Holiday Hangovers

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).

A backyard bonfire with s'mores, sparklers and a raccoon

There is not much to say about this. Well, there is actually a lot I could say. I just won't.

I know it will be far more fun for those of you who have peeked at my videos from time to time to live these 2:42 seconds without explanation. The family dynamics are yours to take in.

I'm guessing my family is not much different than your own. Or, maybe a whole lot different. Either way, it's my family. And I love what it feels like to be sitting the backyard I grew up in on a cool summer night, having my sons and my husband fall into the natural rhythm of the life I formerly knew, and now only visit from time to time. I really should visit more.

Going home is never the same once you are grown, but it is wonderfully familiar.



P.S. - and remember to buy carbon offsets or plant trees or cut back on your electricity use for every fire you burn!

"Hey, Can We Talk?" Thanks, WCLT, for Doing Just That

On Thursday, April 22, I was the featured speaker at an all-school assembly for WCLT High School (Woden-Crystal Lake-Titonka). The invitation came after several factors fell into alignment:

1) Students from W-CL-T heard me speak about writing Involuntary Joy during a presentation in an English class at Waldorf College.

2) The students were also taking Miss Sara Blaser's Contemporary Issues class at WCLT High School. When Miss Blaser allowed the class to choose a book to read for discussion, they asked for permission to read Involuntary Joy.

3) The class read the book and used its content for discussions about parenting, motherhood, birth defects, raising children with disabilities, working mothers, and more.

4) Meanwhile, Lisa Pleggenkuhle Grummer, who attended the same high school I did, was regularly substituting at WCLT. She read Involuntary Joy at about the same time as the class, and she invited me to lunch in her home for our own time of sharing. In fact, you may have met her in a previous blog.

5) Lisa suggested that Miss Blaser invite me to come speak to WCLT's Contemporary Issues class or even to students in the Biology and Anatomy classes. Lisa even wondered about the possibility of having an all-school assembly.

6) Principal Ken Kasper and Miss Blaser agreed that there were a lot of topics addressed in the book that could be enlightening for all the students, and so, I accepted their kind invitation to present an all-school assembly.

Today's vlog features outtakes from our time together. This high school (approximately 80 students) is a wonderful piece of living Iowa history, for school consolidations will soon end the days of graduating classes numbering less than 100. In fact, the school boards of Woden-Crystal Lake and Titonka recently voted to explore whole grade sharing with neighboring districts, and in coming years, students will no longer fill the halls of this current facility.

I felt honored to be standing in the WCLT gymnasium on Thursday (brightly decorated for prom) and talking to a group of young men and women who know full well that much of life is about adapting to change. Like our family, they have learned that you simply take what life hands you and keep moving forward.

To a student, each young man or young woman was courteous and attentive as I shared our family's story - my story. Clearly, each one–on either an academic or intensely personal level–understood that preparing for adulthood means anticipating unforeseen circumstances, whether fortunate or unfortunate, but not allowing them to make you afraid. Heck, many who stayed after to talk to me personally let me know that their lives have already been filled with challenges met or in the process of being met. And they are doing a great job of growing up to be exactly who they are meant to be.

I recognize it has become cliche' to say that children are our future. But, truly, I trust the young men and young women that I spoke to on Thursday to create a new way of living in our world. It is why I was comfortable sharing intensely personal stories. Perhaps hearing a bit of our family's experiences can better prepare them for whatever else life brings their way. Part of my hope is that they become more comfortable with a world where "normal" is defined broadly enough to include all the abnormal situations encountered by families living with and caring for persons whose lives fall outside of "the norm" - whatever that is.

And, yes, Gretchen, Jamie and Miss Blaser. I will still post the vlog we made about Contemporary Issues class. What a wonderful conversation! Thanks for making this all happen.

Tickling

Stross was born without the ability to feel his feet. Not his toes, pads, heels, ankles - nothing. That's why I'm fascinated that one of his favorite playful things to do with family members - me, Mark, Skye - is to tickle our feet. We often hang out together in our Great Room, watching TV or YouTube videos while attempting to complete household chores. (You can guess which family members are busy with what.)

Here's the scene: While busy with whatever compels us, we remain basically within reach of each other; and if someone has a bare foot close to Stross, he'll reach out at some point to tickle it. He's consistent. He always approaches the foot with a sneaky gesture and a grin of anticipation. Plus - always - his tickling persists with a smiling, sing-song line of questioning: "Does it tickle? Huh? Are you ticklish?"

We always respond "yes." No matter what, and he always chuckles his incredible, deep-bellied Stross chuckle (a borderline laugh), as we smile. No matter what.

Stross might not know what it feels like to have his feet tickled, but we sure know the delight of having him tickle ours.

And based on his visible joy, I think he enjoys the deepest pleasure.

That tickles me beyond what anyone can know.
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