A heart breaking reality
I had written those other 2 posts (God Winks and getting Annemarie'd) last week while inpatient but I started and stopped them so often because of Charlotte's needs and my own exhaustion that I never got to proof and publish them. So I apologoze for the all of a sudden 3 posts published back to back tonight. But I really do try to be authentic and capture all of Charlotte's moments...I like and need to visualize her grown up and reading all of this one day when we feel she is ready. Maybe she will see and inspire herself all over again one day. Maybe Brian and I will make her proud. Maybe this care page turned journel will honor her and all of those who have rode along praying right beside her. She will read-see-feel the love we have all poured over her this year when the time is right one day. So I like to leave no detail out and no stone unturned in revealing her journey here in this space we've created. Here with you all.
Number one, we are HOME. Came home Friday evening and thanks to Nana (Dottie), who came to care for the children and help out back here at home all week while Charlotte was hospitalized, we've had a weekend full of each other instead of a lot of catch up domestic work. Nana did so much work around our home, there wasn't even one item left to launder and that's saying volumes for our family of 5!! And she showered Taylor and Parker with love and attention which is the most important duty of all. We are so so grateful she was able to be here this week.
Second, I wish I could say Charlotte is feeling good. It's been so long since we've seen her sweet smile. She continues to recover but today she gave us some insight into a heart breaking reality. Charlotte is growing up in this setting and she's becoming much more aware of what is right and wrong, what is normal and what is not. From how she feels to how she looks to what we have to do etc. Today, sitting on the couch snuggled up with Brian and I, she said to us in such a resigned way "Mommy? What's wrong with me?" To say this made my heart break is an understatement. She knows she's not feeling right. She knows she just had a rough 2 weeks. She now really knows this isn't something that happens to all children. She is comparing herself to others. She sees Taylor glittering around effortlessly. She hears Parker laughing and playing. She watches them run off to do this or that. And she can't. She cannot do the things she yearns for right now and that is painful to her and heartbreaking for us. She sees her face and knows it looks sick. She sees and feels the scratch marks all over her body and remembers clawing her itchy skin this past week. She sees and feels her distended belly and wants to eat but can only take so many bites before her belly hurts. She touches her face and feels the skin peeling off. She remembers the taste of what she loves but knows it's not the same right now. She is enduring so much and she is starting to feel it. She's starting to realize it. She's starting to understand that this is not right.
God please give us strength. Her recent acknowledgement to all of this has been hard to witness. The Happy Go Lucky little girl oblivious to her own reality is starting to disapppear. Even last week, I noticed it was the first time I could truly see her hesitate and feel upset at walking back in for a hospital admission. She's remembering "this is the place I feel yucky." And twice she told us she wanted to go home. That has rarely happened. She stares at her face and looks at her growing hair and (adorably!!!) asked me if her hair was going to start growing down towards her shoulders 😂! I think she thinks it's going to stand straight up in a spike or something and we smiled and explained to her that yes it would. It was cute and sweet but looking back now I realized it's another example of her comparing herself to what seems normal to her.
Oh god, Brian or I would take all of this from her in a minute. We would carry her load and take it for her in an instant. But we can't. It's not ours to carry. God has given this to her and with that he has gifted her with every amazing gift she has shown us...and more. Please God help us help her as she grows up this year within her own reality. Please give us the wisdom and the strength that's needed. I feel so helpless and weary. She's come so far and we know this. We are so very blessed and grateful to be where we are today and we know this. We still have so many people praying for and caring for our baby girl and we know this too. We know so many things. Please help guide us through what we don't know. There is so much I don't know.
Number one, we are HOME. Came home Friday evening and thanks to Nana (Dottie), who came to care for the children and help out back here at home all week while Charlotte was hospitalized, we've had a weekend full of each other instead of a lot of catch up domestic work. Nana did so much work around our home, there wasn't even one item left to launder and that's saying volumes for our family of 5!! And she showered Taylor and Parker with love and attention which is the most important duty of all. We are so so grateful she was able to be here this week.
Second, I wish I could say Charlotte is feeling good. It's been so long since we've seen her sweet smile. She continues to recover but today she gave us some insight into a heart breaking reality. Charlotte is growing up in this setting and she's becoming much more aware of what is right and wrong, what is normal and what is not. From how she feels to how she looks to what we have to do etc. Today, sitting on the couch snuggled up with Brian and I, she said to us in such a resigned way "Mommy? What's wrong with me?" To say this made my heart break is an understatement. She knows she's not feeling right. She knows she just had a rough 2 weeks. She now really knows this isn't something that happens to all children. She is comparing herself to others. She sees Taylor glittering around effortlessly. She hears Parker laughing and playing. She watches them run off to do this or that. And she can't. She cannot do the things she yearns for right now and that is painful to her and heartbreaking for us. She sees her face and knows it looks sick. She sees and feels the scratch marks all over her body and remembers clawing her itchy skin this past week. She sees and feels her distended belly and wants to eat but can only take so many bites before her belly hurts. She touches her face and feels the skin peeling off. She remembers the taste of what she loves but knows it's not the same right now. She is enduring so much and she is starting to feel it. She's starting to realize it. She's starting to understand that this is not right.
God please give us strength. Her recent acknowledgement to all of this has been hard to witness. The Happy Go Lucky little girl oblivious to her own reality is starting to disapppear. Even last week, I noticed it was the first time I could truly see her hesitate and feel upset at walking back in for a hospital admission. She's remembering "this is the place I feel yucky." And twice she told us she wanted to go home. That has rarely happened. She stares at her face and looks at her growing hair and (adorably!!!) asked me if her hair was going to start growing down towards her shoulders 😂! I think she thinks it's going to stand straight up in a spike or something and we smiled and explained to her that yes it would. It was cute and sweet but looking back now I realized it's another example of her comparing herself to what seems normal to her.
Oh god, Brian or I would take all of this from her in a minute. We would carry her load and take it for her in an instant. But we can't. It's not ours to carry. God has given this to her and with that he has gifted her with every amazing gift she has shown us...and more. Please God help us help her as she grows up this year within her own reality. Please give us the wisdom and the strength that's needed. I feel so helpless and weary. She's come so far and we know this. We are so very blessed and grateful to be where we are today and we know this. We still have so many people praying for and caring for our baby girl and we know this too. We know so many things. Please help guide us through what we don't know. There is so much I don't know.
I know it's hard to see her this way, hurting and not smiling, but this is her reality too. This medication causes a histamine release which causes itching. She's clawed her skin badly all over her little body this week. And her belly is so swollen due to fluid retention/capillary leak syndrome that accompanies this part of the protocol
May 6 is The Rainbow Walk of Heros (more to come about this) and they have an inpatient celebration week for this while we were admitted. She's watching the balloon release out of her window while enjoying ice cream
With Carissa one of our favorite nurses
Need an inspiration? This little boy Lucas beat stage 3 Lymphoma and started this food truck rally using his Make-A-Wish! He goes around the nation giving back to Childrens hospitals❤️
It was like a huge party in the Childrens health center parking lot!
I met Woolley bull of the Durham Bulls
Cutest seeet potato I ever saw!
Painful struggle a very real part of the journey. When you look back on these posts you will read them with pride and sadness but ultimately hope and strength. She is #charlottestrong and you all are #familystr9ng. God bless.
ReplyDelete