Tuesday, October 14, 2008

A stranger in my own home

So I'm finally here at home, my second visit back since we've been at St. Jude's and I feel oddly out of place. There are so many memories here, resting in the corners, hidden in the walls and they seem to almost haunt me now. I feel this intense urge to bask in the comfort of the life I've had to leave behind and yet I can't seem to find any peace in it. My life has been completely turned upside down and all of the things that used to be so important to me seem so foreign now. I had such a routine of chores, errands and play dates that I used to strictly adhere to and I can't seem to find the motivation to do these things anymore. For I look at my children, together once again, and all I want to do is lie on the floor and play with them. I don't want to waste a moment on anything unimportant (or seemingly so), I just want to catch up on all of this time that I have lost with my little ones. Yet I keep feeling this tug, this constant push to fall back into the mold of who I used to be, but I don't see happiness in that person anymore. As traumatic as my life has been the past four or five months, I feel like I've truly found myself amidst this pain and sadness. And the weird part is, I'm not who I thought I was. My life had taken on such a routine of being this certain type of mother and wife, but deep down inside that's not really who I was....it's just who I was pretending to be. I feel like I got so caught up in life and all the joy I was supposed to be finding that it secretly passed me by, lost in my efforts to be who I thought I needed to be. Now I sit in this house, surrounded by the all of the things I used to let define me and I feel so lost. My mission at St. Jude's doesn't exist as strongly here, here I'm just a mommy with a sick little girl. The hope that engulfs me daily at St. Jude's seems to elude me here as I am once again reminded of how tragic all of this really is. I never thought life would be harder at home than it would be away from home, but in some ways it is. Our fight belongs in the hospital, where battles are won and lost everyday, not here at home. I guess I just wish coming home meant that we could leave this battle through cancer behind us...even if just for a moment. The day I walk through these doors praising God for the miracle He has given to my little girl is the day I will truly feel like I've come back home. We're not there yet....but we're fighting to get there. Our journey at St. Jude's isn't over and that's a story that needs to be written before life can truly begin again. Until then I'll leave those memories hiding in the corners, resting quietly until they can be remembered with joy once again. Believing that one day our home will be surrounded by peace, filled with love and rejoicing in a Miracle.

Wednesday, October 8, 2008

Cry out to Jesus

I should be asleep right now but I've tossed and turned for the past hour or so and just can't seem to find rest. I am so scared right now. I haven't put too much thought or energy into worrying about Chunks-a-lot's upcoming MRI scan but now I find myself completely consumed with fear. There's another little girl here at St. Jude's with the exact same tumor, also inoperable, also searching for a miracle who got some heart-wrenching news today. The results of her latest MRI scan showed that the tumor has grown substantially and they have now changed her previous diagnosis from life-threatening to terminal. I have been in shock about this for most of the day and it's shaken me to my core. I know this little girl's mother, I've seen them around the hospital, talked to them at the Target House, prayed for them constantly and now this....it's just flooded me with emotions. Any hope of not getting too worried about Chunk's scan is now out the window as I find myself completely engulfed by terror. I laid in bed tonight staring at the light shining through the tightly closed blinds and it felt like I was hearing about Chunk's tumor for the very first time. There are so many times where I honestly just forget what she's fighting. The side effects of chemotherapy rule our lives. There's always a hundred things to worry about when she's battling through her treatments. It's a constant struggle to keep her eating, it's exhausting to continue to find foods that please her and don't offend her nauseous tummy. We spend most of the day fixing foods for her, in hopes that she might eat even just a few bites. Then the medicines...another battle. She has a medicine she has to take on Mondays, Tuesdays and Wednesdays twice a day to protect her body while she's going through Chemo, she has an anti-seizure medicine she takes three times a day every day, she has two different anti-nausea meds that she takes every 6 hours around the clock, then there's the electrolyte supplements. The chemo not only drops her counts, but her levels of magnesium and phosphorus. To remedy this problem we have to crush these enormous pills containing the supplements that she needs and make sure she gets them anywhere from 2-4 times a day. When you're dealing with a picky and very nauseous child, trying to find something to disguise a bitter tasting crushed pill becomes a very stressful situation. Sometimes just giving her the medicine makes her throw up and then we have to start all over again. When her counts are zero, we constantly have to worry about fever. She can spike a fever at any given moment and without warning and it can become a critical situation very quickly so you have to become OCD about everything she does. She can't eat after us, put her dirty hands in her mouth, put a toy in her mouth, eat any type of leftover food or drink, be around others who or sick or just a crowd of people in general, and on and on it goes. You see what I mean? The world of chemotherapy is a great distraction from the reality of why you're going through the chemotherapy. But there are these times, like tonight, where all of a sudden I remember why we're here. I am forced to think about what it would be like to hear the "bad news" and it tears me apart inside. I have to face reality for a little while and it eats me alive. To think about losing this precious little girl is almost more than I can handle. Sometimes it almost feels like she is a part of who I am, she runs through my veins on such a deep level that it almost hurts to hold her. The love I have for her in my soul is so intense that, at times, it brings me to tears. I think back to the days where things were so much more normal and I can remember all the little things that used to frustrate me so much and now I think---wake up!!! Oh my goodness, love your children, cherish your little ones, delight in their every breath! They are little but for a moment and then it's done. They might frustrate and irritate the living daylights out of you sometimes, but they're childhood is so innocent and so fleeting. I know I probably sound like a lunatic right now but my heart is bursting. My precious little girl is fighting cancer, a brain tumor, an uphill battle at best. That is her reality....and that is the reality that I am still trying to come to terms with. Tomorrow, this night will be behind me and I'll get lost once again in the daily routine of beating these chemo side effects. But for now I'll sit in this silence that seems to be shouting out at me, keeping me from finding any sort of rest and peace. I feel such an urge to pray endlessly tonight and so I will. Lord Jesus, you have to let me keep her. I cannot lose this little one as she is a part of my very being. Bind this tumor, rid her brain of this cancer, heal her little body. Give her this miracle....a Miracle for McKaylee. Jesus, please just give her this miracle....