The shadow of death
I know, it's been awhile. I can't really say I have some great excuse for not blogging, it's more like I've just been too busy being a mom. Things have been good, though. Our summer has been so incredible, I think we've managed to cram fun into every moment of every day. I am so thankful that McKaylee's good health has continued, we really needed a summer like this.
Unfortunately, life sort of came crashing back down on us a few days ago. Completely out of the blue, McKaylee started complaining of a headache the other night. She had been a bit grumpy and sleepy before the headache began but I didn't think much of it at the time. About thirty minutes after she started complaining of a headache, the pain became so severe that she burst into tears, grabbing her head and crying out. I was terrified. I had already taken her temperature and was surprised to find that it was completely normal. About an hour after the headache began, she started vomiting. If I could explain the feeling I had in the pit of my stomach at that moment, it would be very similar to the feeling I had when McKaylee was first diagnosed with cancer. It's like someone sucks the breath out of you, like you're completely empty.
Brain tumors are unpredictable. You never really know what they're going to do or when they're going to do it....they just seem to have a mind of their own. The doctors told us a long time ago that at any time, McKaylee's tumor could start to grow again and we would see symptoms like headaches, vomiting, lethargy, irritability, loss of balance, etc. The symptoms can start off slowly and become more progressive over time or they can just hit hard and fast. For awhile after they shared this information with us, I felt completely on edge. Every clumsy fall McKaylee had became a sign to me that her tumor was growing. Every time she cried, I assumed it was out of pain and that had to mean her tumor was growing. It was a maddening state to be in and it took me a long time to trust God enough to climb out of the fear that had consumed me. But as time went on and her tumor remained stable, I began to trust in our tomorrows instead of being fearful of what was around the next corner. Trust is a funny thing, it takes so long to build it and only a moment to destroy it. That's what happened the other day when I saw my little McKaylee in so much pain, my trust, my belief in tomorrow, was damaged.
I can't say that I hate it when things like this happen because I don't. I hate that my little girl has ever had to suffer and I hate all of the things that she has had to go through but I sincerely appreciate the things I have learned from it. Everytime we have experienced a crisis, God has been waiting in the midst of it, ready to teach me something new. It's a hard way to learn but it's also the best way. Lessons learned like that are not easily forgotten. What I learned the other day was that I was starting to forget, starting to lose the perspective in life I had gained through McKaylee's trauma. I had started taking things for granted, life was too comfortable and I was slowly becoming self-sufficient. I tend to do that sometimes. I was blocking God out--- after all, life was great and I didn't need to lean on Him as heavily. But in that moment, as I was reminded of how fragile my little girl's life really is, I hit my knees in prayer. I hate that it takes something so sobering to bring me back to Christ. By now, I would have thought that my entire world would rest in the court of a Savior who has saved the life of my little girl time and again.
I have cried out to God each and every night since that "incident" with McKaylee. I have begged Him for her health, begged for more time with her, pleaded for His mercy to reign down on us. I've had to come face to face with the reality and the possibility of losing her. I cannot explain the way it makes me feel when I entertain the idea of God taking her from us. And it probably seems crazy that I would even think about stuff like that but you'd be surprised the thoughts that go through your mind when you have a child with cancer. She's got a 5% chance of making it to her 5th birthday and there are too many days where I feel like we are running out of time. I just want to see more of who she becomes, to delight in her milestones and to have the privilege and the pride of watching her blossom into a young girl. I just want more.
July 23 will mark one year since she's completed chemotherapy, an entire year off chemo....that's huge in the world of cancer. And in that year, there have only been a handful of times that I have even thought about losing her. Life has been so amazingly normal and I am so thankful that we've had this time together as a family, it's just what we needed. But a year is not enough time, I need more than that. I can't even put into words what McKaylee means to me. Every part of who she is amazes me, her smile, her eyes, her giggle, her chunky legs....I absolutely adore her. And her spirit is precious. She has the best attitude in life and she has every reason to hate the world. I find that simply amazing.
So at the end of the day, we have no answers as to what tomorrow holds. There's part of me that feels like we're back to living one day at a time, moment by moment. But we're also back to appreciating every minute of every day together, realizing that there are no guarantees. As much as I hate having to learn things through trauma, I'm smart enough to know that it's the only way I'll learn them. I know God wants my vulnerability, He wants my weakness to shine to highlight His strength. And I know He wants me to cherish every moment of my little McKaylee's life so I won't ever have to look back one day and wish I had done things differently.
Someone once told me that there would always be times where God allowed bumps along this road to keep us believing in His constant presence. She said there would be times that would be so scary that it would almost be like a "shadow" of death. A shadow that threatens to steal from us the things we hold so dearly in life. And then she quoted this verse, which resonates with me constantly these days, "Yea, though I walk through the valley of the shadow of death, I will fear no evil; for Thou art with me."
Unfortunately, life sort of came crashing back down on us a few days ago. Completely out of the blue, McKaylee started complaining of a headache the other night. She had been a bit grumpy and sleepy before the headache began but I didn't think much of it at the time. About thirty minutes after she started complaining of a headache, the pain became so severe that she burst into tears, grabbing her head and crying out. I was terrified. I had already taken her temperature and was surprised to find that it was completely normal. About an hour after the headache began, she started vomiting. If I could explain the feeling I had in the pit of my stomach at that moment, it would be very similar to the feeling I had when McKaylee was first diagnosed with cancer. It's like someone sucks the breath out of you, like you're completely empty.
Brain tumors are unpredictable. You never really know what they're going to do or when they're going to do it....they just seem to have a mind of their own. The doctors told us a long time ago that at any time, McKaylee's tumor could start to grow again and we would see symptoms like headaches, vomiting, lethargy, irritability, loss of balance, etc. The symptoms can start off slowly and become more progressive over time or they can just hit hard and fast. For awhile after they shared this information with us, I felt completely on edge. Every clumsy fall McKaylee had became a sign to me that her tumor was growing. Every time she cried, I assumed it was out of pain and that had to mean her tumor was growing. It was a maddening state to be in and it took me a long time to trust God enough to climb out of the fear that had consumed me. But as time went on and her tumor remained stable, I began to trust in our tomorrows instead of being fearful of what was around the next corner. Trust is a funny thing, it takes so long to build it and only a moment to destroy it. That's what happened the other day when I saw my little McKaylee in so much pain, my trust, my belief in tomorrow, was damaged.
I can't say that I hate it when things like this happen because I don't. I hate that my little girl has ever had to suffer and I hate all of the things that she has had to go through but I sincerely appreciate the things I have learned from it. Everytime we have experienced a crisis, God has been waiting in the midst of it, ready to teach me something new. It's a hard way to learn but it's also the best way. Lessons learned like that are not easily forgotten. What I learned the other day was that I was starting to forget, starting to lose the perspective in life I had gained through McKaylee's trauma. I had started taking things for granted, life was too comfortable and I was slowly becoming self-sufficient. I tend to do that sometimes. I was blocking God out--- after all, life was great and I didn't need to lean on Him as heavily. But in that moment, as I was reminded of how fragile my little girl's life really is, I hit my knees in prayer. I hate that it takes something so sobering to bring me back to Christ. By now, I would have thought that my entire world would rest in the court of a Savior who has saved the life of my little girl time and again.
I have cried out to God each and every night since that "incident" with McKaylee. I have begged Him for her health, begged for more time with her, pleaded for His mercy to reign down on us. I've had to come face to face with the reality and the possibility of losing her. I cannot explain the way it makes me feel when I entertain the idea of God taking her from us. And it probably seems crazy that I would even think about stuff like that but you'd be surprised the thoughts that go through your mind when you have a child with cancer. She's got a 5% chance of making it to her 5th birthday and there are too many days where I feel like we are running out of time. I just want to see more of who she becomes, to delight in her milestones and to have the privilege and the pride of watching her blossom into a young girl. I just want more.
July 23 will mark one year since she's completed chemotherapy, an entire year off chemo....that's huge in the world of cancer. And in that year, there have only been a handful of times that I have even thought about losing her. Life has been so amazingly normal and I am so thankful that we've had this time together as a family, it's just what we needed. But a year is not enough time, I need more than that. I can't even put into words what McKaylee means to me. Every part of who she is amazes me, her smile, her eyes, her giggle, her chunky legs....I absolutely adore her. And her spirit is precious. She has the best attitude in life and she has every reason to hate the world. I find that simply amazing.
So at the end of the day, we have no answers as to what tomorrow holds. There's part of me that feels like we're back to living one day at a time, moment by moment. But we're also back to appreciating every minute of every day together, realizing that there are no guarantees. As much as I hate having to learn things through trauma, I'm smart enough to know that it's the only way I'll learn them. I know God wants my vulnerability, He wants my weakness to shine to highlight His strength. And I know He wants me to cherish every moment of my little McKaylee's life so I won't ever have to look back one day and wish I had done things differently.
Someone once told me that there would always be times where God allowed bumps along this road to keep us believing in His constant presence. She said there would be times that would be so scary that it would almost be like a "shadow" of death. A shadow that threatens to steal from us the things we hold so dearly in life. And then she quoted this verse, which resonates with me constantly these days, "Yea, though I walk through the valley of the shadow of death, I will fear no evil; for Thou art with me."
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