Monday, December 20, 2010

The opposite of faith

"If faith is willing to surrender to the unknown, which I believe it is, then the opposite of faith is not cynicism or disbelief. The opposite of faith is fear." Hope Edelman

It's funny to read the post from a week ago and seem like I am emotionally and spiritually in such a polar opposite place today. That's one of the things I love about God's grace. My feelings never alter the reality of His goodness to me.

Yesterday I left my family. I was being horrible, and I know enough about how out of control I really am in this cycle, so I put myself in a major time out. I went to the movies. For some reason the movies is like the airport or the beach for me. I feel like I am completely separate from my "real" life. I feel like no one can "reach" me. I like to sit in the dark and get lost in someone else's story for a few hours. My husband is a prince. I do it so rarely, and he know when it needs to happen. He says, "GO." The mother in me lays out Delaney's shower stuff and decides what they will eat and leaves instructions on homework left to do, and then I bolt.

Think about the worst PMS or PMDD you have experienced or heard about and multiply it by one hundred. My head is spinning all the time, and I feel like an elephant is sitting on my chest. I cannot sleep even after taking an ambien and ativan. I toss and turn and sweat and my heart races. I begin to cry suddenly and for no reason. Oh, and I am the meanest I have ever been in my life. I had my second Lupron shot on Thursday morning and by Friday afternoon the black cloud had settled over me. Saturday the physical symptoms began again. I felt this way last month, but just when I thought I couldn't take it everything evened out. I never considered I would have to go through this every month for each shot.

I have my appointment at the Cleveland Clinic on Wednesday morning. This is not my first time at the rodeo. I know how it will go. She will review my history and records and pop in the disc and look at the pictures from hysterectomy, the ones of the endo left on my other organs. She will listen to my account of how the pain is even worse since my surgery. She'll offer to go back in, another surgery, maybe it's adhesions, maybe there are new growths we could get with a laser. She'll tell me there are new things they are trying now to try to coat organs and keep new scar tissue from forming. And, I can see a colorectal surgeon. We could resection my bowel and cut out that big ugly spot of endo in the middle.

Here's the thing. I'm not afraid to do any of that, but I have a gut feeling it won't help. I have been overwhelmed with the thought of trying something different. I don't know what exactly. Like my search for help for Danica, my instincts told me there was something deeper wrong and sent me on what some felt was a "crazy" pursuit for answers. Although the jury is still out to some extent on the results of Danica's surgery I know in my heart she is so much better and safer than she was before. I know I did the right thing to not wait and watch. In this same way I believe at 35 years old I cannot give in to this cycle of surgery and chronic debilitating pain. I have to believe there is other help somewhere.

What I AM afraid of is Danica getting out of this brace and walking and every prayer offered for her being answered, and I am left in bed curled up in a ball. I can't miss any more life. The past week Danica's desire to get out of this wheelchair has become stronger than ever. Tomorrow marks twelve weeks since her surgery, three months. It's been twenty one months since she woke up from her nap with a crooked neck. It's been over a year since her first decompression. She has grown from a baby to a little girl, and our entire lives have been about what we could not do and what we had to do. Yesterday she said, "I NEED to jump." Last night she said, "I have to go to preschool now and read." This morning, She asked, "But WHY can't I walk? What's the reason?" These questions come fast and furious now. She feels healed. She is in the least amount of pain she has felt in years. She is strong and ready to go. If Dr. Crawford releases her to walk at our appointment in Cincinnati on January 18th, I want to be there for every second. I have a limited amount of money until I have to go back to work. I have a million things I want Danica to finally get to experience for the first time or for the first time without pain and fear. I NEED to be well.

I'm asking you to pray specifically that I will not be afraid. I need the courage to explore outside traditional medicine and consider there may be other answers for my pain and the growths inside me. If necessary, I need to be brave enough to let them go back inside and trust more days in bed are somehow part of the story God is writing for me. My family needs grace to love me through these months of Lupron. I am truly a crazy lady. The way Dan and Delaney have embraced the nuts part of this and are even able to laugh with me about how cookoo I am is amazing to me.

We will keep choosing life. Our hope remains.

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