Thursday, July 24, 2008

Thanks for the light


So many of my posts are sad and often make me tear up upon re-reading them, but today was a wonderful day. I was so prepared for the worst; vomiting, screaming, violence, etc. and I was delighted to experience quite the opposite. My mother-in-law, further referred to as Skip-boo, has been staying with me this week and we have had quite a number of adventures so far....today was no exception. Chunks-a-lot was very sweet and calm all day, much unlike the attitude she displayed the last time she had this "cocktail" of chemo drugs. She was giggly and friendly with everyone, constantly waving and blowing kisses to every stranger that passed her. The only problem she did have was some issues with constipation. Apparently, chemotherapy drugs are notorious for causing "lazy bowels" so they constantly give kids this stuff called "Miralax"....or as we call it, "Miracle Laxative". Chunks was on her third dose of that with no luck below, so I was starting to become concerned that the deed was never going to be done. We were joking about it with one of the nurses when suddenly Chunks-a-lot's face turned a deep crimson red. I realized that she was putting forth quite an effort and I felt a little bit scared as to what was going to happen next. All of a sudden we all heard this loud, "Boooomp"! I thought, surely that was not what I thought it was! I won't go into details, but let me just tell you that the Miralax lives up to its name! Chunks-a-lot kept pinching her tiny button nose shut with her fingers and saying, "Phheeeww! I pooooped!". It was absolutely precious and quite hysterical. After washing and re-washing our hands, we started on our nightly rounds through the hospital. We decided to make a stop in the nutrition room to heat up some spaghetti for the little chunk (her very favorite). After heating up the delicious canned spaghetti, I was commenting on how amazed I was that Chunks-a-lot hadn't thrown up from the Chemo. "Maybe she just isn't going to get sick this time around!", I exclaimed happily. No sooner did those words leave my mouth when she suddenly vomited four times all over the floor beside the nurses' station. I was worried that this was going to be a downward spiral of events but it didn't even seem to bother my little chunk. She just cracked a little smile and acted like nothing had even happened. They gave her some different anti-nausea medication to help control her upset tummy and within thirty minutes, she was doped up. It was absolutely precious because she could hardly even hold her head up, but she was still babbling away to anyone that would listen. Skip-boo commented that it was her first "drug experience"....and we have the pictures to prove it. We could tell she was getting extremely sleepy so I decided to put her down for the night. I stood there and rubbed her head for a couple of minutes and then tried to slowly tip-toe away, when suddenly I heard a tiny voice call out, "Momma!". I turned around to see this precious little angel lying there, eyes closed, hands held up in the air motioning for me to hug her. So I climbed into the caged crib with her and laid there until she fell into a deep sleep. I started wondering how I was ever going to get out of the bed without waking her up and tried to plan out, in my head, an escape route. I made the awesome choice of using the bedside furniture to hoist my body out of the bed and, much to my surprise, the furniture had wheels on it! The table rolled away and I landed smack on the floor. The bed is metal, so it was sure to squeak very loudly as I tumbled out. Luckily, no one was there to witness my mishap, but Skip-boo and I had a good laugh about it later on when I shared my story. It's funny because I had myself completely prepared for a bad day and God just blessed me with an amazing one instead. I laughed more today than I have in a long time and it felt so good. It's like God knows just how much I can take and then He offers me relief. So I'll spend the rest of my night hanging on to the laughter and the joy that I saw in my little girl's eyes today. It may be easy to praise God in the light, but it's days like this that give me the strength and the courage to praise Him in the darkness. Thank you Jesus for blessing me with light!

Saturday, July 19, 2008

The one thing I can't fix

We were alone again last night, just me and Chunks-a-lot. It was a weird feeling and didn't bring quite the rush of loneliness that I thought it would. Everything was so quiet as we walked our same beaten path along the halls of the hospital. She stopped to kiss the painted pictures of animals on the walls, danced to some music that was playing nearby and played with Mr. Potato Head and all his wonderful parts. Occasionally, she would glance up, making sure I was there and would softly mumble, "Momma". She didn't want me to pick her up, she would just flash me a smile and go back to playing. I stared at her, almost in a daze, for what seemed like an hour. I examined the shunt that runs down the back of her head, the patches of hair that have refused to fall out, her little pants that just barely stay up above her hips.....and I felt helpless. I can feed her, bathe her, care for her needs, play with her and love her, but I can't do the one thing that she desperately needs...."fix" her. You go throughout your motherhood years sometimes feeling like a champion. You can bandage a scraped knee, kiss away hurt feelings and chase out scary under-the-bed monsters; you're a super-mom. That's how I felt with Talks-a-lot, I could be everything that he needed me to be and then some. Yet here I am with this sick little girl and I'm helpless. I feel like everyday is just another piece of sand that has dropped. It's almost like we got here and were handed an hourglass with only a certain amount of time left..... and everyday is just one day less that we have with her. But then I think, no, how about this: everyday is just one more day that I get to spend with her. These people, these doctors and specialists might give us an estimate as to how much life she has left to live before this cancer overtakes her, but who are they? They do their research and their tests and they just keep searching, yet the cure still evades them. Then there's this God, this Savior, this Holy Spirit who holds the cure to all of life's ailments; physical, emotional, and spiritual. Isn't it He who gives us time on this earth and then decides when our time is done? Isn't it He who knows our life from beginning to end before we even live it? Should I put so much of my faith in a doctor's timeline or in God's merciful timing. Because I look at this little girl, this unbelievably precious little angel and I see how man has tried time and time again to "fix" her. The shunt that drains the fluid off her brain, the scars from surgeries done to correct life-threatening problems caused by her tumor, the IV line carrying Chemo into her body, destroying her while saving her at the same time. This is the way of man. Then I look to Christ and I see Him, raising her body up in resilience each time she's down, carrying her through the days of sickness and tears, filling her full of His spirit so when she should be down she's still going strong and ultimately giving her the strength and endurance to fight the battle of her life. He holds the cure in His hands, but it's all in His timing. He allowed her to fall off our bed and discover all of this, and in that, His timing saved her life. And regardless of whether or not I understand His plan, I can believe in it because God has already shown Himself in this trauma. I can pray that God will work through man to save this little girl, but ultimately it will be Jesus Christ who will give her relief from this cancer. Whether that relief be through the healing of her physical body or through the healing that comes through entering the gates of heaven, I'll let Him decide. But I won't stop fighting for her and I won't stop begging for her life. I'll still wipe her tears, I'll still bandage her scrapes and I'll still cradle her in my love, but I'll let Him "fix" her.

Monday, July 14, 2008

My prayer

There have been so many times during the past six months that I have gotten worn down, so many times where I’ve reached a point where I just didn’t think I could take it anymore, this past weekend was one of those times. Chunks-a-lot is really starting to wear down from the Chemotherapy….and we’ve only just completed the first cycle. We’re supposed to have about five more months of this before her treatments slack off a little bit, there’s a part of me that wonders if she’ll be able to take five more months of this. She has been lethargic, moody, irritable, and has cried endlessly for days. There have been moments, sometimes even lasting an hour or so, where she seems her normal, bubbly self but for the most part she’s been really out of sorts. I can feel myself breaking down a little bit. It had already started to happen when she got an infection last week and was admitted to the hospital, but spending the past few days tending to a screaming, miserable child has almost put me over the edge. I took her outside yesterday evening after Lips went back home for another week of work and for the first time in awhile, it was just mommy and Chunks. We walked around together and examined the trees, poked at some ants and crunched some dead leaves in our hands. She toddled along holding my finger and pointing at all the squirrels and birds and calling them “kitty-kitty’s”. I got a little choked up watching her, she was unusually calm and happy, much unlike the Chunks-a-lot we’ve seen over the past few days. Her hair has started coming out, so her little head is getting a little patchy and her eyes are rimmed with red and cupped by faint black circles beneath. She’s lost a little bit of weight and looking at pictures of her a month ago compared with now, you can tell she’s slimmed up a bit. As I was standing there staring at her it was like I suddenly realized how sick she really is. I wanted to cry and the tears were there, but I didn’t let myself. I guess I was scared that if I started crying, I wouldn’t be able to stop. She sat down on the sidewalk, so I joined her and she seemed to be so caught up in her own world….running her finger along the pavement, watching the birds look for insects, twiddling a piece of grass between her fingers. Suddenly, she turned her face towards me and her crystal blue eyes sparkled as they met mine. She smiled, her tiny baby teeth showing through, and softly said, “Momma….”. Then she scooted closer and hugged me, patting her little hand on my back. A tear rolled down my face so slowly it almost seemed dramatic. I rubbed the back of her hair with my hand and watched as her little baby hairs floated away in the breeze. I held her for what seemed like forever, just savoring that precious moment of love between us. She pulled away and smiled at me again before falling back into the amazement of the world around her. And in that moment, for the first time, I thought about what it would truly be like to have to lose her. To not see that precious face every morning, smiling at me so innocently. To not hear her tiny voice calling out “Momma”. To miss her smell, her soft skin, her beautiful eyes and all the precious little things in between that make her my angel. The feeling of sadness I felt was unlike anything I have ever experienced. I physically and emotionally hurt in such a way that I couldn’t even move. I closed my eyes for a moment and begged God for about the millionth time to please let me keep her. I know the spill, He loves her more than I ever could, He always has our best interests at heart, her life belongs to Him; and I believe all those things to the depths of my being. But is it so wrong for me to just want to keep her? So I’ll just go on walking this impossible journey, tears in my eyes, burdens on my back, casting them all at the cross; then waking up the very next day and doing it all over again. And I’ll still end my days pleading with Jesus Christ for my little girl’s life. So it goes, “Dear Jesus, I don’t proclaim to know your purpose in all this. I don’t pretend to understand your plan and I admit that I don’t always walk each step in humbleness to You. I may not be a perfect mommy, but I love my children. This little angel is my world, she delights my life and I love her so intensely, sometimes it hurts. Please Jesus, bind this tumor, do a miracle in the healing of this little girl’s life and please let me keep her. Jesus, please let me keep her. Jesus, please let me keep her.”

Friday, July 11, 2008

Searching for joy


Yesterday was a good day...well at least it was a lot better than the day before, but I still had this intense feeling of sadness that I kept stuffing in the corners of my mind. I always picture it like a wall. I'm standing on one side of this brick wall that's only a little bit taller than me and those horrible emotions filled with pain, anger and sadness have been quickly thrown to the other side of the wall...safely out of my view. But they're never really gone, it's like I always know they're there, I just refuse to acknowledge them. Chocolat is going back to B'ham today for the weekend as Lips (hubby) is coming up for the weekend. She suggested that I go back to the Target House and sleep last night instead of us both spending the night up at the hospital again. I was reluctant at first, but the thought of a full night of uninterrupted sleep was too appealing. As I was driving to the house, it was just beginning to get dark outside and the muggy air had finally begun to lift. Suddenly it was quite, almost too quiet,and a piece of that brick wall crumbled and I became overwhelmed with sadness for my little Chunks-a-lot. She had such a hard day yesterday, her eyes looked terrible, she seemed physically weak, and her disposition had it's moments of joy but for the most part, she was in a raw mood. It's one of the first times throughout this long road of sickness that's she's actually looked "sick". It just about rips my heart out of my chest to have to see her like that. It seems like we keep reaching and reaching for some relief, for some good news, for some sort of hope to save this precious little girl. And honestly, sometimes it just seems like we've come to the edge of a cliff and there is no more road to travel. There's just this feeling in my spirit, this aching in my soul and I've never felt this before. I don't know what it is but it hurts. Nothing even seems normal anymore; walking into the grocery store the other day to pick up some stuff, I felt so out of place. It was this weird feeling of, "my daughter's in the hospital, sick, miserable and in pain and I'm buying groceries.", I guess it just seems like life shouldn't carry on as normal. And somehow it does....but it never seems right. I can handle this when she's happy and full of life, but as she's started slowly wearing down from the cancer and the chemo I've seen that brick wall that's barricading my unwanted emotions slowly coming down, piece by piece by piece. And as I stare into the reality of my own pain and watch my daughter face a battle that seems larger than life, I continue to hear that still, soft voice. "I will carry you, I will give you strength, My Grace is sufficient." Sometimes there are days where I refuse to listen to that message as it requires me to actually admit to myself how much this hurts. Then there are days where the only thing that's keeping me going is knowing that I'm not the only thing that's keeping me going. So today I will face this sadness with as much courage as I can find within myself. She's worth it, she's worth every bit of fight I have left within me. I might walk with a little less joy in my steps these days as I watch my little girl struggle through such difficulty and pain. I might smile a little less and laughter might become a stranger to me, because as much as the cancer is wearing on her, watching her suffer is wearing on me. That's not to say that I'll give up, because I never will, it just means that I can actually admit now that this hurts and it hurts really bad. I won't bother to count the hard days anymore, as they have become too frequent to keep track of, but I'll never stop counting her good days. Please Jesus, give her freedom from this pain, give her relief from this suffering, bind this tumor in Your name....and we will give You the glory forever.

Wednesday, July 9, 2008

The strength of the fight

Today was like the longest day I have ever experienced in my life. Chunks-a-lot spiked a fever the other day and her blood counts were zero, meaning she has zero ability to fight off infection, so they admitted her to the hospital. So we walked in the same meaningless path on the second floor of the hospital over and over again, almost like we were constantly trying to get somewhere and just could never get there. It's almost a maddening feeling, like you're trapped in a cage. And I love St. Jude's....I really, really do. It's just being couped up in one place for too long gets to you after awhile. So we went from one playroom to the other (there's only two) and tinkered with the different toys until she tired of that, then we'd walk some more.....then we'd play some more and around and around we went all day long. Chocolat (my mom) kept asking me, "what time is it?", and it would have only been five minutes later than the last time she had asked. We had a good laugh about that several times over the course of the day. We would become unusually excited when mealtime came around simply because it was just something different to do. Yeah, that's pretty pitiful. Finally, the day is over and why I'm not fast asleep on my flat-as-a-pancake hospital pillow, I'm not sure. I think it's just that here lately, I can't seem to escape my looming emotions. I look at Chunks-a-lot and sadness just seems to overwhelm me. I just keep telling that cancer to "leave her alone!". Not that it listens. I try to pray, but sometimes I feel redundant in my pleading with God. I'm sure He never tires of hearing my prayers but there's times where I feel like I pray and pray and pray......yet she's still sick. The tumor is still there, the cancer is still growing, her body is still suffering.... and for what. Why does this have to happen to her? I know I have said before that I've moved on past asking "why?", but sometimes my inquiries just get the better of me. Today they got the better of me. It's just so hard, sometimes it feels like it's too hard. I was running on the treadmill at the Target House the other morning while Chocolat was watching her upstairs and I found myself running faster and faster and faster. So fast that I thought my heart was going to explode within my chest. There was this tiny voice inside of me saying, "What the heck?! Slow down, you're going to give out!", but that made me angry. No, how can I give up, it might burn, it might ache, but does she give up? Does she give out? Does she let the pain get the better of her? No. She fights, she battles, she's feisty through it all. So I pushed and pushed until I literally could not make my legs move another inch and then I stopped. And there was this weird sensation inside of me that realized how parents let their children go when God calls them home. You watch them fight with everything they have, you see them push their pain thresholds to the limits and then some. You spend everyday wiping tears and comforting cries and every night kneeling at your bedside, pleading and begging with God for their life. They fight and fight until their poor little bodies just can't take it anymore and then they relent. And there must be some sort of breath that is breathed as you watch them find relief in the arms of their Savior. That's probably completely depressing and I really don't mean to be like that, it's just where I'm at right now. And I'll probably wake up in the morning and feel the exact opposite, with hope in my heart and strength in my spirit. That's what always seems to happen. But for now I think I'll sleep with the sadness that lingers so deeply in my soul. Another night spent in earnest prayer for the life of my little angel. As long as she has it in her to fight, then so will I.

Friday, July 4, 2008

Somewhere in the beginning

The past couple of days have been hard….probably some of the hardest so far. Chunks-a-lot has had a really rough time with this round of Chemotherapy drugs. They gave her a cocktail of three different Chemo’s this past weekend and it really rendered havoc on her little body. She threw up almost the entire day on Sunday in spite of all the anti-nausea medicine they were pumping her full of. She’s never really been sick before so having to watch her struggle through the day was heart-wrenching for me. The sympathy and compassion that I feel for her in my heart is almost unbearable. I would do anything to relieve her from this suffering…..it’s just almost too hard to watch. One of the drugs, called Cisplatin, made it hard for her to walk for a couple of days and that seemed to frustrate her even further. It’s weird because sometimes I forget that she even has a brain tumor, I guess I’m so caught up in her current Chemo treatments and all the side effects they bring that I actually forget (momentarily) why we’re in all this mess to begin with. I feel so helpless in this situation. It seems so horrible for her to have to spend so much time in the hospital, constantly being poked at and messed with. All I want is for her to enjoy her little life, to run and play like other children, to experience the world around her…..I guess it makes me incredibly sad that she can’t do all those things right now. What’s even sadder is that she doesn’t even care. I know that sounds weird, but it’s like she just adapts to whatever we’re doing, wherever we are. Like when we’re stuck on the second floor of the hospital during her treatments, instead of becoming fussy and irritable that she can’t go outside and play like she wants to, she just makes light of it. She’ll make her “rounds” from nurses’ station to nurses’ station, waving at everyone and putting on a show for them…..it’s so sweet. Even when she’s being dragged from appointment to appointment during the week, she still keeps a smile on her face and always makes sure to entertain everyone around her. I have learned so much from her in this situation. I think all too often when life doesn’t go our way, we whine and complain and kick our feet, then here’s this little girl whose life couldn’t be harder and she never lets it get her down. How incredible is that? And that’s why these past few days have been so hard, it’s the first time throughout this process that I’ve really seen her spirit fade. You can see it in her eyes that she’s miserable. She’s really fatigued, has lost her appetite, and gets sick to her stomach sometimes. It’s so sad because as sick as she might feel, every time we pass someone in the hallway, she’ll have her little hand just a waving at them, constantly blowing kisses at everyone. Her patience astounds me, her spirit humbles me, her will to fight amazes me. She has been through so much and yet she just keeps on going and with a smile on her face, at that. I used to wonder why God allowed this in her life, how He could allow this precious little girl to have to journey through so much pain. But I don’t look at it that way anymore. For now I feel unbelievably blessed to be able to stand by this angel as she battles for her life. I learn something from her everyday, life lessons that I will carry with me forever. Christ has used her to change my life in a way I could have never imagined. There’s been some days here lately where my heart felt like it was going to explode, all of this just seems so ridiculously unfair for her. But then I know God is there beside us each and every step of the way, constantly looking out for us at every turn. As this gets harder and harder, I just can’t help but wonder if I will go home from here with her in my arms or with her in my heart. And it’s those times of almost extreme depression that I remember to just cherish the moments I have with her right now, without worrying about what might lie ahead in the future. After all, a story wouldn’t be a story without the beginning, the middle and all the little parts in between…the ending is just the culmination of all the things we’ve already experienced and the closure it brings. So I think I’ll just hang around here somewhere in the beginning of her story…..not worrying about what the next page might read. After all, at least for right now, I’m still holding her in my heart and in my arms.