Saturday, August 30, 2008

The Reserve


Sometimes I have these days where I feel empty, like totally void of any normal human emotions. When Chunks-a-lot is having a rough week, she needs me on a level that is almost unrealistic. She clings to me desperately, follows me around obsessively and calls out for me immediately anytime I leave her view. Most of the time I find myself doing everything with her on my hip, her face buried in my chest or on my shoulder, constantly craning her face in mine to remind me that she's in pain. It's overwhelming to say the least. Even at night, as most are sleeping, she's screaming out in pain, tugging at me all night looking for some comfort as we both struggle to find some rest. Sometimes I have to pray hourly for extra patience on those hard days or for the energy to carry her one more step, but God always sustains me. The only problem is my life doesn't begin and end with her, I still have a husband and a son who desperately need me in different ways and on different levels. That's where I start to give out. I feel like I wait all week long to see them and then when they get here, I'm almost too exhausted to give them the energy they need from me. It's this weird feeling of being torn in all different directions and wondering when you're finally going to break. Talks-a-lot likes to do just that, talk a lot. And he needs me to focus on him, to answer his questions, to dive into the depths of life's biggest mysteries. When he's here, he holds my hand constantly, almost like he's scared to let go sometimes and it saddens my heart to see his desperation. He was once my baby, the child I cradled each night, the chunk I carried on my hip and he got all of me everyday...every ounce of love, attention and devotion. He seems so grown up now and I feel so out of sync with his life and who he is. I've had to pour so much of myself into my little Chunks as we fight through this cancer together that my son has been growing up without me. How is that fair? And then my husband, my loving and adoring husband who needs me on such an emotional level, the man I've spent the past almost 7 years growing up with. He clings to me as well, and yet sometimes it's just a piece of me and probably not the piece he really needs. It's just made me realize how we are only made up of so much patience, love and goodness, the rest is God in us....shining through. Like a soldier in battle can fight without protection for so long until he falters, but put his armor on and he is indestructible. God has become my armor. I tried to "rebuild" myself with strength and endurance, thinking I could do this on my own, but I have realized how impossible that is. For I have this family, this wonderful and beautiful family that deserve just as much fight from me as I am giving to my little girl. And I can't do it, without Christ by my side filling my reserves each minute, I cannot humanly do it. So I'll humbly take the armor that God has waiting for me and I'll become a warrior in that moment that I need it. You might see me walking down the halls of St. Jude's, Chunks-a-lot on my hip, Talks-a-lot holding my hand and Lips with his arm around my waist, and if you look closer I'm convinced that you'll probably see God's Hand holding all of us. Leading the way, lighting our path and filling those empty spaces in between. For He is my patience, my rest on a sleepless night, my peace on a day full of screaming, my armor for this battle not just through cancer but through life. He is my reserve.

Monday, August 18, 2008

Just the shell


I can look back on this entire situation with Chunks-a-lot and see how I've always had to travel down into the valleys before I can come back up the mountain again. Lately, I've been stuck in a valley. Something seems different to me....all of a sudden. I'm not really sure when it changed or even what it was that changed, but it was something and I sense it so deeply. I look at Chunks-a-lot and something seems so empty inside of her now. The happy, curious, bubbly toddler that I use to know has become tired, irritable and so subdued. We took her to the zoo today so she could delight in all of the animals, like she always does, but there was no joy in her face. She laid her head on my chest almost the entire time and shook her head "no" at almost all the animals we came across. These drugs, these horrible and potent chemotherapy drugs are sucking the life out of my little girl. And yet without them, the tumor would be taking more of her from me and at a quicker pace, as well. It just seems like I can't win for losing....and neither can she. She just keeps on fighting and fighting this ridiculous battle and everytime she gets a little bit ahead, she gets knocked down again. She was screaming in her sleep the other night and I laid there staring at her forever. I started to wonder what it felt like to walk a day in her shoes. To hurt everyday, to be tired, to have no appetite and be sick all the time and I wondered if she's used to it by now or if she even realizes how joyful her childhood should be. We grow up expecting things to be a certain way based on our experiences in life and she's growing up in a hospital where lab work and clinic visits are the highlight of her day. There's pictures painted all over the walls in the inside of the hospital and she goes around and pets all the pictures of the animals. She finds so much joy in doing this and for some reason, that makes me so incredibly sad. It's all she knows and she probably thinks they're real because she is so gentle and loving with them. How can that be her life experience so far? What is it about that situation that breaks my heart and humbles me all at the same time? This little child should be running and playing, giggling at ladybugs and eating Popsicles in the sunshine. Yet here she is, hurting and tired....just a shadow of the chunky bundle of joy that she used to be. There's still a smile and, on a good day, sometimes I'll see it quite often. And I still get attacked with her love and admiration on a daily basis, but something is still missing. Her joy, her happiness, and her childhood....they've all faded away into the background. So for now she'll hurt. For now she'll battle this cancer with everything she has in her as she becomes a shell of the person that she used to be. And hopefully one day, we can fill her life back up with all the wonderful things she has missed. I'll just have to find a way to bottle her childhood until she has a moment to not just experience it, but enjoy it...

Thursday, August 14, 2008

Sometimes it just hurts

My heart is so heavy tonight. I have laid on this sad excuse for a couch for the past 15 minutes trying to fall asleep and as tired as I am, the rest I crave so much seems out of my reach. Chunks-a-lot was admitted to the hospital again yesterday for the beginning of Round Seven of Chemo. Her MRI this past Tuesday showed good results, the tumor was stable and hasn't grown, so you think I would be full of hope and joy.....but I just can't seem to focus on the positive right now. I made the mistake of doing some research on Chunks-a-lot's tumor. I used to do this all the time, sometimes all night long, constantly searching for as much information as I could find and only depressing myself in the process. Ever since arriving at St. Jude's, I've managed to keep myself away from the obsessiveness of web surfing for statistics, until today. Chunks was napping and I was alone, so I started searching and was sorry that I did. Sometimes I get so caught up in the current chemo treatment and the side effects that I forget what it is we're fighting here. A tumor, a brain tumor, a grade three malignant brain tumor. The information I found was the same stuff I've read a million times, but it still felt like a blow to the chest. Children that have this type of tumor have an extremely poor prognosis. Even with complete removal, only 20% of the kids live for five years after diagnosis....the rest of them don't make it. That's in the kids who have their tumors completely or partially removed, those tumors that are deemed "inoperable" are almost always fatal. I guess I had forgotten that. Maybe it's my "selective amnesia". Some people might say that this is just Satan at work in me trying to steal God's thunder from the recent good news we have received. Maybe that's true, but honestly, sometimes it feels good just to let myself hurt. Not in a self-destructive way, it's just that I'm human and I'm this little girl's momma and my pain runs so deep that sometimes I think it might just destroy me. It never does, but sometimes it feels that way. I stepped away from the reality of everything for a long time, today I opened that door again. And it's not just my little Chunks-a-lot, it's Talks-a-lot too. He's in kindergarten now and I am missing it all. I couldn't even be there for his first day of school...that just about killed me. I'm so homesick for him and for my family. Just being able to curl up on the couch with my husband and watch a movie at night, eating breakfast with my son in the mornings, being able to cook in my own kitchen....I miss all the little things I used to so often take for granted. I've been there for all the firsts, every milestone and set back, every smile and every tear and now I'm not. My little boy is growing up and I'm missing it right now and sometimes that just hurts. I'm slowly learning that it's okay to actually admit that this situation just sucks. Sometimes it's not fun, sometimes I get tired, sometimes I start to lose my edge a little bit. I know God is there, always with me, picking up the slack even when I don't realize it. But I think He wants me to feel this hurt sometimes, I think it's important for me to remember why we're fighting this horrible battle with Chunks-a-lot. It probably seems impossible to actually cherish everyday with your child, but I swear to you that I do with her. I hug her and love her as much as she'll let me each and every day. I guess I figure that as long as she's mine, I'm going to make it count. My hurt helps me to remember why I need to keep fighting so hard with her, it helps me to continue to have sympathy for her even when she's screaming in my face, it pushes me to keep on even on those days where I don't feel like I can take one more step. Jesus always has a way of reminding me that she's in the battle of her life and I'm His vessel to help get her through this. So I just throw my hands up in the air and say, "Use me. Whatever she needs, whenever she needs it. Sustain me with your Grace, strengthen me with your endurance, carry me when I'm weak.". I'm not mother of the year or the strongest Christian you'll ever meet, seriously I'm really not anything but ordinary. The only thing that's going on here is I'm riding on the coat tails of a Savior that has blessed me with everything I need to stick it out till the end. In this tragedy I have seen the awesomeness of God. So for tonight, I'll let the tears roll down my cheeks, feeling the pain that's stabbing at my soul. I'll still believe, I'll still fight and sometimes I'll just hurt....and that's okay.

Thursday, August 7, 2008

Changes

Change….the one thing we keep hearing about from all the presidential hopefuls these days and yet it seems that just when one thing changes for the better, something else gives. I’ve spent the past year or so of my “mommy-hood” feeling like that, constantly yearning to better myself and still feeling like a failure. That might make it sound like I’m too hard on myself, but honestly, what mother isn’t? When Chunks-a-lot was born, she came out screaming. As those first days and nights went by, I can remember thinking, “Will she ever stop crying?”. I managed to somehow survive the first couple of weeks without completely losing it, but after awhile it started to wear on me. Almost every hour of the day was spent tending to this fussy, irritable child. I became so engrossed in her behavior that my own mood became contingent on hers. The harder and louder she screamed, the thinner my patience ran and as her irritability reached new heights, I found myself becoming quite short tempered. For some reason, my frustrations were never directed towards Chunks-a-lot. I always had this weird sense of patience and sympathy with her, but not so much with Talks-a-lot. His constant questioning and curiosity about why his baby sister was so fussy only made me feel more frustrated on the inside. I couldn’t appease his questions, I couldn’t seem to ever give him enough attention to satisfy his needs, and so in my great quest to be the best mommy I could to my irritable little girl, something else had to give……and that was my relationship with Talks-a-lot. I don’t think I ever actually realized how much things had changed between us until we got to St. Jude’s, but looking back on it now just makes me cringe. I can even remember trying to read a story to him once and having to almost shout over Chunks-a-lot as she screamed incessantly in my lap. He finally got used to having to read my lips during story time because Chunks-a-lot would cry so loudly that he couldn‘t even hear me talk. That saddens my heart more than you can imagine. Because I sit here and think about how hard this is on me, not ever realizing how hard this has been on my precious little boy. He has endured so much along with me throughout this journey of medical trauma with Chunks-a-lot. He has shown an unusual amount of patience and compassion towards her and myself. Stepping away from him for such a long period of time while we’ve been here in Memphis has changed my relationship with my son…..and not in a bad way. I feel like God is using this horrible tragedy for good in so many ways in my life and the lives of many others. I see now that I wasn’t cultivating the part of my son that needed to grow, the part of him that needed the most attention and love. I look back and see how angry I had become, not even realizing how much this was impacting those around me. If you’ve come to this blog to read about how amazing my journey has been throughout the past year, you won’t find that here. I’m not shy about my short-comings. It was a hard road to travel and being here at St. Jude’s has lightened my load tremendously and opened my eyes to so many things. Talks-a-lot was here this past weekend and he touched my heart tremendously. The moment he walked in the door, I saw Chunks-a-lot’s eyes light up as she ran to him, her little hand waving ferociously. They were so enamored with each other that it seemed the world around them just disappeared. What an awesome love they share. I envy that more than you can imagine. I watched my little girl touching her brother’s face, studying his every movement, completely taken with his presence….and I felt so blessed. These children that I have been given, these angels that God has graced me with….how can I ever satisfy the love that they both deserve on so many different levels. I held my little boy in my arms for what seemed like eternity and just soaked up the joy I felt in his embrace. I was mommy again….not the stressed out, worn down, edge of my seat person that I had become, no, I was just mommy. We walked hand-in-hand constantly throughout his visit and sometimes he would just look at me and whisper, “You’re my special mommy.”. I know my face was just beaming with pride at those words. And although I’m sad for the time that we lost together as we both endured so much this past year, I’m happy for the change our relationship has made. My life wouldn’t be half as wonderful without my little man by my side. For he has taught me so much in life. He looks at his little sister, patchy hair, a little pale, and connected to an IV line, and he only sees her as perfectly normal…..constantly commenting that she has an “adorable little face”. That’s perfect love and it’s touched my soul. So for all the lessons my 14 month old little girl has taught me, I sit back and realize all I’ve learned from my 5 year old little boy as well. Raising them has, in turn, helped me grow emotionally and spiritually. I’m still working on changing some things, but this time I’ll be sure that something more important doesn’t have to give…