her strength and health will return. Please pray that we will get good news tomorrow. And, if you have any prayers left please pray that I will be able to let go of this crazy anger and accept whatever fate has to offer. It is the only way that I can truly be strong for her.
Love to you all,
8 Years an Angel
1 month ago