Seamus was asking me about why boys are flat chested and women have breasts. He asked if Eve had breasts and I told him she was too young and that older girls developed them. He said that when Eve gets older she won't need her wheelchair and will walk. I told him that wasn't going to happen. I told him that Eve will never walk and that she will probably not get much older before she dies. He burst into tears and said he didn't want her to die. He was super emotional and just sobbed. He walked over to her and hugged her. I started crying, too. We talked about her disease and I told him that it will end her pain and that she won't suffer anymore. It took him some time to calm down, but then like a typical three year old, he shifted focus to some music and started dancing.
I met with both the hospice nurse and a reverend from hospice yesterday. The reverend gave me a book for kids about losing a loved one. We've never talked about Eve's terminal illness with Seamus, but have never hid it from him. He's always accepted Eve for how she is. Looks like it's clearly time to read the book with him. Who knows how long we have left with Eve. Maybe a year. Maybe less. The nurse mentioned there's been a lot of progression in the last year. I've noticed her wanting to lay down more and having more irregular breathing (2 deep breaths and 8 second pauses). As sad as this experience with Seamus was, it was so wonderful to see how much he loves Eve.
5 comments:
This is so precious. What a hard road we are walking with our girls. At times we feel like Celia will remain stable and then she takes another step and we realize she is not. Would love to know the title of the book to read with my girls too.
When Dinosaurs Die: A Giude to Understanding Death
By Laurie Krasny Brown and Marc Brown
It is a very hard road, Cristy. Xoxo
Thank you so much. Your family is always in our prayers. Your blog was the first thing I found when Celia was diagnosed. Thank you for sharing openly. We have had many discussions regarding Celia's future after reading your decisions for Eve. Hard conversations but so important. Thank you.
Thanks. :) I just edited the post and put a link for the book in it. I always wonder who reads about us. It helps me to think about how her situation may be helping others. I wonder which classmates will become therapists or physicians or surgeons because of her.
Tears reading this too! I adore your family, and am constantly amazed by the strength you all demonstrate. Hugs, love, and see you soon. <3
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