Thursday, June 19, 2008
Surrender and Sunshine
Several months back, I believe at the beginning of Zoey's ACTH treatment, I was having a heavy conversation with Caitlin in my bedroom.. Heavy in the sense it was all about the emotional coping I was or was not doing at the time, regarding Zoey and the new journey of Infantile Spasms we found ourselves traveling. As we spoke, me usually with frustration, fear and anger dominating my tone and Caitlins tone usually coming from strictly a calm spiritual perspective, I found myself again talking of surrender. Grappling with finding myself in a place of surrender where Zoey's medical state found her and us in again. Feeling as if we, I, must once again roll over and take whatever was thrust upon her and saying AGAIN, "It was just the way it was." I was so very tired of surrendering to something, anything, once again. As I said surrender, for the umpteenth time, Joe happened to walk in the room. He proceeded to say," Hey, surrender is when you do this..." and he thrust both arms sky ward. At that very moment, surrender took on a different meaning for me. As I saw his little arms fly up I realized it was exactly what I must do. Throw my arms to the Heavens and surrender myself, Zoey's situation, our lives to God. I know that prior to the seizure diagnosis I SAID my control, her life, was in the control of no one other then God, but I wasn't truly living my words. From that day in my bedroom and beyond, I have really tried and in my opinion, others might differ, but in my opinion, I think I have surrendered it all, wholly and completely over to God. The simple words and action of my 4 year old gave me a moment of clarity and the gift to rethink my definition,as it applied to me, of surrender. So yesterday when we spoke to the Dr. at UCLA and our neuro at Children's I had to put my new found relinquishment of control or surrender, to action. We were told that more likely then not that Zoey will have some type of seizure disorder for the rest of her life. Disorders that we hope can be controlled by medication but never cured because of the damaged portion of her brain. It is the consensus of all to not rush to surgery but surgery will continue to be an ever present possibility. As long as the seizures are being controlled and the spasm/hypsarrythmia are not present, then we stay the course. It is not as if I was wanting surgery but ..... if that could "cure" her seizures then in some weird way, it sounded logical. It sounded like a fix of sorts . We as parents are always trying to fix things. Even in the face of the un fixable. For now though, she is doing really well, but for" NOW" is the key word where seizures are concerned. Seizures can change on a dime. That's the scary part. I was not given any guarantee, there are never guarantees in neurology,that her hypsarrythmia would not reappear or how long we could hope for the Topamax to continue the job it is currently doing. We as parents are looking for clear cut, concrete answers and it just is not going to happen. I feel I now have 2 really huge things lurking out there that hold a very real possibility of happening. Both in their own right, terrifying. One, re emergent of seizures and two, her blood disorder turning into leukemia. Two nasty possibilities both of which I have no say or control in. My surrender continues. I turn to God to allow me the wisdom to focus our lives on the things I do have control of and the rest throw up my arms and give it all to Him. I once was at a Women's retreat and we participated in this one exercise. It involved us bringing attention to all the things in our lives, past, present, future, things we were finding were weighing us down as we continued to fruitlessly make sense , logic and peace with them. It went something like this: We were told to think of all those things, the good , the bad and the ugly, gather them together, lift them up, bless them as Holy and let them go. It had arm movements that went with it and I found it then and find it now, to be so freeing. Much like the idea of raising my arms to God in constant surrender and letting it go to Him. In many ways the Needham's, all of us , are in a decent place right now. One we are grateful for even with it's uncertainty. Because in the end , even if you are not, have not and never will find yourselves in the life circumstance that we have, aren't all of our lives filled with uncertainty. Most of us know this. It is a matter of implementing that knowledge into our daily lives. Zoey is good today. Really good. We never take that for granted, ever. This summer begins quite differently then last. We are grateful for the moments that allow her and the rest of us to bask in some normalcy. Unfortunately we cautiously bask in that normalcy but know how blessed we are to at least be basking! Zoey is wearing a onesie today that says... Sunshine On My Shoulders Make Me Happy. Sunshine, for us this summer, is of course the actual sunlight that streams from the sky that we are able to feel upon our faces daily. That sunshine seemed to elude us through circumstances of last summer. But for us ,in this moment, it is also the light of God that illuminates our life daily through the gifts He bestows upon us that warms our souls as well as our earthly bodies. For us, Zoey is our sunshine, she lights our way and or lives and radiates such strength that it allows us to see each new day and the beauty it holds. Her sunshine make us all incredibly happy!