Emma & Daddy last year |
No one wants to be told your child has a brain tumor, no one wants to be told she actually has a total of six brain tumors and no one wants to hear the words "inoperable" but that is exactly how we spent Christmas Eve last year. The next day, Christmas day, Brad and I spoke in hushed tones about Emma trying not to project too much into the future.
A year later we have seen three more MRIs, several tests, a surgery, glasses and weekly chemotherapy. Our lives are dramatically different now. In many ways I feel stronger and in several ways I feel beat to hell.
2013 Christmas picture |
This year we have a name to fight. We know what she has, we know the survival rates, we know the drug protocol. There is freedom in knowing. If anyone reads this who is still in the testing phase and you are afraid to know the diagnosis remember me saying this, there is freedom in knowing. Not knowing causes those panics in the middle of the night, the "what if" panics. Your mind can wander to even worse conclusions then reality. It is always better to give your monster a name.
This year we were also blessed with help. Amazing people and organizations have sent Emma things to cheer her up this Christmas and help for the family. We have Disneyland to look forward to and Hawaii through the Make a Wish foundation in a month. Those things keep us going and looking forward to happier times while we sit in the Oncology department getting meds.
Yes, sometimes...no often, I wish this was not my life. That it was all a horrible nightmare and I will wake up on Christmas last year with three healthy children. That I will tell Brad this horrible dream over coffee and he will reassure me that it never happened. Not to us. But I know that is not true, this is our life. This is what we fight. Everyone has monsters, some are big, some are small, some are
Our family this year |
I know this is not a very jolly post for Christmas Eve, it is a much more sober Hallelujah. A Hallelujah that we are still here fighting and we have happy times ahead in the very near future. "And Love is not a victory march. It's a cold and it's a broken Hallelujah." Jeff Buckley
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