Preparing to leave our cozy hospital room is quite overwhelming. Beyond all the things we need to bring from our house, we have to prepare the kids. We haven't told Grace and Andrew yet because I feel like there is an infection looming. I know my girl and she isn't right. There is nothing to go on yet so we will just wait and see. The doctors told me today that an infection will happen at some point. Cora is doing better than 95% of bone marrow transplant patient so we should just celebrate today. If I am right though, our departure will be delayed 7-10 days.
I have been thinking that perhaps Cora is feeling so good that she has realized this isn't our life. Yesterday, her pal went home. Try explaining that to a 19 month old. Her door was decorated, thus is the custom when you have a success on the 8th floor. Cora loved playing with the decorations. Later in the evening, they started tearing the room down for cleaning. When we were out for our evening stroll, Cora noticed. "Ma, Maky? Night nights no?" I said "She is all gone. She went home." Every time we walked by her pals room, Cora said "Maky house" I have to wonder, does Cora know we have another house? Does she remember her bedroom? Or maybe she just feels empty because something is missing but she doesn't know what.
I started today telling Cora we are going home to another house, very soon. I can see she is trying to understand what I am saying. I should have taken pictures.
I just have to share this story about my sweet Grace. We were loaned an amazing book about a young girl with Aplastic Anemia. It is actual photos of her journey. Grace and Andrew had me read it to them over and over. They recognized the walls here at Hopkins and all the things that are the same as Cora's journey. I know they took so much comfort in learning about another family that is like us. Grace asked to take the book to school and shared the book with her class. The next day, she asked to take her stuffed duck with the central line so she could share how we care for Cora's central line. She captured the hearts of her classmates and teacher with her story. She even went so far as to share Cora's facebook page, which she memorized reading over my shoulder, saying to her friends "My Mommy needs your help" (note to self, third graders can read anything!!) This is the first time that Grace has opened up about what is going on with Cora and I am thrilled. Tonight, Grace asked if Cora was ready to go into transition housing. HOW did she know that, I asked Jeff? I now suspect Grace knows more than we realize. Remember, we have never told the children that Andrew's bone marrow was life saving for Cora.
Prayer requests for Cora - pray that I am wrong and there is no infection in the future. I suppose you could pray that if there is going to be an infection, get it over with while we are still in the hospital! Pray her counts continue to climb since they were down slightly today, which is normal. Pray that Grace and Andrew continue to find routine and peace in our upside down life.
I most likely won't post tomorrow or Sunday. We will have Jeff's family here to celebrate Andew's birthday aboard The Fearless, an urban pirate adventure on the waters of the Inner Harbor for true pirates! Thank you Cara for making Andrew's birthday special.
Be CORAgeous!
No comments:
Post a Comment