She's Making It Through the Rain

I often say that working as a singing waiter was the best job I've ever had. In fact, if you are a regular follower of the blog, you have even watched me say it when I vlogged with two of my former co-workers (e.g., Paul and Pam).

They, of course, were my husband Mark's former co-workers, too. Clearly, the best part of my job at Carvers Restaurant was meeting him: my soul mate. But a close second was the opportunity to regularly stand around a grand piano and sing my heart out during two to three dinners shows each week (five to seven during the holidays) plus a weekly Saturday morning rehearsal. Great song selections, talented coworkers, charming atmosphere, delicious food. Music wove this enchanted environment together in a way that continues to evoke peace, belonging and joy, eons after we lived those moments in real time.

This week I've picked up a vibe from Pam's Facebook updates. It's a vibe I recognize: Life isn't comfortable right now. The details of what she is dealing with day to day don't match the feelings associated with life as it should be. Unfortunately, that's the way it is when you live year after year with cancer and cancer treatments (and she's doing it as a single mother of a preteen). It's also the way it is when your life has been shaped by the needs of an adult child with disabilities for close to 20 years, and you realize those years will extend either the duration of your life - or his.

When you are living with chronic health issues, the demands of daily life regularly override how you want to feel. You have to fight to keep yourself above the threshold of what you personally find tolerable. Some days you want to be alone with your struggle. Other days you want people to recognize that you need support. Rare is the day you ask for the support you need. You simply don't want to become another person's tidal wave.

In Involuntary Joy, I attempt to describe the sensations that shape this type of existence using water. I acknowledge times I have felt overwhelmed - swallowed by the latest wave created by a personal financial storm, a poor health storm, a dysfunctional relationship storm, or an employment storm. Sometimes a perfect storm of emotions - created by swirls from each crises - threaten to drag me down.

As I describe in the book, I have learned to employ nostalgia therapy when I recognize that I am standing in torrents of rain. At those times, I whisk myself back to when life felt magical and pregnant with possibilities that I had yet to ponder. For me - and for Mark as well - that time, that place, is Carvers.

Here's what I shared in Involuntary Joy:

Carvers Restaurant had been our Camelot, the magical location of our first meeting and subsequent courtship...No matter how many dined in the restaurant's Chalet Room those glorious evenings, I could always count on one pair of eyes to lock on mine across a finely laden sea of glassware and candlelight...At Carver's I had never seen pain in Mark's eyes. But sitting in the exam room room where we learned of our miscarriage, I could see his pain - feel it even. Had it been possible, I'd have transported us back to the place where our dreams had essentially begun-back to a time when he was the tenor with a huge smile, and I was the flirtatious alto who always managed to be near him ...

I sense that Pam is experiencing a flood that feels overwhelming - things caused by drenching emotional rain that shows no sign of stopping. But those like Pam (and Mark and me) who have stood in such a rain know that it eventually does stop, even if we can't anticipate when or how.

We also know that when it stops, we will find ourselves standing with our shoulders back again, with smiles feeling easy again, and words coming out softer and measured again. And, we won't need to cry tears of release just to breathe deeply anymore.

Essentially, we will find that we have made it through the rain, and - as Barry Manilow helped us recognize - we may even feel respected by the others who have been rained on too and have also made it through.

This is for you, dear Pam. I respect you. I believe in you. I am with you. I hope this bit of nostalgia therapy will help you ride out this storm.

Love, Joy

Stross Goes to Scout Camp: The Complete Series

There are about 800 copies of Involuntary Joy in circulation. Those of you who have read it know that it tells the story of my first five years of motherhood. But it is not only a mommy memoir. It recounts how Mark and I met and how we forged the earliest years of our marriage. It also shares what happened to us individually as we navigated the perfect storm that Stross' birth set in motion, and how we learned to grieve things that we couldn't fully understand we had lost. Perhaps it also shows how we - somehow - have managed to stay together.

My motivation for writing Involuntary Joy was simply to tell a story that life had not yet allowed us to share. I sensed there were countless other families in the same situation - wanting people to know what had happened to our lives because of a child with extraordinary needs. I was simply willing to bare it all. To write things that people sometimes fear to say aloud.

It struck me that I did that again this week by sharing my day-by-day account of what it took for us to get Stross through Boy Scout Camp. These blogs have come the closest to me writing the sequel to Involuntary Joy that I sometimes get asked about. And unlike a book, you get the videos too, so you can see and hear Stross for yourself.

Maybe there will be a real sequel to Involuntary Joy one day. I don't know. I guess I would first have to know that people would really want to read it. But please know this. I am deeply thankful to those of you who traveled our Boy Scout experience with us. You dared to share in our vulnerabilities, and I trust that you - in some way - felt it worth your time.

I believe it is too easy to look, smile, and then either say or think something like: "I don't know how you do it." Or, "God never gives you more than you can handle, does he?" Or, "I admire you. I sure couldn't do what you do." Or even, "Such a blessing. God knew what he was doing when he gave Stross to you."

When I mentally prepare my response, I always - always - resist the urge to rebuff. I know that the person who is sharing the statement intends it as a compliment. I know that. I do. But it always feels like Mark's and my experiences have been lessened in someway - edited to a manageable Hallmark After School Special.

What I hope to accomplish whenever I write about Stross is to invite others to really share the stuff of our lives. It's my way of saying:

• Do you really want to know how I do it?

• Have you ever taken the time to really consider what you would do, the choices you would make, how you would live your life differently because many things you took for granted are no more?

• Do you want to know what I think about your notion of a providential God?

• What is your idea of a blessing? Let's compare notes and allow me to show you how far down the rabbit hole goes.

So, thank you, again, for taking the time to share in our lives this past week as we lived through the range of emotions and experiences of Boy Scout Camp. I am strengthened by your companionship on our family's journey.

When I get the chance to speak to students, educators or medical professionals, I try to explain what it means to live as if life is ready to swirl into a perfect storm. It may seem cliche, but it remains the best metaphor I have for sharing the turmoil of life with a child who has disabilities. Finances, marriage, employment, friends & family, faith - it all regularly gets thrown into turmoil around some issue that places your child in the eye of the storm.

If you know of a family who is also moving through life amid a perfect storm, please share this series with them. It might renew their hope in the future as it has for me. Or it might, simply, let them know they are not alone. And, if you are able to share with them any new insights it has provided you about how they might be moving through life, your words will come as a valued gift. Remember to use these words: "Is that how you might feel too? I guess I haven't known."

I don't know when I'll have such a series to share again, but I will continue to regularly post about our everyday lives. I look forward to "seeing" you whenever you come.


Stross Goes to Scout Camp: Day 1

Stross Goes to Scout Camp: Day 2

Stross Goes to Scout Camp: Day 3

Stross Goes to Scout Camp: Day 4

Stross Goes to Scout Camp: Day 5

Stross Goes to Scout Camp: Day 6
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When Your Baby Has Birth Defects

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For 16 years I have been a guest speaker in the Human Growth & Development class at Waldorf College. Each year, the faculty member assigned to the course invites me to share what it is like to be the mother of a child born with physical and intellectual disabilities.

I always consider the invitation an honor, a privilege and a responsibility.

The class, which occurs every semester as part of the college's education curriculum, is largely comprised of men and women who want to be educators one day. Chances are great that they will encounter a student - an entire family even - whose life has been shaped, in part, by chronic disabilities. If I can, through the recounting of our family's story, introduce them to the emotional, spiritual, financial and physical ramifications of forever living through such a perfect personal storm, then they might be better able to connect with others in a meaningful, productive way.

My goal is to instill a measure of empathy and understanding that can help them meet the demands of their future jobs to the best of their abilities.

Stross accompanied me to the class the first time I spoke at the invitation of Prof. Marcia Trystad. He sat on the lecture table, happily playing with toys and delightfully distracting students with his infectious smile. He was oblivious to the words I shared and what they meant about our life together. Stross continued to accompany me to the class each semester for the next few years, playing off to the side of the room or sitting in the back with Mark.

Now he is taking college classes - one per semester - himself. And he continues to keep track of the days I go to speak to the class. With excitement and eagerness in his voice, he asks, "Are you going to talk about me again?" (For Stross, that is affirmation that he is famous.) "Are you gonna tell them everything?" His questions, and the joyful tone in which he asks them, serve as permission for me to vulnerably share details about his life - actually his and mine together - trusting the audience will respect what is shared.

To Stross, the details of his life make for wonderful storytelling. It is about him, after all. And life - his life - is all good stuff.

I love that about him; I treasure him.

I treasure the life - the story - our family has been given to share.

Involuntary Joy (book website)

This vlog is but a compilation of brief clips, letting you see what such a class period is like. A lot has stayed the same in the past 16 years, but each time is different. I continue to trust it is worth the hour or more of renewed pain that accompanies remembrance.

Please enjoy. Please appreciate. Please respect the story you hear.
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Note: I have spoken to many other audiences, tailoring the message for the audience's needs. The groups have been comprised of educators (of all variations), wellness students, education students, high school students, parents of children with disabilities, friends and family of parents of children with disabilities, church members, and caretakers of persons who have disabilities. I still want a chance to talk to medical professionals - doctors and nurses. They figure as such a dominant part of the stories that belong to persons with disabilities. I would be deeply honored to share what that has meant to us - the good, the not-so-good, the hopeful, the confusing. I'll let you know when that finally happens. I'm counting on the fact that - eventually - it will.
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Metaphor: A Perfect Storm

I've enjoyed several opportunities to speak for AEA training sessions (special education) this past spring--all positive experiences that I find myself continuing to reflect on, mostly because I like the metaphor that shapes my presentation: a perfect storm.

Now I know that many serious writers and other types of communicators consider this metaphor a cliche.' But as far as I'm concerned, if a perfect storm perfectly describes how your child's life can set all aspects of your own in simultaneous, tumultuous motion, then the metaphor demands respect, not dismissal. A perfect storm is a perfect storm for a reason.

I think I was drawn to the concept of a perfect storm, in part, because its turbulent water images compliment the threatening, yet navigable water images I use in the last chapter of Involuntary Joy. That ... and this truth: Calm resides at the center of a storm--even a storm described as perfect.

Here's what I think is cliche': to say faith resides at the center of a storm. After all, most would agree that the role of faith is to help someone move forward, successfully navigating their life's troubled waters. (Yes, I'm gonna stick with the water imagery.) Faith moves us--perhaps even carries us--through wind, rain, thunder, lightening and wave swells. Therefore, it cannot remain quietly at a storm's center if we are to be lifted to a safer place. Faith is too active to be calm. That's why, for me, parking it at the center of turmoil weakens the metaphor of a perfect storm.

However, I can imagine that type of life. A life where faith abides in the middle of turmoil and a man, woman or child feels secure as storms buffet around them. The faith that sustains that type of daily existence is profound. It courts a sense of calm in the midst of strife. And I like the assurance that brand of calm brings--even if I regard it as less appealing than serenity, calm's deeper cousin.

Serenity is the peace that exists in the midst of all that comprises a perfect storm. It's the unshakeable entity that keeps your spirit staid and sure, even as you feel the stings and blows of unfathomable turmoil. It's serenity that says you cannot be engulfed no matter the circumstance.

On a continuum of peacefulness, I value serenity over calmness.

But maybe I'm too caught up in my metaphor. Maybe it's enough to simply hunker down with a faith that invites calmness. A faith that waits with you until normalcy returns.

It's just not how I've experienced life since my oldest child's birth. Stross' arrival--with life-limiting circumstances that permanently altered my own--wasn't calm. And even now his daily existence isn't calm. And it's certainly far from normal.

Yet there's a serenity to it. I know I won't be engulfed.

Stross is my son. Everything he is and everything he has set in motion are fully part of my life. Indeed: Stross' life set my perfect storm raging with no signs of it ever subsiding.

And so, when I'm using the metaphor of a perfect storm to describe how my life feels at times, I don't place faith in the center. Instead faith permeates all the swirling demands of my daily existence. Besides the center of my perfect storm is already filled...with Stross. He's the calm in the middle. And he took his place there without guilt or ill-intention. It just is what it is, and I'm confident that he serenely moves through each of his days fairly oblivious to the turmoil he causes in mine. And I wouldn't have it any other way: Stross in the center, my life's passions and challenges swirling all about, and faith sustaining me as I face another day.

Amen. May it indeed be so.