Tuesday, June 30, 2015

Grace, By God

How do you keep going?

I am not sure. It does feel like some cosmically cruel joke that horrible situations like ours do not kill you. No, you must keep living and fight on. As much as I want to curl up into a ball and both cry and throw up at the same time tiny voices echo down the hall, "Mommy, I want to get up now." Time for breakfast. "What are we doing today?" Oh right, we need to do stuff...life goes on. I tell myself that I have the girls now, that they are happy and laughing and alive. That I must live. So I do. Each time life gets a little worse I try to find a new normal. I fiercely protect these girls and their childhoods, they will not be forced to grow up too soon, they will have fun and there will be laughter.

Why does lighting strike twice in the same family? No idea, you tell me. Seems like our quota for shitty things to happen has been filled...

I cannot bring myself to type out what we are dealing with for Gracie. It is on the Facebook page. I will say that we are heading to Stanford this Thursday to see the West Coast specialist for brain stem surgery. I will have more information after talking to him.

Thank you to everyone rallying around us, we need it now more than ever. The meals, the housecleaning, the fruit baskets...it all helps us live day to day. Right now I am having a hard time doing normal things like cooking and cleaning. My time is consumed with appointments, talking to different specialists on the phone, and trying to create normal days for the kids. It helps to have others to step in, if you message us and I do not get back to you right away just hang on, sometimes I get caught up with docs.

Yesterday was hard all around, it was not a good day to pick a fight with us or challenge...but that is exactly what Emma's Oncologist did. You messed with the wrong Mommy. Yesterday was not the day to lecture Brad. The fact that you said that we should not be getting second opinions on Emma's treatment or Gracie's surgery is mind boggling. The fact that you told him that Emma's surgery was a bad choice and wasted time is unfathomable. The fact that you told him that we need to blindly trust the team you have is negligent. You were wrong too, as you were saying these things to Brad I was with Gracie in Neurosurgery who told me that contact contacting the doctor at Stanford was not only the right choice but she would follow through on the referral herself. Then she called him right then and there to work us in this week. You are not special, I get second opinions from all doctors for my children before subjecting them to chemo or surgery, that is being a good parent. The rant you gave was unprofessional and uncalled for, are you really so confident in yourself that you believe you know better than anyone else in the country? Really? To say I am mad is an understatement. Consider yourself removed from the team as soon as I line up a new doctor. I needed to have that said because I know other parents read this blog who have sick kids. Do not let a doctor bully you. Follow your motherly instincts and do what you feel is best for your child. Be the Mommy Bear.

Gracie is a miracle since birth, she has overcome so much already. We named her Grace because she was alive only by the Grace of God. We still believe this to be true. I stand by Grace and Grace is by God. Amen.

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