The quiet, the storm
I know I’ve been quiet. But it’s not because I don’t have a lot to say. And I have been writing a lot. But my emotions have been so strong and honestly I wondered who I was writing it down for. This space here we’ve created has, at times, personally been therapeutic for me, but it’s intention isn’t to be a space for me to personally lay down and unpack all that I have inside. It’s a place to gather, together, and watch our girl Charlotte do amazing things along her journey. It’s a place to witness her as a reflection of God and his love and grace and strength. It’s suppose to be a space to watch her heal.
And so I’ve been quiet, but we are back in the storm. The lull and break in treatment is over. It is time for scans and time to begin the next phase of a brand new treatment that only MSK in NYC can offer. And so although I have so many things I want to say, and many things I don’t, for now I will just say that our sweet girl is feeling and doing GREAT. We need scans this week to reflect that her inside matches her outside. She is full of life. She is happy and energetic. She is silly, yet thoughtful. She is creative and spirited. All that she lost after she was diagnosed again in June and thrown back into treatment seems to be back (minus her hair but man does she have the sweetest and softest and cutest bald head and most adorable hats and head wraps!) She hasn’t looked or felt better since back in treatment. And we have had many “carefree” days full of normal, joyful life. But tomorrow she will have an MRI of her head and femur. Tuesday she will have a CT of chest, abdomen and pelvis, along with injection of the radioactive MIBG tracer for her MIBG scan which will be Wednesday. After 3 scan days at Duke (due to scheduling and coordinating difficulties they are on 3 different days😐), we will head up to NYC to review all findings with the doctors there on Thursday. We need her scans to be unremarkable with nothing new. We need her to keep moving, keep going.
Please please hit your knees for us and help God hear our prayers. Every scan is important, but the anxiety we have going into this one is as high as possible. Our ground now feels unsteady. Shaken. Uncertain. Our understanding foggy. Know that not for one minute do we believe our fears, but we fear them all the same. At the end of the day we are just 2 parents trying to hold together a family. We are not special, born with some unseen gift. We are not made with some tougher quality of material, carefully built to withstand this once...or twice. We are standing here in a Storm we hoped we had passed through and yet learned we were only in the calm eye. Thrust back into some space we keep trying to be clear of. We are 2 people trying to hold our children’s hands with as brave of a face as we can muster, with smiles and juggling schedules, and often humor that may not always feel authentic. We feel Gods grace and presence as certain as anything one can know, and I can not explain it any other way. Brian read this and told me this truth the other day: “God doesn’t call the equipped. He equips the called.” He equipped us with each other. He equipped us with YOU. He equipped us with whatever it is we have needed to get Charlotte and our family to today and we will keep believing He will continue to do so for all the days to come. And pray that His vision matches our own. We don’t need a miracle, God. We just want Charlotte to keep moving, and keep going. Can you equip her for that?
(Some pictures of her carefree days of late with friends and family, living LIFE)
And so I’ve been quiet, but we are back in the storm. The lull and break in treatment is over. It is time for scans and time to begin the next phase of a brand new treatment that only MSK in NYC can offer. And so although I have so many things I want to say, and many things I don’t, for now I will just say that our sweet girl is feeling and doing GREAT. We need scans this week to reflect that her inside matches her outside. She is full of life. She is happy and energetic. She is silly, yet thoughtful. She is creative and spirited. All that she lost after she was diagnosed again in June and thrown back into treatment seems to be back (minus her hair but man does she have the sweetest and softest and cutest bald head and most adorable hats and head wraps!) She hasn’t looked or felt better since back in treatment. And we have had many “carefree” days full of normal, joyful life. But tomorrow she will have an MRI of her head and femur. Tuesday she will have a CT of chest, abdomen and pelvis, along with injection of the radioactive MIBG tracer for her MIBG scan which will be Wednesday. After 3 scan days at Duke (due to scheduling and coordinating difficulties they are on 3 different days😐), we will head up to NYC to review all findings with the doctors there on Thursday. We need her scans to be unremarkable with nothing new. We need her to keep moving, keep going.
Please please hit your knees for us and help God hear our prayers. Every scan is important, but the anxiety we have going into this one is as high as possible. Our ground now feels unsteady. Shaken. Uncertain. Our understanding foggy. Know that not for one minute do we believe our fears, but we fear them all the same. At the end of the day we are just 2 parents trying to hold together a family. We are not special, born with some unseen gift. We are not made with some tougher quality of material, carefully built to withstand this once...or twice. We are standing here in a Storm we hoped we had passed through and yet learned we were only in the calm eye. Thrust back into some space we keep trying to be clear of. We are 2 people trying to hold our children’s hands with as brave of a face as we can muster, with smiles and juggling schedules, and often humor that may not always feel authentic. We feel Gods grace and presence as certain as anything one can know, and I can not explain it any other way. Brian read this and told me this truth the other day: “God doesn’t call the equipped. He equips the called.” He equipped us with each other. He equipped us with YOU. He equipped us with whatever it is we have needed to get Charlotte and our family to today and we will keep believing He will continue to do so for all the days to come. And pray that His vision matches our own. We don’t need a miracle, God. We just want Charlotte to keep moving, and keep going. Can you equip her for that?
(Some pictures of her carefree days of late with friends and family, living LIFE)
Prayers for all to be clear and good for Charlotte! XOXO
ReplyDeleteContinuing prayers for all... but all clear is what we will especially ask for... I love the pictures.
ReplyDelete