Friday, November 21, 2008

Forgetting to remember

The past five months have been hard....probably some of the hardest times I've ever lived through. There were days where I didn't think my daughter would live through the treatments, days where I wasn't sure if she could go one more day without eating, days where I couldn't feel the presence of the God I cried out to so desperately. Those days are over and I have had the pleasure and the joy of seeing my little Chunks-a-lot thrive and grow in ways I never thought she would. The happiness I see in her face delights my soul and she is such a sweet blessing in my life.
Yet it's interesting how quickly the memory of the hard days has faded from my mind, I've been surprised by my sub-conscious eagerness to forget those days and weeks that we somehow survived. I can remember crying out to God sometimes on an hourly basis, begging for His mercy, pleading for His intervention. And somewhere along the way, God answered our prayers; for here she is, happy, thriving and improving daily. And instead of increasing my praises to the God that has healed her thus far, I've slowly diminished in my prayer life.
It's funny how God reminds you, continuously, that you still need Him. Two days ago, my little Chunky girl started having problems with her balance again. It seemed to happen very suddenly and her clumsiness seems to plague her once again. She has become more irritable, as well, and it's interesting how quickly I hit my knees when this change occurred. Obviously, I am terrified that the tumor has started growing again and is causing her problems.....and it seems to be a nightmare I can never quite wake up from. This problem with her balance has happened so many times before and it's always resolved itself without explanation, but this time I feel my fears rising up in me like they used to in the beginning of this journey. That horrible feeling of despair, those constant questions of "what if?", the complete and total vulnerability I have at the realization that her life is in the Hands of the One who gave her to me.
It's situations like this that make me feel like a child in the grand scheme of things. It's just like I can teach my son something profound and I will see him latch onto the concept in that moment, but give him a few days and he will completely abandon the knowledge he's recently acquired. His mind is still immature and he's not done growing mentally and emotionally....that's how I feel sometimes in my relationship with Christ. I feel like this journey was meant to teach me something and every time I start to learn it, things get too easy and I forget to stay on the path that God has laid out for me. It makes me feel so juvenile to realize that I need to be constantly reminded to depend completely and totally on God. And as scary as these times are, I am thankful that God keeps putting things in my path to help me remember who's running this show. Her balance might just as suddenly improve tomorrow and she might just go back to being the happy, bouncy toddler she's been lately, but in that instant I should hit my knees in the full assumption that I have just witnessed a miracle. For how many times has God spared her so far? How many times has He given her one more day? How many miracles has He already performed that I just take for granted? Her life seems so fragile to me and I am obsessed with making every moment count....I never want to look back and wish I had done things differently. And in that same passion I should make sure that I never let a day go by without thanking Jesus Christ for giving me one more beautiful day with my precious little girl. The truth is, I have no idea how this story will end but I don't ever want it to end with me forgetting to remember the hundreds of miracles I've seen through this journey. I've always said that if she suffers through this and we do nothing but drown in our own sorrow then her suffering will be in vain, but if we make this count, if we make sure this makes a difference in some body's life for eternity, then we have honored her suffering. And in this battle, in this fight, I don't want to waste another day forgetting what it is God is trying to teach me. It's not just a Miracle for McKaylee, it's a miracle for all of those who have been touched by her story, including myself. So as I drop to my knees in another desperate prayer, I am reminded once again of how safe I feel in the arms of my Savior. Knowing He will heal her, one way or another, and finding comfort in the fact that I can always come to Him....even after forgetting to praise Him in the good times. I always seem to find myself in the darkness, yet when the light comes pouring in, I all to quickly forget the One who's holding the lantern.

Sunday, November 16, 2008

The fight continues

Last night I found myself overwhelmed with emotion. I started looking back at all of the pictures we have taken since our very first day here at St. Jude's. Although I can remember those first days very clearly, in a way they seem so distant....almost like they happened years ago. I can remember feeling like we would never reach the end of our treatments here in Tennessee, the days sometimes felt endless and yet now that we are just around the corner from finally coming home for good, I feel somewhat sad. Leaving here will be hard and I never thought I would feel that way. Everyone knows my little Chunks-a-lot and they all wave to her and make over her as she toddles down the hallways of the hospital. She enjoys the constant attention and is sure to greet every friend and stranger on her path. I'll miss the tight-knit family feeling that exists in this place, I'll miss how much we fit in here. For back at home, my daughter is different...she's sick...she's well-known because she is the little girl that's fighting cancer. And not that people aren't warm and welcoming back at home, they are. But sometimes it's just hard to be so different. All the children are sick here at St. Jude's and you can pass their parents in the hallways and see that same look of desperation on their faces that you feel in your heart. Yet I come home and feel overwhelmed by the pity I see on people's faces when they look at my little Chunk, the shock I see in their eyes, the whispers I hear behind my back. Don't get me wrong, I'm not saying that I don't understand it because I know that people are curious and that's fine, but that doesn't take away the hurt. And I guess it's a hurt that I haven't had to experience here because my little girl just looks like all the other kids. I think I look to this place like a haven, a community of hope, and my attachment to St. Jude's runs deep within my soul. I think I'm also scared that I'll forget.....forget to relish the simple joys of life, forget to cherish every moment of every day, forget to appreciate my children for the wonderful people they truly are. I'm scared I'll get caught up in the ho-hum of "normal" everyday life and I'll forget all the lessons that I've learned here....and I don't want to forget. So as we start packing up our things to make the journey back home, I suddenly feel so lost. I wish I could say that I know where God is leading us and what He has in store for us, but I don't. Will the tumor stay stable forever? Will she just go back to being a bouncy and energetic toddler? Will life just suddenly go back to the way it used to be? What if her tumor suddenly starts growing again....will they be able to control it again the second time around? What happens next....I guess that's my biggest anxiety. As much as I know I need to let God take the reigns, it's still hard for me to give up control of my little girl's future. He's gotten us this far and she's still alive and happy and doing better than ever so you would think I could rest in the mercy of the Savior who brought us where we are today. Instead, I find myself scared to move forward. I wish I could live in this realm of hope, vulnerability and ever-growing joy but I can't. So I'll do the only thing I can do, take one step forward. Knowing somewhere in my heart that God IS still leading us...down the path that He has chosen, to a future that only He knows. And I'll continue to learn the lessons necessary to make it to our final destination and only then will I understand all that it took to get to the final page of this book. The fight doesn't end fact I somehow feel like it's only just beginning.

Thursday, November 6, 2008

My little bundle of joy

I have the most precious, bubbly and girly little toddler! This is what I get to play with everyday.....jealous?