Living her best life

Where do I start? This has been the longest stretch of silence on Charlotte’s care page. I will try to keep this “short and sweet”, but our girl has been LIVING LIFE! 

How has Charlotte been you ask?

1. She’s been hard to keep up with. She just finished playing 5 year old soccer. She is wrapping up dance with her first recital next weekend. She is absolutely IN LOVE with gymnastics in which she takes for 1 hour every week. She just started on our neighborhood swim team after watching from the sideline all these years. She just FINISHED preschool and is officially on her summer break until Kindergarten begins for her on July 15!
2. She lost her first tooth a couple weeks ago and now this week her second
3. She bravely, tenderly, and lovingly said goodbye as did all of us, to our sweet fur baby Lucy. Lucy was the best dog and so so loved by us all. Watching her slowly go downhill and needing to walk the kids through saying goodbye was harder then Brian and I imagined, but actually saying goodbye to our pup and holding her in a peaceful spot in our backyard was another indescribable moment all together. Losing Lucy has brought many feelings to the surface within us all but we are so blessed to have been able to love her for 12 years. Every waking day of the children’s lives and a year and a half before we became parents, Lucy has been in our family. Right now it is raw and feels like someone is missing in our family every single day. Charlotte, as did we all, had her own special relationship with Lucy or “guh gir” as she would call her when she started talking. We miss her so much it hurts.
4. If Charlotte isn’t involved in some fantastical and beyond imaginative craft every single day, then something’s wrong😆
5. She makes her bed on her own accord every single morning 🤷🏻‍♀️😍
6. She absolutely hates arm pits and will no longer lay in the crook where my arm meets my shoulder most days unless she’s not paying attention😂
7. She is becoming a social butterfly
8. She wants music, specifically voice lessons, and has an almost perfect pitch when singing as well as an ear and a memory for a melody. It’s quite remarkable for age.
9. She is writing with inventive spelling and starting to read a little
10. She is becoming quite a strong swimmer and swam across the entire 25 meter pool unassisted tonight
11. She just got her first passport and we are taking all the kids on a special work trip of Brian's to the Bahamas in July 
12. She continues to be very affectionate and cuddly and loving. Although out going, she can be quite the home body and I hope she hasn’t had it too good at home lately so that she doesn’t want to stay all day in Kindergarten🤪
13. She has scans and clinic June 12-13 so we will hold our breath like always. Lately she has complained randomly that something hurts in her belly and sometimes her leg. Needless to say she is so active it could be muscle related and yet every single time Brian and I exchange worries glances and remarks and we know no “off” sensation or discomfort is ever a simple brush off with her any more. Please pray
14. She has her hearing tested again next week. We will continue to monitor in case she needs support in her classroom next year
15. She has Neuroblastoma friends, some she knows and others she doesn’t but I call them friends in my heart because they have been absolutely laid on my heart for some time now, and several of these friends are not doing well. The one you all know of best, Jacob, who is Charlotte’s age and whose mother I have had the honor to get to know and talk with over the years when we met back at Duke when Charlotte was shy of 3, has recently received devastating news. His stubborn cancer which required additional treatment but eventually helped him be clear and on the vaccine trial, has gotten news that his cancer has returned in a very aggressive form. He is now considered chronic and incurable and only on palliative care for comfort and to give some quality of life. He is running and playing and happy with no signs right now. Please pray for him and his family with us. This hits us so close. There are many other friends whose disease has no where near responded like Charlotte’s has. There road harder then I can imagine given what we watched Charlotte go through. And to do this without getting better....heart breaking is an understatement. We ask God for peace if not clarification or direction. What is there to do with this information?
16. Charlotte continues to feel more deeply then most 5 year olds we think. I guess we will never know that 2 and 1/2 year old girl in the picture on the front page of this blog. She never grew up. Instead, the Charlotte we know and are in awe of stands before us ready to grow up and live her best life. We recently went to Duke PBMT’s rainbow walk for hero’s like we tend to do every spring. We see our old doctors and nurses and sometimes fellow patients we shared a floor with back on 5200. Some families are there without their child, feeling their loss when we release the balloons in honor and memory. Charlotte's face is still on the huge board along with many, many other children, some of who are here and some who are not. She asked about Austin, her friend and the little boy who stole our hearts and helped make what Charlotte was going through somewhat bearable while inpatient. They became fast friends and a comfort to each other through the unspeakable. She didn’t recognize him on the board because how could she, every time they saw each other they were wearing their masks to protect themselves and each other. His pictures were of him healthy and happy and without his mask. On the ride home she was very quiet, staring out her car window. Tears started forming and when we asked her if she was ok she simple said “I am feeling sad about Austin.” She knows he isn’t here. She knows there are children who become angels and she was processing that at 5, in the quiet stoic way she has sometimes. What I wouldn't give to take her pain, or Austin’s family’s pain, or any of these children’s and families pain away. What do we do with these thoughts? I guess time will tell. We must do something. "To those whom much is given, much is expected." Luke 12:18

You may not know this, but I write 99% of these blog posts on my phone often in a fury, not always worrying about grammar and punctuation and spelling because my fingers cannot keep up with my mind. The last time I wrote here was 2 MONTHS ago. I needed to step back. I needed to try to not record Charlotte's journey though the lens of a cancer parent for a little while. I needed to soak her up for her last weeks of being home with me, of sweet carefree preschool days, of family time, not consumed with the worries of the present or past. I tried to unplug while remaining in contact with some of the ongoings in the Neuroblastoma world and with some of the families I’ve come to care so deeply for. But I wanted to jot these thoughts tonight down to you all and to let you know your girl is DOING IT Y'ALL. She is doing every single blessed thing you have prayed for. She is living her best life.

Oh lord, please help her keep doing it. Thank you for every single moment God. ❤️🌈

#charlottestrong

Random pictures below of Charlotte’s pure sweet bliss (sorry for the random order...I had trouble loading them in correct order I guess)

Easter

special treat at ice cream shop after shots at pediatrician appointment

Duke's Rainbow Walk for Hero's

Our last family picture with Lucy before we said goodbye the next day

fun with a friend at her dance studio's PJ party

Mother's Day weekend impromtu beach day

taking care of Lucy

backyard picnic

dress rehearsal for tap

Duke PBMT's rainbow walk for heros

her hero Daddy at her spring program for preschool

summertime!

Last sweet family time with Lucy

lunch time with my girl. I'm so going to miss her

 

Strawberry farm picking.  She asked to make strawberry cupcakes for families we volunteered to serve who are part of an amazing organization called Family Promise. We hosted dinner at church periodically, volunteering with other church members to care for these families who are housing insecure. Its one of my favorites things we have begun to do as a family

Boat time with friends for daddy's birthday

fun with Grandma and Choo Choo

bringing her muscles to gymnastics!

impromtu beach trip for mothers day!

lost first tooth!

our soccer girl runs hard

last day of preschool!

dress rehearsal for Tap

dress rehersal for Ballet (her class is combined tap and ballet for an hour once a week)

2 teeth gone!  TAylor lost a premolar same night CHarlotte lost her second tooth. SHe was so excited the tooth fairy would visit them both on the same night

Her amazing Caterpillar teachers, Mrs Stacey and Mrs. Courtney