Maya’s therapist said to me that she feels Maya is finally getting used to coordinating her more grown up body. She has been changing so quickly over the last 9 months and it’s been very hard for her to keep up physically and emotionally. Even though it was hard for her, she had become somewhat accustomed to the patterns and quirks of her young body. But with these intense periods of growth, her strategies for managing her day quickly became unreliable.

Maya was already coping with lots of daily frustration. She had to regularly adjust her posture so she wasn’t falling over, she dealt with chronic pain, and worked through intense anger and anxiety from living with an unpredictable body and side-effects of medication. Once her body began to experience multiple shifts (hormones, emotions, muscles and bones, etc.) it felt like we were all wading through unfamiliar chaos. Maya was more frustrated with her increasingly uncooperative body, she was prone to losing her temper and then upset about it, and she had to integrate several medication changes. We went back and forth between disciplining her and feeling grief and sadness for how hard all of this was for her and how powerless we felt.

Looking back, I see how Maya’s changing needs led to a breakdown and reorganization of our household routines and inner resources. It’s been hard to explain to people close to us, even family, what this felt like and why we were unusually drained and temporarily unavailable. We were hibernating and upgrading the way we relate to each other and support Maya. We were helping Maya with her emotions, sorting through our own, watching her lose skills, rebuild them, monitor and adjust her medications and hormones and ordering new equipment and waiting for parts to adjust others.

Like most transitions we have faced since Maya was born, this was a process that we felt unprepared to manage with any kind of grace. I think many parents can relate to this regardless of whether their children have extra needs, but it’s particularly dramatic when your child has complex medical needs. With the help of an excellent psychologist and several doctors we have found great relief, but it took time. Even as we identified new strategies and resources for supporting Maya, they took time to gain traction.

It hasn’t all been bad, and some parts of Maya’s day have definitely gotten easier. She has better stamina, improved sleep and a broader perspective that makes it easier to ignore little things that used to bother her. It’s also rewarding, and yes, a bit scary too, to see her continue to learn and discover who she is and what the world is about. It’s hard to let go of the little girl we all had grown accustomed to relating to, but it’s time. Over the Thanksgiving holiday Maya wanted to watch videos of herself as a baby—repeatedly. After a while, she looked at me and her dad and said with a little sadness, “I know I’m not a baby anymore, but I will always be your baby, right?”. I couldn’t have said it any better.

-Michele