A rollercoaster in the twilight zone
We are on a roller coaster. A roller coaster in the twilight zone. You know, that alternate universe from 80’s TV? It’s the only explanation because none of what is starting to feel normal IS NORMAL. It’s a rollercoaster in the twilight zone, but we can’t get off and there is no escape in sight.
I type this thankfully while sipping a glass of wine because momma needs it. Although the RMH doesn’t allow alcohol, tonight is an exception as they had a huge and impressive soirée to celebrate their 40th anniversary. There were 4 floors decked out, music, food and desserts galore, broadway singers caroling, Santa, and thankfully a cocktail/wine bar.
How could it have been just this morning I was laying a dozen ice packs on our baby girl because she was in so much pain during the 3F8 infusion. She was able to receive pain rescues this time, thankfully, because her BP and vitals were perfect, but she had so much intense pain with about 6 minutes left of treatment yet it felt like 60. When the nurse told her she was doing so good and that it was almost over, Charlotte looked me straight in the eyes and cried “it’s NEVER going to be over.” I almost broke. The things she can say are so poignant at times and this felt like a missile right into my heart. Meanwhile, I’m rubbing and massaging and mastering the art of the ice packs and looking pitifully helpless I’m sure while I am cooing soft encouragement to her. A little 7 or 8 year old boy next door is pleading to God to help him and make it stop. He was having a rough time and I tried to tune it out but what parent could do that. I prayed for him and his parents while I watched Charlotte rest, her body collapsing after treatment. If this sounds dramatic, believe me I could go on. And yet it’s not much different then what she has had to go through in the past with the initial immunotherapy she would spend a week in patient for, or how tough both transplants were on her and us all where we spent months apart and inpatient, but then again we had believed we moved past those days. To relive it in this way again is so painful.
So to go from that kind of morning, back to RMH where we rested and she slept most of the afternoon, to a huge soirée with fancy food and cocktails and dancing....my head is spinning. None of this is normal. I know this. But yet it is starting to feel like “well, this is our life. This is what it is so let’s keep finding the silver lining. Let’s keep making lemonade.” But if I’m being honest, there is only so much lemonade one can drink before they question where the water is coming from. It’s all so bizarre sometimes it’s hard to know the difference between what’s real and what I tell myself and those whom love us so that it helps us all make sense of it all. Like there is a blur between what is real and what is idealistic? What helps you get through and is that in fact the truth? Or does that really matter?
But watching and helping Charlotte recover, snuggling her as she naps beside me, feeling her little hand squeezing mine, knowing her eyes search my face for comfort, getting to dance with her and watch her dance like no one is watching, seeing her embrace all of this in stride...all of that is truth. That is real. And that is what gives me the fuel and the grit to walk her back in on Friday for this life saving treatment. Because although Brian and I don’t believe she remembers the infusions or what she says during them when it’s all over, we both want to be able to answer her with “oh sweet girl, yes it will all be over one day. And all of this will be behind you.” And with Gods grace, only the dancing and laughing and loving people around her will have left its mark.
Thank you God for helping us navigate the strangest roller coaster one could never imagine. But if I can be honest, we’d like to get off.
I type this thankfully while sipping a glass of wine because momma needs it. Although the RMH doesn’t allow alcohol, tonight is an exception as they had a huge and impressive soirée to celebrate their 40th anniversary. There were 4 floors decked out, music, food and desserts galore, broadway singers caroling, Santa, and thankfully a cocktail/wine bar.
How could it have been just this morning I was laying a dozen ice packs on our baby girl because she was in so much pain during the 3F8 infusion. She was able to receive pain rescues this time, thankfully, because her BP and vitals were perfect, but she had so much intense pain with about 6 minutes left of treatment yet it felt like 60. When the nurse told her she was doing so good and that it was almost over, Charlotte looked me straight in the eyes and cried “it’s NEVER going to be over.” I almost broke. The things she can say are so poignant at times and this felt like a missile right into my heart. Meanwhile, I’m rubbing and massaging and mastering the art of the ice packs and looking pitifully helpless I’m sure while I am cooing soft encouragement to her. A little 7 or 8 year old boy next door is pleading to God to help him and make it stop. He was having a rough time and I tried to tune it out but what parent could do that. I prayed for him and his parents while I watched Charlotte rest, her body collapsing after treatment. If this sounds dramatic, believe me I could go on. And yet it’s not much different then what she has had to go through in the past with the initial immunotherapy she would spend a week in patient for, or how tough both transplants were on her and us all where we spent months apart and inpatient, but then again we had believed we moved past those days. To relive it in this way again is so painful.
So to go from that kind of morning, back to RMH where we rested and she slept most of the afternoon, to a huge soirée with fancy food and cocktails and dancing....my head is spinning. None of this is normal. I know this. But yet it is starting to feel like “well, this is our life. This is what it is so let’s keep finding the silver lining. Let’s keep making lemonade.” But if I’m being honest, there is only so much lemonade one can drink before they question where the water is coming from. It’s all so bizarre sometimes it’s hard to know the difference between what’s real and what I tell myself and those whom love us so that it helps us all make sense of it all. Like there is a blur between what is real and what is idealistic? What helps you get through and is that in fact the truth? Or does that really matter?
But watching and helping Charlotte recover, snuggling her as she naps beside me, feeling her little hand squeezing mine, knowing her eyes search my face for comfort, getting to dance with her and watch her dance like no one is watching, seeing her embrace all of this in stride...all of that is truth. That is real. And that is what gives me the fuel and the grit to walk her back in on Friday for this life saving treatment. Because although Brian and I don’t believe she remembers the infusions or what she says during them when it’s all over, we both want to be able to answer her with “oh sweet girl, yes it will all be over one day. And all of this will be behind you.” And with Gods grace, only the dancing and laughing and loving people around her will have left its mark.
Thank you God for helping us navigate the strangest roller coaster one could never imagine. But if I can be honest, we’d like to get off.
The day started like this
But ended like this❤️
Dancing Queen: you all need this smile. Watch her moves😂😍
Your welcome😍
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ReplyDeleteAwesome moves Charlotte! You've "got it"! Thank you. Hope the roller coaster lets you and your family off soon and successfully! XOXO
ReplyDelete