Note: This column first appeared in the winter/spring issue of the newsletter for the Spina Bifida Association of Iowa.
The holidays are over but feelings of frustration may linger. For all the fun that occurs, equal – or even disproportionate – portions of disappointment may have come with the celebrating. If you feel this way, you may have a holiday hangover.
One of the often unspoken realities about living with disabilities (or caring for someone who is) relates to the discomfort of celebrating a holiday in a home that is ill equipped for a person’s needs. Therefore, a holiday hangover can mean exhaustion – the kind that comes from sidestepping dietary needs; lifting and maneuvering in and out of inaccessible homes; wrestling into – and inside – bathrooms that are too small for mobility and medical aids; and endlessly moving chairs, coffee tables, and other types of furniture so a loved one can more easily move through the hosts’ home.
Often the hosts do not know how such an experience negatively impacts the quality of time together. Likewise, the ones most directly impacted do not know the best way to tell them.
Our family regularly suffers in silence, believing it is simply easier to go, make do, and then head home. It’s our attempt to avoid a holiday hangover, I guess. Yet it is difficult to avoid being angry or to avoid expressing anger in unintentional ways. Sometimes we enter awkward conversations about uncomfortable subjects – for instance, what it feels like to always be the people who have to figure things out. However, it never seems easy.
Therefore, a holiday hangover has emotional implications too. For instance, seeing children without special needs and being reminder of how different life has become. Same for conversations with family and friends about school topics, medical issues or everyday activities. Celebrations that involve family gatherings can be, well, complicated.
So what, if anything, is there to do? I suggest being as honest as possible about your feelings and practical needs with those you celebrate with – if you can. You might also volunteer to host the celebrations, explaining that any hassles associated with hosting will help overcome the discomfort related to circumstances beyond your control. Or, you can simply ask family members to be patient with you. Let them know their patience is a gift. In fact, patience is probably the best remedy for a family’s holiday hangover – patience with others and with ourselves.
Here’s to a wonderful new year for you and your family. May your 2011 holiday hangovers be few and your happy holiday memories plentiful.
Joy M. Newcom, in addition to being Stross’ mom, is the author of Involuntary Joy (www.involuntaryjoy.com). In this memoir, she chronicles her first five years as a mother, revealing the often unspoken thoughts and feelings that are familiar to parents and guardians of children with disabilities. She continues to share her personal story via Involuntary Joy’s Facebook page and in her vlog-blog (injoyblog.blogspot.com).