Sunday, April 25, 2010

After the article and apointment.

Abigail dancing and spinning.

Oh my goodness this is my 100th post. I feel the pressure to make it awesome. Okay really I am going to write whatever I want because it's my blog. This blog will have a couple of streams of thought in it. Hopefully I can make it all make sense. The thoughts all stem from the article on the front page of the paper on last Monday, as well as finding out that Abigail most likely has a tumor on Tuesday. Here we go.

First off, we have had an awesome response to the article. I have had tons of people contact me. We are trying to figure out how to do a support group. Everyone who has contacted us has offered prayers for our daughter and our family. And truly I covet those more than anything else anyone can offer. We are getting recognized when we are out (I am certain being an interracial family, as well as having a one year old in glasses makes us stick out anyway). I can not believe how much God has used this story to connect us and touch people's lives. Even some of our friends who knew about Abigail having NF didn't realize the extremes of the disorder and felt better informed after they read the article. So we are feeling thankful.
Another thought has to do with how easy it is to get caught up in the minors of life. We often start to focus on things that feel significant, but in the grand scheme of things they probably aren't. One of the things that really stuck out to me was how we had been attempting to stop heating Abigail's milk before nap and bed. Silly thing to think about huh. She doesn't take a bottle, but we still give her milk in a cup that's just been warmed for about 20 seconds before each sleep for her. I had been trying to stop warming it just to drop a step. She wasn't drinking very much of it. After Tuesday I thought, why the heck am I not warming it. She likes it. It's not harmful to her, and it doesn't take that much time or energy for me to put it in the microwave for 20 seconds.
It's been one of those weeks where I stand back and try to reevaluate what's important. I am remembering that we aren't promised tomorrow, or even later this afternoon. So yes I need to wash laundry, and load the dishwasher, but I also need to read books, dance, and giggle even more. Because my beautiful little girl has no idea what's going on, but I do. And if in a month we are starting chemo, and she is sick, I want to know that the month leading up to it was filled with fun and laughter for her. I want her to remember a childhood full of mama and papa being on the floor with her, and laughter, and being told how beautiful she is. Because whether she lives to be 5 or 100, life is truly too short and precious to not live each day.
I guess the other thoughts I've been having is how truly surreal it feels to be researching chemotherapy and drug trials for my daughter. I am reading as much as I can because basically there isn't anything past the trial stage that is effective for treating plexi's. I think Thursday was when it all finally hit me. It was the first day I had sat down and decided I was going to spend all of nap reading and researching. I did most of nap. At some point though I was reading through how often they take blood for a specific chemo, and for the first time since we found out I sobbed. Like fifteen minutes of the gross sounds, face covered in wetness sobbing. It actually felt good. I cried for my little girl and thinking about what life hold for her. I cried at the thought of her being poked and prodded over and over. I cried at having to hold her while someone does something that hurts her. I cried at the fact that she is too young to understand or explain this too if she has to have chemo. There were a million other things in my thoughts as I sat there crying. It's this back and forth between knowing that NOTHING has been found completely effective for this type of tumor. If we choose surgery it would most likely have to happen multiple times. Chemo has a ridiculous amount of side effects, and none of the ones they are using are effective in all plexi's. In all honesty when I look at what everything points to if she has this type of tumor, it all seems hopeless. But through it all God just continues to remind me that my hope is not in a foundation, a doctor, or a clinical trial. My hope is not in my daughter's body. My hope is in the Lord, and in Him all things can be done!

Everything is riding on hope now,