Sept. 8, 2015, 2:19 a.m.
Late on September 4th and after 27 days, Aila was released from the hospital and we took her home. We're glad to be home, but I'd say it's even easier here to realize just how much has changed in such a very short period of time. Aila spends almost all day every day resting or sleeping or crying. She begins to cry if we even suggest that she bear weight on her legs. Often, I go to her and realize that her little body has erupted into a deep, unexplained sweat, which I gently wipe from her forehead. She is insatiably ravenous, demanding cheese, pepperoni, sausage, pasta, and pizza all day long. She does let me soothe her at night, which calms me as much as it does her, I think. But otherwise, I barely know this child.
Very early after she was diagnosed, I was irrationally preoccupied with the simple idea that Zander's and Aila's room was not suitable for a tiny cancer patient. Not too long after Aila left our room when she was about a year old, she began sleeping beside Zander on his full-size mattress that lay directly on the floor. They enjoyed this, often building forts and playing games long after they should have fallen asleep. We now think of their laughter, beside each other in bed after lights were out and sleep should have come, and we wish that we could hear it just one more time. I decided to ask some of the folks with whom I work to help us redesign their space, and on Saturday during this past weekend, eleven amazing people in addition to my father, brother, and brother's fiance, helped us create a space for Aila to convalesce and Zander and Declan to rest. Others, who were out of town for the weekend, gave us beautiful, generous, and thoughtful gifts for the kids and the space. They went to Ikea to shop for us, returned to our home to paint and assemble, and even returned on Sunday to finish the assembly of two beautiful beds. It really wasn't until the second bed--Aila's bed--was almost together that I realized why I cared so much about creating a safe space for my babies. A space that was beautiful and comfortable and clean.
On August 8th, Brian and I lost all control of our dreams. Our lives as we knew them simply eviscerated, and since then both cancer and chemotherapy have temporarily stripped our daughter of her gentle identity. As a parent, I dreamt only of being able to keep my children safe from the badness of the world, for at least as long as I was able. My stint as an effective protector was, in the end, not very long. We can't save her. The very best we can do is to fight with her and for her, advocate beyond belief, and love her as she suffers. On Saturday and Sunday, amazing humans created a safe space for Aila. Nishita, Pardis, Kathryn, and Rosie, thank you for muscling through the inevitable attitude and struggle that navigating Ikea always entails. Paige and Chris, loving our boys (Papa C included) and rearranging our garage was profound. Daddy, thank you with all our hearts. Andy and Meghan, thank you for loving your sister, brother-in-law, and neice as much as you do. Alena and Lolly....wow! That room and its chalkwall...Shauna, you brought us a TV and amazing furniture! I cannot even believe it! Melanie, Zander is sleeping next to his pillow right now. Sarah and Jake, thank you for pestering us to get over our shyness, insisting for time to watch Declan and Zander, who have gotten very little attention since Aila got sick. And, last but by no means least, Chelsea, Lolly, Louiza, and Priyanka...we can barely breathe when we think about your kindness, flexibility, openness, and commitment to our family. We are very simply humbled by your humanity.
Fight, beautiful Aila, fight with everything you have. With all this love, I know we can win.
Love, Mom
Comments
vk 9 years, 2 months ago
So good to read about the amazingly loving & willing people you have in your lives. Huge high fives to the renovation team.
Link | ReplyAngela Tana 9 years, 2 months ago
My neighbors daughter had a severe form of childhood leukemia when she was little. After a tough long battle she came through just fine. Now she's married and has a very healthy child of her own. Looking forward to following your blog and to hear the sweet words 'cancer free'. God bless you and your family and thank-you for sharing your journey.
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