The process of adjustment
Last Saturday, Charlotte walked into the nail salon, browsed the polishes to pick her colors, and climbed up into the little child sized pedicure seat, putting her little feet into the foot soak bath and let out a deep breath as if she had been doing this all of her life🤣Boy she sure looked like she could get use to this pampering! She had 2 little friends, and her sister Taylor along with one of her friends, all join her for her nail salon afternoon to celebrate her 4th birthday. They were all pamper with fresh orange slices rubbed on their little legs and foot soaks and a pedi/mani. We must have looked so crazy, treating these little people to such a lavish service at their age, but no one there could know Charlotte’s story. You can’t tell what she’s been through at a glance. No one could have known that Charlotte and I have played nail salon countless times while hospitalized and how doing our nails was such a good distraction from what she was going through. And now, she gets to be here, out in the world, where she can participate in nail salons if her heart desires. And so she did.
There are days I can see and feel Charlotte is adjusting somewhat better then her momma at being back in “the real world” again. Perhaps this is another hallmark signature of going through something traumatic as a child. Their resiliency is astounding and we thank god for that. Me and Brian? Well we are so grateful to be here in this place and time, exactly where we hoped and prayed to be. We made it through an unimaginable time, still going strong as a family, stronger in our faith, stronger in so many ways. But we are changed too. Speaking for myself, I seem to be teetering, trying to find my way back in the normal world outside of treatment. I feel moments of restless anxiety and I think it’s because I have gotten use to the heightened sense of alert you feel when your child’s life is in danger. It was for a very long time if not from cancer, from treatment. And even now we plan for this experimental trial and scans in December and whether or not to get her a flu shot or restart her immunizations while her immunse system is being tested during this year long clinical trial she is going through, and there are also upcoming assessments to monitor potential long term complications that could come from all the treatment she’s had....I could go on and on. A year and a half...it isn’t that long of time, really. And yet it seems like a lifetime in itself to us most days. Were there really ever days before cancer? I almost can’t remember. I almost can’t remember who I was and what I was wanting to do with my life and my passions and my gifts outside of being a care giver to all my little lovies, especially Charlotte.
Meanwhile, Miss Charlotte has seemlessly transitioned back to home life and even into Preschool, developing socially and emotionally as she should. Her siblings are getting use to having her around all the time, back in their space and sharing their time and our attention again. Brian continues to do what he does best, balancing being a Dad and husband while growing a business and providing the best service possible for his clients. But all of where we have been, the emotional piece, has perhaps just begun to truly catch up to us, like catching your breath after a race. We’ve been so focused on the goal, pulling our Charlotte through, that there wasn’t always time to process all the emotions. And maybe, any uneasy or anxious feelings we (I) feel are being felt as a means to shed them. Maybe, this is just part of the process that helps us heal and move on. We need to keep moving, keep going just like Charlotte. And although we believe this initial post treatment adjustment period we are going through is normal, like others who have gone through something traumatic, comes with the territory. But I gotta tell you all, I can’t for it to be over. For us to be through this tunnel and the world outside the hospital walls to feel familiar to me again instead of just a place I visit from time to time. No one should live in constant fear for their child. And we can’t watch her blossom and shine and laugh and play and love and grow and LIVE while wringing our hands from worry or anxiety from what was or what could yet to come. I know that isn’t Gods plan for us as her parents. So I have been praying and praying for God’s guidance here.
I had a low moment out of the blue, feeling some panic and anxiety the other day. I won’t go into the details but it’s hard to shake it off when it happens, often unprompted and out of the blue, when Charlotte asked to go on her swings after lunch. So I took her outside and pushed her. She was beaming and so happy and playful. She wanted me to take a beach ball in our yard and toss it to her while she swung on the round web swing we had. She sat, legs criss cross, laughing as she caught the ball or it bounced off her head, and then she threw it back. She then asked for me to take this spray water bottle, that she had carried down there earlier in the day, and lightly spray her while she swung. When I did, the position of the sun behind me shone in such a way that it made a rainbow in front of me every time I sprayed her. (I’ll include a picture below). A rainbow. Man made and simple but right when I needed it. I let it wash over me. I know God is still with her and with us. I know he will help us know what to do when decisions get hard, as we are facing several as I write this. And I felt that rainbow of hope speak to me in that moment. It shined across Charlotte as she swung and as we played. I think God wants us to have this time, this break and just be still. If we are still we can listen and hear. If we are still, we won’t miss the laughing little girl in front of our faces. If we are still, maybe we will hear and begin to understand where we are meant to go next on this journey.
There are days I can see and feel Charlotte is adjusting somewhat better then her momma at being back in “the real world” again. Perhaps this is another hallmark signature of going through something traumatic as a child. Their resiliency is astounding and we thank god for that. Me and Brian? Well we are so grateful to be here in this place and time, exactly where we hoped and prayed to be. We made it through an unimaginable time, still going strong as a family, stronger in our faith, stronger in so many ways. But we are changed too. Speaking for myself, I seem to be teetering, trying to find my way back in the normal world outside of treatment. I feel moments of restless anxiety and I think it’s because I have gotten use to the heightened sense of alert you feel when your child’s life is in danger. It was for a very long time if not from cancer, from treatment. And even now we plan for this experimental trial and scans in December and whether or not to get her a flu shot or restart her immunizations while her immunse system is being tested during this year long clinical trial she is going through, and there are also upcoming assessments to monitor potential long term complications that could come from all the treatment she’s had....I could go on and on. A year and a half...it isn’t that long of time, really. And yet it seems like a lifetime in itself to us most days. Were there really ever days before cancer? I almost can’t remember. I almost can’t remember who I was and what I was wanting to do with my life and my passions and my gifts outside of being a care giver to all my little lovies, especially Charlotte.
Meanwhile, Miss Charlotte has seemlessly transitioned back to home life and even into Preschool, developing socially and emotionally as she should. Her siblings are getting use to having her around all the time, back in their space and sharing their time and our attention again. Brian continues to do what he does best, balancing being a Dad and husband while growing a business and providing the best service possible for his clients. But all of where we have been, the emotional piece, has perhaps just begun to truly catch up to us, like catching your breath after a race. We’ve been so focused on the goal, pulling our Charlotte through, that there wasn’t always time to process all the emotions. And maybe, any uneasy or anxious feelings we (I) feel are being felt as a means to shed them. Maybe, this is just part of the process that helps us heal and move on. We need to keep moving, keep going just like Charlotte. And although we believe this initial post treatment adjustment period we are going through is normal, like others who have gone through something traumatic, comes with the territory. But I gotta tell you all, I can’t for it to be over. For us to be through this tunnel and the world outside the hospital walls to feel familiar to me again instead of just a place I visit from time to time. No one should live in constant fear for their child. And we can’t watch her blossom and shine and laugh and play and love and grow and LIVE while wringing our hands from worry or anxiety from what was or what could yet to come. I know that isn’t Gods plan for us as her parents. So I have been praying and praying for God’s guidance here.
I had a low moment out of the blue, feeling some panic and anxiety the other day. I won’t go into the details but it’s hard to shake it off when it happens, often unprompted and out of the blue, when Charlotte asked to go on her swings after lunch. So I took her outside and pushed her. She was beaming and so happy and playful. She wanted me to take a beach ball in our yard and toss it to her while she swung on the round web swing we had. She sat, legs criss cross, laughing as she caught the ball or it bounced off her head, and then she threw it back. She then asked for me to take this spray water bottle, that she had carried down there earlier in the day, and lightly spray her while she swung. When I did, the position of the sun behind me shone in such a way that it made a rainbow in front of me every time I sprayed her. (I’ll include a picture below). A rainbow. Man made and simple but right when I needed it. I let it wash over me. I know God is still with her and with us. I know he will help us know what to do when decisions get hard, as we are facing several as I write this. And I felt that rainbow of hope speak to me in that moment. It shined across Charlotte as she swung and as we played. I think God wants us to have this time, this break and just be still. If we are still we can listen and hear. If we are still, we won’t miss the laughing little girl in front of our faces. If we are still, maybe we will hear and begin to understand where we are meant to go next on this journey.
The surprise rainbow
Rainbowsat home one morning ❤️
Duke PBMT family support held a Halloween Costume Party at duke gardens last week. I surprised Taylor and Parker at school, picked them up a little early with a trunk full of costumes and we headed to Durham. It was lots of fun. I’ll include a funny video clip of Charlotte who was making sure she got her fair share of candy while trick or treating 😂
Duke held this outpatient event and the children played games and did crafts and went trick or treating at the Duke Gardens. It was really special and reminded us of how great it feels to be outpatient
Charlotte collected some leaves and said “look mommy! These leaves are rainbow re rainbow leaves!” And then she wanted to wash them in soapy water haha.
Deciding on her Halloween costume
At the nail salon with Taylor and a few of her friends ❤️
She was like a pro and acted like she has done this all her life🤣
With her Preschool class at school on a day they met the firemen
Washing mommy’s car and earning their keep 😆
Tugging with Lucy
Picked out her very own pumpkin at Preschool pumpkin Patch. She was so proud of this and even carried it with her to the pumpkin patch farm we went to as a family this past weekend haha.
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