Photo credit: Kelly Gaines

The rare times I picture the grief I feel about Maya having cerebral palsy I envision it in a cocoon-like incubator with layers of gratitude and hope spun around it. These layers help me cope with her condition and cushion me from falling into the raw grief and sadness that hides further within. Although much healing has taken place, I still am aware of the grief inside me. It emerges in unexpected ways and at surprising times. Its protective layers occasionally become increasingly vulnerable, falling away, exposing the raw and painful core. Something as simple and festive as a birthday party, family gathering, travel, or even a vacation pushes us beyond the comfort of our established routines and circumstances and leaves me facing the harsh reality of Maya’s differences. I enter a space where I am forced to look again and again at how she doesn’t fit into the world. I scramble to gather my alternating cloaks of gratitude and hope but sometimes they begin to fall through my fingers. Raising a child with special needs requires incredible flexibility, creativity and forethought. Over time these qualities have become second nature to me. But within each of us is a threshold, a place where our resilience is challenged.

Every inaccessible bathroom, puzzled stare, required explanation, alternate route, pulls and tugs at my emotional cloak a little each time. Occasionally these experiences gain a stronger hold, stripping my grief of its protective layers. Strangely enough I realized I was feeling quite down after returning from a week of travel. Certainly the trip had its moments and days of fun and laughter. But there was another side to the experience as well, and that was having to constantly navigate the unexpected, inconvenient, and physically challenging aspects of the trip. This isn’t unfamiliar territory to us when we travel, but it felt more intense this time. Perhaps it was the number of places we tried to visit, the time commitments we had, the unusual number of problems that arose, or our stress of observing Maya for seizures. Whatever it was my mental and physical tiredness gave way to grief last night. As I walked into my room to get ready for bed, Maya’s dad asked me what was wrong. I could barely speak. The only expressions that came easily were tears.

After a few moments I told him how upsetting our recent travel experience was for me. Despite the many wonderful events, including my brother-in-law’s wedding and finding several accessible places and incredibly kind and supportive people, this trip still starkly highlighted Maya’s challenges and discomfort. I didn’t realize the degree to which I am unconsciously affected when I leave the safety and comfort of the routine we have at home. Thinking back I realize this kind of grief seems to emerge every time we go away. I finally had some insight into it this time and perhaps that was because my feelings were more pronounced.

We love adventure, travel, and new experiences. Maya loves them too. I am always committed to helping her experience as much as possible as long as she is up for trying it. It brings me great joy. I just didn’t realize that along with the joy, exhilaration, and gratitude that accompanies our new experiences, occasionally my grief becomes exposed as well.