A new personal goal

I hate to say this, but Brian and I are starting to get the feeling this is going to be much harder then we could have anticipated. And that is with everything so far going as expected and the doctors not at all surprised by how sick our little girl is quickly becoming. She currently has a high fever along with pain in mouth, stomach and bottom area, bone pain, nausea, diarrhea, and some blood in her vomit from mucositis. I worried about Charlotte being in pain but didn't realize there would be something that would be even harder to watch. That something is her spark, her light being slowly dimmed. What I didn't consider was this being traumatic for her and the psychological and emotional difficulties she could have. And besides the physical pain, she is also beginning to suffer some emotional and psychological distress. This is almost harder to watch because there is no medicine that can help her through that. That is Brian and I's job. And we are trying to get it right.

Charlotte has started to shut down a little and slip away into herself  due to her pain and fears. I'm not sure she feels she is being heard when she doesn't want something to happen because most of the time it isn't a choice. So we try to help give her little choices in the big matters. For instance, she has required mouth care: several different solutions she must put into her mouth using a sponge brush and 4 times a day. Her mouth is becoming sore from mucositis. This is now painful and the solutions sting her sores. Most 2 (almost 3) years olds would keep their mouth closed and turn away and refuse to cooperate. Charlotte doesn't. She complies through her tears because she knows she has to do this. It isn't optional. But we let her choose the order of the 3 solutions and give her a window when to tell us to begin this. Today the doctor called her stoic and he is right. She can enduree discomfort and sometimes pain without letting us know her true feelings. Maybe for certain procedures she's afraid to tell us her true discomfort because she thinks "what will they do to me now?" This kills me. She's not quite 3. She shouldn't have to suck up any feelings or emotions! She shouldn't have to pretend to be brave. Ever. But we have seen her do this. God, please let these characteristics she is building at this time help her do your work. Please let them be meaningful to what she's meant to do with her life. Although none of this could be a memory for her, let any lasting imprint only be character building in the good sense.

Watching her begin to go into her shell is incredibly difficult. She hurts so the act of talking is more painful and tiring and she doesn't want to even be held much. Last couple days she hasn't interacted or played much either. Today we did cuddle, she watched me color and helped pick out colors while in her little fetal position, read books, watched Paw Patrol and I heard her laugh at loud at Marshall. I did something silly and she gave me a behind the paci grin. And I smiled ear to ear when she snapped at a nurse who called her "darling" yelling "I'm NOT DARLING! I'm CHAR-CHAR!" (A nickname daddy gave her and she loves). Terms of endearment offend her lol. It's Charlotte or Char-Char or nothing. Don't go calling this little one honey, sweetie, cupcake, or darlin'. The nurse laughed and laughed. Charlotte did not😆

However, her pain is being controlled by medication. They began PCN (patient controlled narcotics) Saturday. This not quite 3 year old is pushing a button to administer HER OWN PAIN MEDICATION. This blew our mind! Brian and I are not allowed to push the button. Only a nurse or Charlotte can. And she's doing it! If the steady drip of fentanyl she is getting isn't enough and she has break through pain, she says "me push my button" and she reaches over to the cord attached to the narcotic and she gives herself an extra dose. There are controls so she cannot overdose and give her self too much in a given time period, but unreal. She's amazing. Absolutely amazing.

Finally, I had a low moment yesterday. I spent a wonderful day with my Taylor and Parker while Brian spent the day here with Charlotte. When I returned to switch off with him, I came back to a Charlotte who barely spoke 2 words to me. Didn't want me to hold or cuddle her. And hardly made eye contact. She loves her daddy and didn't want him to go, but this was not the reason. After a huge private cry out after she fell asleep and a good talk with my husband, I decided to set a new goal. Going forward, my priorities will be her emotional and psychological needs first and foremost. I will be her safe harbor. She will know Brian and I are sitting on her side of this table. We are on team Charlotte. If the lines between staff duties and parental duties here get blurred, I will step back and be sure she knows I'm only here to comfort and care for her. She wants us to do certain things (mouth care, diaper changes, be the one to give her medications by mouth etc) but when (not if) those things become painful and traumatic, I will step back and hand the reins over to the staff here so that she know her parents are not them. We are here for her. They will gladly be the bad guys. She needs us as her safe harbor. We will help keep her light shining. We want to take away the pain and fears but since we can't, we will help her feel Gods arms. Because he is here with us. I feel him with every fiber of my being. He lets me know this in subtle ways....one example....last night. After my cry out because I couldn't be the comfort to my daughter I wanted to be and needed to be, she fell asleep and I cried and cried. Moments later, she woke in pain. She wanted me to hold her hand as she pushed her button. Then she turned her head and looked at me and said in her sweet yet raw hoarse voice "cuddle me?" I smiled and thanked God. She needed that. But I think I needed it more.