Thursday, May 29, 2008

Deep thoughts

I laid there for awhile tonight and tried to sleep but I just cannot. I have all these thoughts racing through my mind and they seem to have erased any feeling of exhaustion that I might have felt earlier this evening. So far during this medical journey of trauma with Chunks-a-lot, I have managed to keep my head up, only truly losing it a handful of times and then there's tonight. I suddenly feel angry, as though all this pent-up emotion has been let lose to prey upon my being. I've entertained the questions of why......why her, why MY daughter, why something so terrible as a brain tumor. And why does it have to be inoperable? Couldn't just the tumor itself have accomplished the same revival of spirituality without it having to be in a place that is inaccessible surgically? These are impossible questions, some of them even challenging to the God that has allowed this and I know better. I just find myself searching, whether it be for a cure, a "fix", a band-aid or just a peace that seems to escape me often on nights such as these. Don't get me wrong, God has provided an unreal amount of grace, mercy and patience for me and in me during this entire situation and I live off of this daily. It's not that He is not sufficient, He is. It's just that somehow I have realized how very human I am. Recently, I was questioned about whether or not God actually "created" Chunks-a-lot this way or if He merely just "allowed" it to happen; the basis of this argument being that God is incapable of creating something that is bad. But here is my question, whose eyes are we viewing this situation through, God's or our own? What makes the tumor bad? Is it the physical pain it causes my daughter sometimes on a daily basis? Is it the emotional pain it causes my entire family to watch her suffer through this? Is pain the enemy? Is it the fear that we experience as a result of our lack of faith in a holy God? Because humanly, I want to keep her. I want to watch her grow up and be there for her first date, first prom, her graduation....I want to live that with her. But God's plan is bigger. This tumor might not shrink or disappear and she might be carried home to heaven far sooner than we desire, and if so, her passing might hurt terribly but did it accomplish a greater cause? I think God creates us, designs us intricately in the womb of our mothers and when He does this, there is no attention to detail that is spared. So as He was creating her, I guess I'm not positively sure whether He allowed the tumor or actually designed it as a part of her being, but either way He has a purpose for her life and that was a part of His purpose. The tumor might bring pain but it will bring lost souls to Christ, it will revive lukewarm, stagnant Christians, it will touch hundreds if not thousands of people. In that light, is the tumor bad? And should Jesus choose to take her home to heaven then I will know with great peace in my heart that she is enjoying a much more glorious existence with her Maker than she could have ever experienced here on earth. So even though the tumor might cause death, is death really bad? Or is it sometimes a relief from the pain and burdens of this physical earth? The tumor is not the enemy, Satan is the enemy. And if we let him get a foothold in this situation, then her suffering is in vain and THAT makes me angry. But if we seek out the bigger picture, the greater purpose, God's TRUE plan in all of this and we make it count for the glory of God, then we have honored her suffering. For what, if anything, are we here for than to, one, bring lost souls to Christ and two, glorify God. I can count on two fingers how many of these things my little angel has already accomplished in her short life and that puts me to shame. I can already see God's Hand in this as He has changed me and many around me, lighting a fire in me for Christ and His kingdom....and this is just the beginning. My prayer life has been revived, my marriage has been renewed, my relationship with my son has deepened, and the lives of almost everyone in my family have been changed for the better. Through our pain and sadness we have found a renewed faith and dependence in God. I could go on with this for hours and it really fires me up, but don't let me fool you for I am still human and hurting. And I still hug my daughter every half-hour, soaking up every ounce of love from her that I possibly can. But it won't end with my pain or my tears, it will end with all of us becoming champions for Christ. And created or allowed, however you want to look at it, God is USING this and shining through this child to further His kingdom.....and I'm sorry, but there's just nothing bad about that...mm, Amen

Tuesday, May 27, 2008

Brotherly love

Throughout this ordeal with Chunks-a-lot, I have been amazed by how mature Talks-a-lot has handled this entire situation. The first time she had surgery, he took it in stride and seemed to not be bothered in the least by her rough appearance. Since then, he has taken on a passion for the facts as he continuously shares with friends, family and complete strangers that his sister has a shunt AND a brain tumor (he always emphasizes the "and"). This time when Chunks-a-lot was admitted to the hospital, Talks-a-lot seemed to have a harder time dealing with the situation. We had plans to go to North Carolina for my husband's family reunion over the Memorial Day weekend and we were actually supposed to leave the day after Chunks-a-lot's MRI. Obviously, the surprising bad news from her scan and impending surgery the following day kept my husband and I from making the trip, but we started thinking that it might be a good idea to go ahead and still let Talks-a-lot go with his grandparents. Sometimes with kids, distractions are key in an emotional situation and that was the basis of our thinking in this ordeal. Well, Talks-a-lot was initially delighted to learn that he could still go and see his great-grandparents as this was a trip he had been looking forward to for weeks. But as the day wore on, I could tell he was starting to backtrack on his decision to leave. It was beyond obvious that there was something considerably wrong with Chunks-a-lot as they had attached these circular things to her head to use as a mapping system during surgery. And on a side note, I am relieved to know that they do actually use some high-tech tools when poking around in someone's brain. Anyhow, when Talks-a-lot saw his little sister covered in these white circles, he became visibly disturbed. Suddenly he became clingy with her, not wanting to leave her side or mine, constantly desperate for our attention. "I'll miss you so much when you're in North Carolina!" I said, knowing that he would soon be leaving the hospital in preparation for an early morning start the next day. "I don't think I want to go to the family reunion anymore, I just want to stay here.", Talks-a-lot stated as he burst into tears. "Why are you crying? What's got you so upset?", I began, "What has made you want to change your mind and not go to North Carolina?". His response came so quietly and was filled with heart-wrenching emotion, "I just love my little sister and I don't want to leave her.". At that very moment I felt like my very soul was going to explode. This little boy of only five years old was processing this situation at a level far beyond his years. His attachment to his sister has always been undeniable, but this just blew me away. Even though he actually ended up changing his mind again and going on the trip, that moment with him humbled me. I see moms and their kids all the time, going about their normal lives, getting caught up in the where and when of playdates and bible camps and whatnot. And there's times when I long for that normalcy, those days when my biggest worry was if the zoo would be overcrowded or if a party would get rained out. But then I look at all these moments that I have had the opportunity to share with my children and I think, no way. For wrapped up in all of this trauma have been shining glimpses of how wonderful both of my children are. Chunks-a-lot for her courage and resilience, Talks-a-lot for his compassion and loving heart. To watch a baby, not yet even a year old, tolerate IV needles, endless tests (some that have scary practices like being wrapped into a papoose for a CT scan) and bouncing back beautifully from extremely dangerous surgeries allows me to see that this fiery little girl has the heart of a true fighter. And to watch my son put his own wants aside to tend to his needy sister, to be patient with her emotional outbursts when she's having a bad day and to feel his arms wrap around me when he somehow just knows that mommy is sad, through this I have been given the pleasure of discovering how selfless he is and to see his servant heart. Would I have missed all this if I was so caught up in the normalcy of everyday life? Probably so. Therefore, I feel eternally blessed and grateful to be able to see my kids in all of their potential. So I'll put this down as lesson #132 learned and as an endless blessing that I will carry with me forever.

Saturday, May 24, 2008

Big changes

So this past Wednesday (the 21st) was Chunks-a-lot's MRI scan and it was also another day in my life that I am sure I will never forget. Sitting in the room at the Neuro-oncologist's office right after her scan was completed, I found myself full of hope for a good report. Yet as the doctor walked in, I could immediately tell something wasn't right. She didn't address the results of the scan right away, but instead started playing with Chunks-a-lot and asking us a lot of questions. I could feel the sweat in my palms accumulating as time suddenly slowed to an agonizing pace. And then, she said it.....almost in slow motion, her tumor had grown. I always thought I would emotionally lose it at this news, but instead I found myself thirsty for the facts. I think when I accept the bad news in a practical way, it helps divert my attention from the hysteria of the situation. Not only had the tumor grown, it was blocking off her right ventricle and was thus causing a huge backup of spinal fluid. The right ventricle had actually crossed the mid-line of her brain and was pushing into her left ventricle. They kept asking us, "Wasn't she displaying symptoms of pain or irritability?". Hmm....ya think?? As though I hadn't alerted them to the seizures she had had a couple of weeks back, or the extreme change in mood and problems with balance she had been exhibiting. And what was their answer to this at the time---to put her on chronic pain medicine. Sometimes doctors, as well-meaning as they might be, just frustrate the heck outta me. But the past is the past, so I'll move on. They admitted Chunks-a-lot to the hospital immediately and she had surgery the following morning to correct the problem with her ventricles. The surgery lasted 3 1/2 hours, which proved to be the most excruciating hours of my life. Knowing the long list of possible complications and risks, I was terrified that she might not even make it through the surgery, but she did....thankfully she pulled through beautifully. They were even able to finally biopsy the tumor, so in about 6 days we will be able to put a name to this monster. Another waiting game, but we're getting used to it. She was discharged directly from ICU the day after her surgery because she was recovering so well. There's so many stories that I could write about from our experiences with her in ICU, but then this post would probably take on the form of a novel, so I'll save those for a rainy day. The important thing is that she's home with us now and doing well considering that she just had major brain surgery. She is up and walking and seems to have developed a slight limp on her left side, but this could go away with time. Regardless, it seems a minor complication considering the more serious things that could have arisen from her surgery and biopsy. So now we are left with the reality that our little baby girl will have to start chemotherapy soon. We are about 98% sure that we will be heading to St. Jude's Children's Research Hospital in Memphis, TN for her treatments, as they have some of the top doctors in the world on their Pediatric Brain Tumor Team. Although this is certainly in her best interest, it will take quite a toll on us as a family. Lips (hubby and daddy) will not be able to stay with us at St. Jude's. He'll have to stay on this side of things to keep his job and make sure the bills get paid.....after all, at some point we want to have a house to come back to! Fortunately, Chocolat (momma and nannie) will be making the venture with me and the kids to Memphis, which I am sure will prove to be an enormous blessing. Even so, this is such a huge step in our lives. Nothing will ever be the same for any of us. It's like Chocolat said, how does life ever go back to normal? How hard is it going to be to have to watch my daughter go through Chemo and all the awful side effects that come along with it? How do I explain to my son why his sister is so tired or why we can only see daddy on the weekends? Where do I even begin? I have tried endlessly to make sense of all of this....to somehow rationalize this in my mind. It's just not possible. So I am left with the reality that God must see something in us that we don't think we are capable of. I keep pulling from my reserves, wondering when they're going to run out and amazingly Christ keeps allotting us grace in the measure that we need it. God keeps using people in our lives to pick us up and dust us off just when we don't think we can walk another step. And so for these reasons, I have been humbled in my relationship with Jesus. I don't profess to know God's plan in all of this, nor do I have any idea how all of this will turn out, but I can tell you one thing's for sure, God IS in control. And yes, He might take her from us far sooner than seems fair, but at least we have the promise of knowing that she is dancing with the angels instead of suffering on this earth. Whatever her future holds, the ways that God has used her to not only touch people from miles away, but to touch and change my entire family is simply amazing. For I have been given the most beautiful treasure in the world, the opportunity to watch Christ use my daughter to further His kingdom. How many people can say that. I could live till I'm 100 years old and say that I might have brought a handful of people to a relationship with Jesus, but already in her 11 month existence, I can guarantee you she has touched more than just a few lost souls. For this, I am eternally blessed. She is chunky and giggly and the most beautiful little girl I have ever laid eyes on and I will love her for as long as God allows. And hopefully I will always be able to honor her battle and suffering by being the role model for Christ that I need to be. Hm....I seem to have run out of things to say, which is amazing because I never thought that would happen. I guess when you're done....you're done

Tuesday, May 20, 2008

Chunks-a-lot

So tomorrow is the "big day"....well, one of many anyhow. Chunks-a-lot has another MRI scan tomorrow morning to check for tumor growth. To say that we are anxious and scared would be a gross understatement; we are terrified. I can somehow get through most days without thinking about her brain tumor or the uncertainty of her future until we start rounding the corner of another MRI. It's then that I realize how horrible and scary all of this really is. I always try to imagine in my mind what the results of her scan are going to be and how I will react to the news. It drives me nuts and, for that reason, I don't expect to get much sleep tonight. She's had a series of bad days here lately and it's made things extremely hard for everyone involved. I find myself zoning out to some type of alternate reality where none of this exists.....I think that's just me trying to survive emotionally. I almost get manic, like I'll go from this high of feeling as though this tumor will disappear to feeling like it might negatively affect her well-being and her future. The whole situation seems surreal. I mean, I carried this tiny peanut in my tummy for nine months, gave birth to her on a beautiful summer day and now I'm faced with the reality that I might not get to "keep" her for as long as I would desire. How do you rationalize that? How do you not beg God every second of everyday for her life? I often take a step back and think, "Really? This is for real? My precious little angel of a daughter has a brain tumor?". I was watching her today as she was collecting all of her favorite stuffed animals and "rocking" them to sleep and I caught myself getting choked up. She is such a little girl, always caring for her little dolls and finding so much joy in all things girl-related. Sometimes, for some reason, this just makes "getting through" this a lot harder. Oh and goodness---she has these precious, chunky legs that almost seem too stubby to aide her in walking, but she manages to get around quite well. Sometimes she'll wander into another room, momentarily escaping from my view and then I'll see her little face peer around the corner and she'll start giggling and toddle back to me. I love those little moments.....those small things that are made precious simply because she's my little Chunks-a-lot. I'm sure this post is quite choppy and might not "flow" too well....but I'm just sitting here in a state of numbness and finding myself quite melancholy. I guess that's to be expected. I just can't help but think about her and smile.....and sometimes even cry. To be given such an amazing gift and know that it could be so quickly taken away is a reality that I cannot begin to prepare myself for. It makes me want to rescue her, somehow save her from this potential tragedy....and yet I cannot. So many people keep offering us different possibilities as to why she has this tumor; could it be genetics, a medicine I took while pregnant, and so on. But I just keep thinking---no way! As hard as it is to understand, this little girl was CREATED this way, brain tumor and all by the very hand of God. This isn't some sort of gross mistake or flaw, nothing goes unnoticed by Christ. I live with that reality, He gave her to me this way for a reason. So I'll just go on loving her and soaking up all the precious memories that I can for as long as I can. Who knows how many lives she will touch and how many people her life will impact. We might never know the reason God allowed this in her life, but I firmly believe that my daughter is somehow furthering the Kingdom of Jesus Christ. And for that, I am blessed. It might be hard, scary, sad and unbelievably heart-wrenching, but I know her life is and always will be in the Hands of the one who created her.

Thursday, May 8, 2008

The big F-I-V-E!

So today is the day, the day my little boy turns five years old! Talks-a-lot has been extremely excited about his birthday for the better part of 52 weeks, as he's been counting down the days till its arrival. He woke up with a skip in his step this morning as he wandered in my bedroom to wake me up. It was written all over his face, the excitement, the joy, the overwhelming giddiness and as I scooped him up and whispered "Happy Birthday" in his ear, his smile spread happily across his beaming face. I watched him this morning as he opened up his gift from mommy and daddy, remembering the day he was first born. I can actually still remember the sheer terror I felt when he was about to be born into this world.....in fact, I think my exact thought was, "What have I done?". Yet no one has been more surprised than me to find how wonderful being a mommy to this little person really is. He is an amazing child, truly a gift from God to two first time parents who didn't have a clue what lie ahead. If you don't know our little man like we do, here's just a few things that make him the wonderful person that he is:
*He's extremely compassionate---he has such a heart for others
*He loves Jesus and desires to please Him
*He's one of the most honest people I've ever met
*He LOVES to talk (hence the nickname Talks-a-lot)
*He enjoys being around people and meeting new people
*He's scared of spiders and bees but loves ladybugs and rolly-polly's
*He loves to watch football with Daddy
*He's extremely smart
*He is very affectionate and loving
*He adores his little sister and has more patience with her than I do sometimes!
*He is always happy and smiling
*He is eager to please and extremely obedient
These are just a few things out of the million that I could share and if you know Talks-a-lot, then you know how truly amazing he really is. So we've made it this far, all the way to five years old. There's been a lot of laughter and silliness along the way and I feel like, being a young mom, we've grown up together. I cannot imagine my life without him and find the most joy in the world out of being his mommy. Now I'll strap on my life seatbelt for the next five years!