Two weeks have passed since Maya's surgery and it's still difficult to process everything that has happened in such a short time. We have spent the last two weeks mostly just the four of us, with a few visits from family and friends. We have enjoyed our time together playing, decorating for Christmas and breaking out the Christmas videos. Falling back into our routine has helped to bring a sense of normalcy to our lives.
Many people have been asking how Maya is adapting to her new situation. She continues to amaze us with her strength and understanding of the whole situation. Since the beginning of this journey, Robbie and I have struggled with what to tell Maya and how. We want to keep her in the "know" without scaring her. Our approach has been to discuss what is happening in the present moment as this is what is concrete for her and not go into what is still abstract.
Over the past two weeks, Maya is the one who has brought up the subject of her eye. Each time it has been during some random moment like when we're reading a book, or in the morning when she climbs into bed with us. Sometimes it has been a comment and other times a question, to which we have answered honestly:
1-Maya: "I wish I could have my old eye back."
Us: "We do too, but your eye had a boo boo in it that could make you very sick. We're sad too, but we had to make that decision so you can be safe and healthy."
2-Maya: "Mommy, why can't I see out of my new eye?"
Me: "The doctor had to take your eye because of the boo boo. You'll see in new ways, just not in the way you used to. Your left eye will learn to see really, really well and will do the job of both eyes."
Maya: "I love you Mommy."
Me: "I love you too, Maya."
After both these conversations, Maya went back to what she was doing and didn't seem phased in the least. When she is ready, she asks questions and her understanding runs deeper than we could ever imagine. We are already talking about what her new eye will be like and what the process will be to make her new eye. She, like us, is making her peace with her new situation.
As I mentioned in a previous note, play has been an important part of her healing and a great opportunity to explain her new situation. Tonight, we were playing with her toy horse and she was the Mommy and I was the doctor. She came to me and explained that her horsie had a boo boo in his eye and I needed to take the eye out. So I did as I was told and then Maya said it was time for her horsie to have a new eye. I jumped on the opportunity to go through the process she will soon experience with the ocularist. We made a pretent mold of her eye and then I pretended to be the artist who painted the eye so it looked just like horsie's other eye. Next thing I knew, Maya became the doctor and I was the Mommy. She removed horsie's eye, made a pretend mold, painted a new eye and put it in. Pure magic.
As much as Robbie and I have struggled with how much to tell Maya, she has led the way for us. She has let us know what she needed to know and we have been honest. At the beginning of this journey, we told Maya that there would be some difficult decisions to make and we asked her if she trusted us to make those difficult decisions for her. She said yes every time and we promised that every decision would be made in her best interest and that we would be there with her every step of the way. The past two weeks have shown us that this trust goes both ways: she trusts us and feels comfortable coming to us and we trust her to let us know what she needs.
This Wednesday at 10:45, please think of us. We are going to Sainte-Justine for a check-up of her eye and we hope to have the results of the lombar puncture, the bone marrow puncture as well as the pathology results of her eye. These results will determine whether or not she will need chemotherapy. We hope to come home with good news.
Thank you again for all of your thoughts, prayers and candles. So much love and light has spread around the world in honour of Maya and for that we thank you wholeheartedly.
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