I enjoy writing and always have. Keeping a record for Aila and our family here in this blog has seemed perfect and right from early days after her diagnosis. But I've always been aware of my audience and have therefore avoided many topics that I feel may cause upset or uproar. It's in my nature to want to please, after all. I am most comfortable in the universe when I feel like I'm doing right by others, and they are happy. I'm usually willing to work very hard to reach that point.
But admittedly, amidst the scorge of Aila's leukemia, the balance in the universe has shifted for our family. Some things are clearer, others more clouded. Brian has said from the early days that her leukemia has simply accelerated existing family dynamics that were already present, which had possibly been laying dormant in absence of a catalyst. And good god, leukemia has been that catalyst. It would be neither productive nor kind to detail Brian's and my struggles and conflicts with our families of origin here, particularly because we want Aila to choose her own way when she is old enough to read this blog. But suffice it to say that preserving or at least not eviscerating existing family relationships amidst her cancer has been challenging, laborious, and filled with sadness. Admittedly, the Cosgroverstreets since August have required a wide bearth for our emotional reactions and behaviors. For me at least, "hey, your kid has cancer" has been an emotionally devastating pill to swallow. Sometimes I cry, sometimes I scream, sometimes I literally bang my head against the wall. Does this make me crazy? Maybe, but it's the truth. Most of the time, I can get my s**t together and get up, kiss Aila, and move on with my day. But I think about her and our family almost every hour, second guessing my decisions to be at work or be at home, wondering whether she has pooped yet or whether she is eating. Preserving my career (whatever it is), but maybe compromising my own sanity in the process?
And I suppose that I would say, on behalf of both Brian and me, we can no longer be the daughter or son, sister or brother, who anyone knew pre-leukemia. We are forever changed...but maybe this is good!? We are stronger and more steadfast in our integrity. Aila comes first. Our family comes first. And if something or someone gets in the way of that, then I'm pretty sure that my emotions will take over, and I'll yell and scream. But please don't misinterpret raw emotion for premeditated decision-making. Do we want to have brothers and sisters and parents, aunts, uncles and grandfathers in our lives and our children's lives? Of course. A big family is what we dream about, as neither Brian nor I grew up with one. But protecting Aila, putting our family first--that has tasked us with learning how to set some boundaries with our families of origin. Many of these have been unpopular (i.e., "No, please don't come out to visit right now, we are in the very early days of her diagnosis and we barely are staying afloat. Navigating your visit would be too much;" #9 on Grandpa's Ground Rules circa January, "When you may be with Aila’s doctors, topic of conversation is Aila. Not politics, not Boston;" "We feel disrespected because you are routinely showing up an hour or more past when you say you will arrive.").
What's unsettling is that I still feel the urge to swoop in, in all situations, and remedy. Repair and salvage. But then I think about the Cosgroverstreet's limited reserve and resolve, nine months into this race. And I realize that I simply don't have any extra energy or time. If preserving the relationships were genuinely important, then this would be the time for others to reach out to us, ask us how to support, grant us a wide bearth. I know we'd do the same if all were playing in reverse.
So, on that note, I will close by saying that we attended the American Cancer Society's "Courageous Kids" day at Great America last Sunday. I dreamt (unrealistically) of sitting in a circle with other mothers and discussing my abject overwhelm, and (obviously) this did not happen. But, it was a good day. Aila played in the sand with Grandpa. We had a lovely family photo taken. Declan danced to the DJ and later fell asleep in my arms. And on Mother's Day, Grandpa and I were able to reminisce about my parents' trips during my mother's declining Alzheimer's years, to Lake Compounce, an amusement park in our hometown (Bristol). Wendy and Tom loved to sit and watch the Lake Compounce kids playing, singing, and enjoying...and my Dad was able to do the same at Great America on Sunday. Zander, Aila, Brian, and I even went on a flume ride (the finale of the visit), taking at least Aila and I far outside our comfort zone. I daresay that we all had fun.
So extended family, we want to know and love you. We want you to know our kids, and we want to know yours. But for this to happen in any meaningful way, I believe that the dynamics of yore would have to shift substantially, and our family would have to truly come first. Not forever, but for now. Brian and I have so little to give or offer these days. The presiding question would have to be, "What does your family need? What does Aila need? How can we help you?"
Endure, my sweet baby Aila. We derive so much strength from you.
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