Swimming and baths and living Oh My
To say Charlotte is beyond excited about being able to join her big brother and sister in the pool is an understatement. We braved a stormy sky with dark clouds spitting rain on Friday night because we promised her all week we would take her swimming Friday when daddy got home from work. The site on her chest where her central line was placed has healed. She couldn't wait. The storm held off so, through periods of light rain, Charlotte literally JUMPED in the pool for her first time in a year. She didn't want to get out. Through the rain, her joy shined. She picked up where she left off when she was 2 by repeatedly and fearlessly jumping into our arms and swimming under the water like a fish. She even decided to go down the slide several times holding my hand and landing in daddy's arms. What a special moment it was to watch her do what her heart has wanted for so long. A simple thing: swimming. But to her, a mountain of a climb to get herself to this place where she can.
That night, as a few of our friends joined us, I said to Brian "wow it would be so cool to see a rainbow right about now." As if on cue, God sent us one. Our friend Katie text messaged me a rainbow she was currently looking at while on a drive out of our town. Isn't it amazing how these rainbows don't always appear directly in front of us and yet getting them from all of you truly feels like they are right here, shining brightly in plain view. What a powerful and special message of hope and love they are for us.
These days, you can find our girl happily splashing in the pool or bathtub, chasing her friends or siblings around, skipping in the most carefree way you can imagine, singing in a cute yet pestering way while her brother or sister tries to practice piano lessons, quietly writing/drawing at her new desk in her room that was handed down by her sister Taylor, helping mommy cook or do projects around the house, building forts, pretending to be a hawk or dolphin or wild cat, painting her nails, riding her bike or scooter, and exploring just about anything she can because YOU WON'T FIND HER squeezing in life between hospital stays and clinic appointments. She doesn't have to be nursed back to health after side effects from these amazing life saving medications. She isn't in pain or exhausted. Right now, she looks and acts just like a typical 3 year old who possibly had some fun with scissors when her parents weren't looking😆. She is so proud of her hair growing, her tubies being out, her dressing changes a memory. She is even, for the FIRST time in 17 months, not taking any medications for anything! It's been a week since she finished her oral chemo/Retinoic acid finishing round 5 of immunotherapy. She has another week off before the last round of this Accutane that completes her treatment. Can you imagine the freedom she feels? The freedom all 5 of us feel? It is truly indescribable.
How long will this be? We cannot know. Is she really a typical 3 year old? No and she never will be, will she? And honestly, even now, we still have to limit exposure to the sun and she still has some mood swings due to the Accutane she just finished and will start again in a week. She is still technically immunosurpressed even though her bone marrow is operating beautifully. She will still need to be reimmunized over the next few years as if she was a newborn baby. Her only chance at starting preschool is because the other children are required to be immunized. Her body may still have some memory of some immunizations but we do not know the extent of this yet and we will begin this process within the next few months. And....we still have end of treatment scans pending in early September after she finishes this last round of the at home immunotherapy medication (Accutane). I don't think I could ever truly express how Brian and I feel as scans approach and we wait for results. For me, it feels like waiting on a diagnosis all over again. And those feelings of anxiety and fear will be part of our normal for years as she has scans every few months. But God has shown us more grace then I ever knew possible. His gifts to us have carried us all this time so I know in my heart we will continue to feel them even in those torturous days of waiting during scans. Every moment, no matter how hard, so worth it because, here we are, living and witnessing the indescribable with our Charlotte. Thanks for keeping those prayers going you all. They continue to light our way❤️🌈
That night, as a few of our friends joined us, I said to Brian "wow it would be so cool to see a rainbow right about now." As if on cue, God sent us one. Our friend Katie text messaged me a rainbow she was currently looking at while on a drive out of our town. Isn't it amazing how these rainbows don't always appear directly in front of us and yet getting them from all of you truly feels like they are right here, shining brightly in plain view. What a powerful and special message of hope and love they are for us.
These days, you can find our girl happily splashing in the pool or bathtub, chasing her friends or siblings around, skipping in the most carefree way you can imagine, singing in a cute yet pestering way while her brother or sister tries to practice piano lessons, quietly writing/drawing at her new desk in her room that was handed down by her sister Taylor, helping mommy cook or do projects around the house, building forts, pretending to be a hawk or dolphin or wild cat, painting her nails, riding her bike or scooter, and exploring just about anything she can because YOU WON'T FIND HER squeezing in life between hospital stays and clinic appointments. She doesn't have to be nursed back to health after side effects from these amazing life saving medications. She isn't in pain or exhausted. Right now, she looks and acts just like a typical 3 year old who possibly had some fun with scissors when her parents weren't looking😆. She is so proud of her hair growing, her tubies being out, her dressing changes a memory. She is even, for the FIRST time in 17 months, not taking any medications for anything! It's been a week since she finished her oral chemo/Retinoic acid finishing round 5 of immunotherapy. She has another week off before the last round of this Accutane that completes her treatment. Can you imagine the freedom she feels? The freedom all 5 of us feel? It is truly indescribable.
How long will this be? We cannot know. Is she really a typical 3 year old? No and she never will be, will she? And honestly, even now, we still have to limit exposure to the sun and she still has some mood swings due to the Accutane she just finished and will start again in a week. She is still technically immunosurpressed even though her bone marrow is operating beautifully. She will still need to be reimmunized over the next few years as if she was a newborn baby. Her only chance at starting preschool is because the other children are required to be immunized. Her body may still have some memory of some immunizations but we do not know the extent of this yet and we will begin this process within the next few months. And....we still have end of treatment scans pending in early September after she finishes this last round of the at home immunotherapy medication (Accutane). I don't think I could ever truly express how Brian and I feel as scans approach and we wait for results. For me, it feels like waiting on a diagnosis all over again. And those feelings of anxiety and fear will be part of our normal for years as she has scans every few months. But God has shown us more grace then I ever knew possible. His gifts to us have carried us all this time so I know in my heart we will continue to feel them even in those torturous days of waiting during scans. Every moment, no matter how hard, so worth it because, here we are, living and witnessing the indescribable with our Charlotte. Thanks for keeping those prayers going you all. They continue to light our way❤️🌈
She swims
What a moment
Scooter ride in the park with her friend Brady
Learning to play slap jack
Shopping and lunch date with Grandma and mommy
Asking Grandma to tell her stories about when mommy was naughty 😆
Helping mommy
She keeps asking if she can lay back or lay on her belly while in the bath. She is so happy to be "tubie" free
Big brother Parker time
Found an old Soda Shoppe in a neighboring town
These three amigos❤️
Making her own rain to play in. Thanks for the rainbow umbrella Gibson Cousins
Painting our nails
Snuggles with Minnie and daddy
Proud of her new desk. She loves sitting her writing and coloring and doing whatever craft she invents
Fun with a visit from our Gibson Cousins
Rainbows and prayers that keep paving our way:
Have you ever seen a rainbow around the sun?? Incredible
A vertical one the day her line was removed!
Shelley and family keep seeing rainbows above their hoise in Baltimore
Silly song she made up
Bath time joy
Comments
Post a Comment