Hope for fuel
Charlotte is slowly coming out of this little shell she has built around herself. Being back in treatment again has been jarring for us all. But Charlotte seemed to have lost a piece of herself and her understanding of herself, her identity. Losing her hair is a big part of that. Going back into chemo, the pokes, the medications, the radiation. It’s been a lot on our girl, on our family, but she’s doing it. And really, she’s doing kind of great.
Going to Kindergarten for even just a 1/2 day has been HUGE for her self confidence and has helped remind her of her own voice. Charlotte had recently shied away from friends and from even speaking to many adults. The once out going, confident little girl has been acting timid, shy, and very uncertain of just about everything. It’s all understandable of course. But it is heartbreaking to watch her turn inward. She was starting to hide her face when someone would talk to her. She didn’t want to see some friends. She wouldn’t wear anything that would make her stand out. But within the past week, she is starting to come back to us. She still doesn’t want to dress up (will not wear any dresses or “pretty clothes” she says). She always loved getting dressed up and would put on lip gloss and jewelry and ask me to do her hair. She wouldn’t let me put lip gloss on her for church last Sunday. But right before we got into the car, I watched her walk back into her room and grab a little bracelet someone had given her that says “brave” in beads. When she slipped it on, I hid my smile. She’s coming back. She knows how much we think her bald head is beautiful! And she is having fun wear all the sweet hats gifted from some of you out there! I didn’t get to buy her even one because of all the hats that were sent her way! Her village, showering her with love as always. Thank you all.
Her appetite is coming back a little too. She has lost some weight and I had to ask friends if we could borrow some smaller shorts since she will not wear a dress right now. All her shorts are slipping off her waist and I had donated or handed down all of her old clothes last spring. But I know she will put the weight back on in time. Food has a metal taste to her right now. But she is so cooperative and knows she must eat to help herself heal and be strong. And so she does. And if she doesn’t finish what we think she should, I sneak it into her while she’s playing and such, one nibble at a time😊Nourishing and hydrating her is a part time job lately, but it is an important part of taking care of her while she is in this battle. And she has such a big battle ahead.
We wrap up radiation tomorrow! We want to celebrate that and we will for her sake. But finishing radiation doesn’t have the same peace in our hearts or finality as it did the first time when we hoped she really did finish radiation forever. She is recovering well from the last round of chemo and her counts have been so good she’s gotten many 1/2 days of school and lots of opportunities to play and have fun. All of the normalcy we’ve been able to infuse into our lives has been so so good for her spirit and for all of us. We think all of that is helping her emerge from her little shell she has built. Her little cocoon. And of course she’ll come out transformed like all things that build a protective case around themselves do in order to heal, grow, and hide. She is our butterfly, isn’t she?
Finding joy wherever and whenever and however we can is a must. Having fun is good medicine too. But I’ll be honest, at times Brian and I feel like we are going through the motions. We are tired and stressed and feel very out of rhythm. Thank you friends, family, for being gentle with us. For giving us space when we need it. For understanding when we are distant, or our minds are preoccupied. I’m
Not sure I know how to even be a good friend while going through this again. My mind doesn’t stop. Brian’s certainly doesn’t stop. He is juggling more then I can even say, but we know we aren’t doing any of this alone. We know sometimes it’s hard to know what to say. We know you love us and are here for us. We feel God with us too although I can’t understand Him right now. And sometimes when I talk to him, I struggle to find something nice to say to Him. But when we let the reality of all of this settle into our hearts, God seems to redirect our eyes. I recently felt a MUCH needed slap in the face and I realized, when we feel the weight pressing too hard, when we feel down or discouraged or afraid or doubtful, we need to remember that EVERY SINGLE DAY we are given is another day we have the chance to HEAL Charlotte! If we keep it simple and remind ourselves that all of this, all of it, is aimed at healing Charlotte for a lifetime of LIFE, then we have this hope as fuel. I think we all need special fuel from time to time. And hope is our fuel. And we do thank God for it every single day. We are thankful for the chance to fight, for the tools we have. I will write another day about the slap in the face I felt because there are 2 families that I promised I would ask our Village to pray for. So for now, when you pray for Charlotte, can you add Anna and Lincoln to your hearts and prayers. Maybe God will hear them too. Maybe He will help to write a surprise ending to their stories. God is so good at surprises.
Going to Kindergarten for even just a 1/2 day has been HUGE for her self confidence and has helped remind her of her own voice. Charlotte had recently shied away from friends and from even speaking to many adults. The once out going, confident little girl has been acting timid, shy, and very uncertain of just about everything. It’s all understandable of course. But it is heartbreaking to watch her turn inward. She was starting to hide her face when someone would talk to her. She didn’t want to see some friends. She wouldn’t wear anything that would make her stand out. But within the past week, she is starting to come back to us. She still doesn’t want to dress up (will not wear any dresses or “pretty clothes” she says). She always loved getting dressed up and would put on lip gloss and jewelry and ask me to do her hair. She wouldn’t let me put lip gloss on her for church last Sunday. But right before we got into the car, I watched her walk back into her room and grab a little bracelet someone had given her that says “brave” in beads. When she slipped it on, I hid my smile. She’s coming back. She knows how much we think her bald head is beautiful! And she is having fun wear all the sweet hats gifted from some of you out there! I didn’t get to buy her even one because of all the hats that were sent her way! Her village, showering her with love as always. Thank you all.
Her appetite is coming back a little too. She has lost some weight and I had to ask friends if we could borrow some smaller shorts since she will not wear a dress right now. All her shorts are slipping off her waist and I had donated or handed down all of her old clothes last spring. But I know she will put the weight back on in time. Food has a metal taste to her right now. But she is so cooperative and knows she must eat to help herself heal and be strong. And so she does. And if she doesn’t finish what we think she should, I sneak it into her while she’s playing and such, one nibble at a time😊Nourishing and hydrating her is a part time job lately, but it is an important part of taking care of her while she is in this battle. And she has such a big battle ahead.
We wrap up radiation tomorrow! We want to celebrate that and we will for her sake. But finishing radiation doesn’t have the same peace in our hearts or finality as it did the first time when we hoped she really did finish radiation forever. She is recovering well from the last round of chemo and her counts have been so good she’s gotten many 1/2 days of school and lots of opportunities to play and have fun. All of the normalcy we’ve been able to infuse into our lives has been so so good for her spirit and for all of us. We think all of that is helping her emerge from her little shell she has built. Her little cocoon. And of course she’ll come out transformed like all things that build a protective case around themselves do in order to heal, grow, and hide. She is our butterfly, isn’t she?
Finding joy wherever and whenever and however we can is a must. Having fun is good medicine too. But I’ll be honest, at times Brian and I feel like we are going through the motions. We are tired and stressed and feel very out of rhythm. Thank you friends, family, for being gentle with us. For giving us space when we need it. For understanding when we are distant, or our minds are preoccupied. I’m
Not sure I know how to even be a good friend while going through this again. My mind doesn’t stop. Brian’s certainly doesn’t stop. He is juggling more then I can even say, but we know we aren’t doing any of this alone. We know sometimes it’s hard to know what to say. We know you love us and are here for us. We feel God with us too although I can’t understand Him right now. And sometimes when I talk to him, I struggle to find something nice to say to Him. But when we let the reality of all of this settle into our hearts, God seems to redirect our eyes. I recently felt a MUCH needed slap in the face and I realized, when we feel the weight pressing too hard, when we feel down or discouraged or afraid or doubtful, we need to remember that EVERY SINGLE DAY we are given is another day we have the chance to HEAL Charlotte! If we keep it simple and remind ourselves that all of this, all of it, is aimed at healing Charlotte for a lifetime of LIFE, then we have this hope as fuel. I think we all need special fuel from time to time. And hope is our fuel. And we do thank God for it every single day. We are thankful for the chance to fight, for the tools we have. I will write another day about the slap in the face I felt because there are 2 families that I promised I would ask our Village to pray for. So for now, when you pray for Charlotte, can you add Anna and Lincoln to your hearts and prayers. Maybe God will hear them too. Maybe He will help to write a surprise ending to their stories. God is so good at surprises.
Making Taylor a get well card while getting chemo in the day hospital clinic at duke❤️ She was home sick with a cold that day. Charlotte also brought Kindergarten work to keep up with while getting her chemo infusions
Kidz Bop concert with friends!! So much fun. Charlotte danced and loved it!
Turned a sweet head wrap from her Caterpillar tea her into a mini skirt 😂 Leave it up to Charlotte. Miss Fashionista
She made this counting hat in Kindergarten and happily wore it all the at yo radiation. Warmed my heart watching her be a typical Kindergartener proudly wearing what she made 🥰
Sweet goofball
Kidz Bop fun with friends
Doing Kindergarten assignment during chemo❤️ We will do all we can to keep her with her class, learning all she should while undergoing everything this year. Often while waiting her turn for radiation, we will practice reading her sight words, or practice reciting her student number, address, phone number, etc. There is always something to be practicing and she just loves every proud moment of being part of her class
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