The things you don't know
I know you don't realize your childhood is different from anyone else's. I'm sure you've never realized that most kids your age don't have a port in their chest. I know you think our trips to St. Jude's are just a regular doctor's check up and I've noticed how often you seem to overlook the obstacles in your life as you battle through cancer. And although I'd never clue you in to any of this right now, maybe one day you'll want to know. So here's all the things you don't know....
When I rub your back as you're falling asleep, I'm always checking each bump in your spinal column for a tumor. Maybe that's crazy but it's become a nightly routine.
Everytime you wake up in the morning and toddle into my room, I say a silent prayer of thanks for another day with you.
Everytime you seem tired during the day, I have to remind myself to breathe because my first thought is "return of cancer symptoms".
Everytime you run, I can't help but smile because I remember the days where you didn't have the energy to even walk.
Anytime you fall down or get hurt, my heart stops and I can literally feel anger rising into me. I just can't stand to see you in anymore pain. I want to keep you as safe as I can for as long as I can.
Sometimes I watch you in the early morning before we've gotten out of bed and I think about everything you've been through. This is a huge part of my answered prayers, just having these little moments with you....life uninterrupted.
Anytime you complain of something hurting, it takes a lot of self control for me to balance a healthy concern with overwhelming fear and worry.
I love to look at pictures of you from St. Jude's. It's amazing to me to see just how far you've really come.
Everytime I rub your head and feel the shunt that is close beneath your scalp, I always think about the first brain surgery you had. There's one moment in my mind that I replay over and over again...the look on your neurosurgeon's face when he came in to tell us that you had a brain tumor. I could see it in his eyes before he ever opened his mouth and at that moment, my life changed forever.
I secretly think it's precious that you adore having a pacifier at night. There's a part of me that knows you're nearing the age where we should break this habit but there's another part of me that wants to keep you little forever.
I get anxious with every birthday that you have. Call it a lack of faith if you will, but with each passing year, I feel like we're running out of time. I know that's awful but it's the truth.
I also get extremely emotional with every birthday you have. Along with my apprehension of the future comes this incredible sense that we have made it another year with you.
I often wonder how all of this will shape your life one day. Will you remember any of this? Will it affect you forever the way it has me? Will you ever know how hard you fought and how brave you really were?
In closing, my precious McKaylee, I love you. I hope and pray to God that you never have to relive any of the things you have endured in your little life. I know you are already starting to forget your days at St. Jude's. Just today you saw a picture of yourself with a mask on and you couldn't figure out who that "little girl" was and why she had that funny thing on her face. It's a blessing that you don't remember this. Thankfully, I do remember and I pray I will never forget. Who you were in those months of suffering has worked to shape who I am today and the perspective in life God has given me. As awful as it is, suffering and pain can be used by Christ to teach us things we would have never found otherwise. And so, one day, when you're ready, I'll read this to you and hope that you can see what I have seen in all of this. You are amazing, you are a fighter, your life is a testimony to God's power, strength and mercy and you, my sweet girl, are a miracle. This journey we have traveled has been anything but ordinary and, even though we've been told that your future is uncertain, I consider it a blessing to be a part of your life and this brave battle that you are fighting. I knew you were something special the day that you were born but it never occurred to me that God had blessed me with an angel.
When I rub your back as you're falling asleep, I'm always checking each bump in your spinal column for a tumor. Maybe that's crazy but it's become a nightly routine.
Everytime you wake up in the morning and toddle into my room, I say a silent prayer of thanks for another day with you.
Everytime you seem tired during the day, I have to remind myself to breathe because my first thought is "return of cancer symptoms".
Everytime you run, I can't help but smile because I remember the days where you didn't have the energy to even walk.
Anytime you fall down or get hurt, my heart stops and I can literally feel anger rising into me. I just can't stand to see you in anymore pain. I want to keep you as safe as I can for as long as I can.
Sometimes I watch you in the early morning before we've gotten out of bed and I think about everything you've been through. This is a huge part of my answered prayers, just having these little moments with you....life uninterrupted.
Anytime you complain of something hurting, it takes a lot of self control for me to balance a healthy concern with overwhelming fear and worry.
I love to look at pictures of you from St. Jude's. It's amazing to me to see just how far you've really come.
Everytime I rub your head and feel the shunt that is close beneath your scalp, I always think about the first brain surgery you had. There's one moment in my mind that I replay over and over again...the look on your neurosurgeon's face when he came in to tell us that you had a brain tumor. I could see it in his eyes before he ever opened his mouth and at that moment, my life changed forever.
I secretly think it's precious that you adore having a pacifier at night. There's a part of me that knows you're nearing the age where we should break this habit but there's another part of me that wants to keep you little forever.
I get anxious with every birthday that you have. Call it a lack of faith if you will, but with each passing year, I feel like we're running out of time. I know that's awful but it's the truth.
I also get extremely emotional with every birthday you have. Along with my apprehension of the future comes this incredible sense that we have made it another year with you.
I often wonder how all of this will shape your life one day. Will you remember any of this? Will it affect you forever the way it has me? Will you ever know how hard you fought and how brave you really were?
In closing, my precious McKaylee, I love you. I hope and pray to God that you never have to relive any of the things you have endured in your little life. I know you are already starting to forget your days at St. Jude's. Just today you saw a picture of yourself with a mask on and you couldn't figure out who that "little girl" was and why she had that funny thing on her face. It's a blessing that you don't remember this. Thankfully, I do remember and I pray I will never forget. Who you were in those months of suffering has worked to shape who I am today and the perspective in life God has given me. As awful as it is, suffering and pain can be used by Christ to teach us things we would have never found otherwise. And so, one day, when you're ready, I'll read this to you and hope that you can see what I have seen in all of this. You are amazing, you are a fighter, your life is a testimony to God's power, strength and mercy and you, my sweet girl, are a miracle. This journey we have traveled has been anything but ordinary and, even though we've been told that your future is uncertain, I consider it a blessing to be a part of your life and this brave battle that you are fighting. I knew you were something special the day that you were born but it never occurred to me that God had blessed me with an angel.
Comments
I have a quick question about your blog, would you mind emailing me when you get a chance?
Thanks,
Cameron
cameronvsj(at)gmail.com