Nebulous Nature of Life’s Pivotal Moments: Part 2

To read Part 1: Click here.

It was late in the spring of 2000, and I was angry. I didn’t know that I was angry though. Not until Mark uttered these words a second time: “Is that what you want?”

I wasn’t exactly sure how to respond. His repeated question hung for a space of time that allowed me to live through the experiences that had gotten me to that particular moment – the way someone’s life flashes before them when threatened.

Did I feel threatened? Mark had – quite possibly – offered me exactly what I wanted and even needed. I had simply to respond: “yes” or “no.”

His question came after I blasted into the video editing bay where he was working on a project for Waldorf College in order to harangue him. It was a long diatribe. Something about the college (who happened to be his employer and our primary source of income) and how we had tied ourselves to a place that had announced a little more than a year earlier that it faced dire financial circumstances. I also included some fierce sounding accusations about how he spent an exorbitant amount of time at the college and that it didn’t seem to be appreciated. The entire episode was tinged with overtones that said I was tired of being the go-to person on certain matters related to our sons’ care.

Only seven years previous, we had chosen this life arrangement: Mark becoming our family’s primary breadwinner rather than me continuing in that role. Me becoming our children’s primary care provider, and our family living in a city with a population that represented 2 percent of our previous hometown.

Stross was 9 and Skye was 5 at the time. And, evidently, I was tired of being the home-based parent, because these incredibly revealing words tumbled accusingly from my mouth: “You know, I could have been the vice president of communications for some company somewhere by now.”

Silence.

Mark and I looked at one another, me unflinching as I – in private horror – wondered where my statement had come from; he unflinching as he gathered his thoughts and then offered a genuine and animated response that affirmed my anger.

“Is that what you want?” He asked, looking part relieved and part frustrated. “Is it? Because if it is, I’m game. Just say the word, and we are out of here. I’ll go to my office right now, type up a letter of resignation and start packing. You mean more to me than this place. A hell of a lot more. And if you’re not happy, I’m not either. So if it’s time for us to leave so you can do what you need to, let’s do it.”

His words were exactly what I needed to hear, but I couldn’t determine if they were what I wanted to hear. I said nothing. He continued even more pointedly.

“Is that what you want?”

There it was again, but this time my life flashed in a dizzy mess.

I did not want to say “yes” just because I was angry – and I could no longer deny that I was angry. In fact, I was something beyond angry. I was not living the kind of life I wanted to live. I had tried so hard not to become a victim of circumstance after Stross’ birth, but I had finally begun to acknowledge what I had lost. Stross’ dramatic needs now shaped mine. He was born with conditions regarded far outside the realm of normal. My life now reflected his realities. No, they were my realities. Non-normal realities. Whatever that meant.

I also could not say “yes” out of a selfish need to preserve an identity that fit about as well as my pre-pregnancy jeans. But I was scared. Mark knew it. He was scared too. He didn’t want to lose any more of me than what I’d already shelved.

I answered using the word that best matched my mood.

“No.”

“So you don’t want that?” Mark asked. “I know you are right. You could have been a vice president. I won’t hold you back.”

“I said ‘no.’”

“Then what is this about?”

“I don’t know.”

That was more than 10 years ago. And I did not know what it was about then. But I do know now.

Two roads had diverged in the woods that was my life. And looking down one as far as I could, I had not liked what I could not see beneath mounds of nettles and undergrowth. However, I could not take the other road either. Instead, I had hoped it would keep for another day.

Yet way leads to way, just as it did years before that moment when we decided to have a child. And then again when we decided to have Mark become a stay-at-home father, and yet again when we decided to move and switch roles, and still again when we decided to have a second child, and still once more when Stross became gravely ill and we thought about moving after he recovered as a way to manage our debt.

I have never been able to figure out a way back. I can only hope to keep moving toward new diverging paths that pose easier choices. And I learned long ago –simultaneous with Stross’s first breath – that it is futile to wonder where other paths might have led.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I –
I took the one less traveled by,
And that has made all the difference.

Can you hear me sighing? I sure hope so, for if you can, that will make all the difference.

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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Stross Goes to Scout Camp: Day 6 (in a series)

Boy Scout Camp – Day #6
Nighttime, Friday, July 23, 2010

Today I got to see and experience a little bit of what camp was like for Stross and Mark this week. But only a little bit.

I am fully aware that everything that has happened for Stross this week absolutely could not have happened without Mark. My contributions pale in comparison, as do those of the Scout leaders and camp counselors. Sure, we could say it took us all working together. But, really, without Mark, nothing else could have happened as easily or with the focus on what really mattered: making Stross’ dream of attending a real Boy Scout Camp come true.

Mark and Stross were up at 6:20 a.m. and on the road back to camp by 7 a.m. Mark slept soundly last night even after taking two fairly lengthy afternoon naps. He was beyond tired yesterday, but his time of respite had him rejuvenated enough to head out the door in plenty of time for Stross to get to his first session. In fact, those at camp worked with Stross today to help him catch up on what he missed yesterday, so by the time Skye and I arrived at camp, courtesy of a ride from my sister, Jill, Stross had everything punched on his card: a rewarding accomplishment. But, again, it didn’t happen easily and not without a great deal of support for Stross’ brand of independence.

A day is coming – sooner than Mark and I care to admit – when we will need to broaden our circle of support even wider, entrusting others to help us keep making Stross’ dreams come true. Soon we will need to do what all parents do – facilitate launching both of our sons into situations that will allow them to be as independent as possible, according to their respective abilities. Where Stross is concerned, that means expanding our team of respite nurses and supported community living supervisors to also include an organization with resources – personnel and medical – beyond what we can provide for him. And we will have to do it, because we cannot always be here to keep doing these things for him.

I am not sure if those of you who are reading this fully connect with what you have been experiencing. Lurking under all of the anxiety-ridden and problem-solving experiences, and even infused in the joyful and peace-filled moments of accomplishment, there is an undercurrent of mortality. Mark and I faced our deaths this week.

Who will do this for Stross when we are not here? Who will help make his dreams come true?

We don’t have answers to those questions yet. We have ideas. We have some contingency plans. But we don’t have sufficient answers to our life’s most important questions. I wonder if parents with children who have disabilities ever feel that they do. I also wonder if they too hope to outlive their child for their child’s sake.

We are not worried about Skye’s future.

We are deathly afraid about Stross’.

During the span of his two decades of life, we have lived conflicting dynamics. We know how much things cost, and we know the types of things insurers label over-and-above. We know what we want Stross to have according to our definition of quality of life. We know there are people who believe that if you cannot afford healthcare, you should figure out how to live without it – or not live, I guess. We also know there are people who fight extremely hard to fashion laws regarding situations they have never personally faced.

There were many who fought hard against the Americans with Disabilities Act (ADA) 20 years ago for economic and principled reasons, yet we cannot imagine what our son’s life would be like today without the provisions of that law, even as poorly enforced or followed as it sometimes is. Same for the door-opening education legislation passed in the 1970s known as the Individuals with Disabilities Education Act (IDEA) and others like it. People fought against those laws before they were enacted too – again for economic and principled reasons. And, again, I cannot imagine what Stross’ life would have been like without them.

Separate might seem easier for some who live in our shared society, but separate is not equal. And those who cannot navigate life normally need a way in.

Could Stross have gone to a camp for special needs kids this summer? Sure. Would it have been painful for us? Yes, but in fully different ways – and one very significant way: It would not have fulfilled his dream.

For now, for as long as we possibly are able, we can help do that for our son. We will stand by and with Stross for as long as he needs us, even after we launch him into a version of supported independence that we cannot fully fathom today. We will know when the time is right. We will know when the organization or system we’ve put in place is right. If we cannot determine that, we will not have done right by him.

I hope you have time to sit back and enjoy the 9:58 minutes of this Family Night video. Will you be able to see what happened this week through Stross’ eyes? I can, and I love the privilege of seeing life through him. I love how he continues to usher in moment after moment of involuntary joy. It’s a lot of pain. It’s a lot of work. But I cannot imagine what my life would be like today without him.

Thanks for traveling this journey with us.


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Next: Stross Goes to Scout Camp: The Complete Series

Stross Goes to Scout Camp: Day 3 (in a series)

Boy Scout Camp – Day #3
8 a.m., Tuesday, July 20, 2010
Staying awake until 2 a.m. sort of worked. The goal was to force myself to be so weary that I wouldn't worry anymore. Previous to Mark’s call last night, my mind was winding down from a day filled with homework for my masters level classes. My brain was weary. My body was tired. But after Mark’s call, everything in me began planning, organizing, looking for ways to help him out the best I could even from long distance.

Last night, I worked through my initial frustrations via a phone call to a good friend who knows how to listen. She doesn’t attempt to offer answers – or if she does, she apologizes with the disclaimer: “I know I don’t understand.” That is helpful. She also doesn’t get offended when I disagree with something she says about Stross or Mark. For example, when she tried to be encouraging – “You know that Stross is having the time of his life” – I felt comfortable suggesting an adjustment to her perception. It came by way of my response: “Without a doubt, but that doesn’t make it any easier on Mark. In fact, in many ways it makes it harder. That’s why Mark will stay there until the last medical supply is gone, the wheelchair is non-repairable, one of them becomes ill, or he simply cannot lift Stross any more.”

Damn it. That’s what makes Mark, Mark. That’s why Stross has room to dream. But why does it have to be so hard?

I know how it works. I know that Stross’ incessant, optimistic chatter about all things Boy Scouts will both grate on Mark and be the energy he needs to keep on going. It is a paradoxical existence that only those who dare to love Stross can understand. I’m not talking the casual “I love ice cream; I love Stross” kind of love. I’m talking full out agape, I’ll-go-wherever-Stross’-journey-is-heading kind of love. It isn’t for the weak of heart. And this week the journey goes straight through Boy Scout Camp.

Last night I also called my sister, Jill, to talk through plans for her to get me to family night on Friday. I can’t tell if it feels like it’s coming too soon or if it will never get here. For Mark’s sake, I’d love for family night to be tomorrow – tonight even. For my sake – selfishly – I’d love for it to linger in the distance. I need time to reconcile what is happening.

My intentionally timed conversation with Jill (i.e., calling while I was upset) was extra productive because her husband, Greg, is Stross’ Scoutmaster. It is why we decided it was worth it to drive him to another town for the meetings. We have a family member in the system who is able to help advocate too. Trouble is, sometimes we have a way of making things look so easy, that even family isn’t aware when accommodations are needed. So, I poured out my frustrations to Jill, who corresponded with Greg, who vowed to talk to Mark sometime this morning, and then help the camp’s directors better understand what might still need to be done.

Within an hour I got three texts back from her last night– each one providing a bit more breathing room. The first said Greg will address the shower issue today, the second offered the name of a friend who lived near the camp who could play courier should more medical supplies need to be delivered, and the third was an encouragement to:

Take a deep breath. Camp has a learning curve but Greg will help the process. Mark had told him of base [ostomy] issue, but not shower. Boy with CP may appreciate modified shower too.

You know, we get really tired of facilitating others’ learning curves. It has been two decades since I was one of the people who didn’t “get it.” I – Mark too – am getting weary of speaking up to help others understand what we need. It’s a delicate dance where you have to avoid resembling an overprotective parent or an angry, assertive advocate. That is not always easy through the pain.

But I shouldn’t complain too much. When we figured out the need for a Gator and how that would help Mark get Stross quickly around the huge camp while sparing his wheelchair from needless wear and tear, Scout Leader Dan volunteered to drive it over and back for us. He took time off from work to meet Mark at the rental place and fully took care of the Gator’s transportation for us. What a gift. The luxury of the Gator has been worth every dime of the more than $300 we spent. I can already tell that if camp becomes a regular occurrence, we just might need to make a Gator our second car.

There are more texts from Jill already this morning: one saying she reminded Greg to ask Mark if he needed him to run to town for Lactaid, one encouraging me to “hang in there and have faith,” and another stating: “Greg said Stross is having a great time & that other campers very accepting.”

Hmmm ... that last one is likely a matter of perspective that looks far different with a parent’s eyes.

I’m so conflicted about this week. Unlike Mark, I’m getting glimpses of what it’s like to not have Stross in the house. It is quiet. It is … open. My schedule isn’t dictated by the need to be near a bathroom that must be accessed at least every four hours.

But Mark is not getting that experience in negative portions. For all the freedom I’m feeling, he is experiencing two-fold oppression. He is Stross’ go-to guy 24-7 and in conditions that make grown men and women cringe and squirm simply from inconvenience. What Mark is doing to facilitate Stross’ participation means he must overcome inconvenience. It requires intentional ingenuity to overcome sometimes seemingly insurmountable situations. Like the time we – Mark and I – insisted on getting Stross down to a ruin at Mesa Verde National Park on his 13th birthday. Sure there were “accessible” ones on the surface of the mesa. But those aren’t the ones you see in photos. And we were on the vacation of a lifetime, courtesy of Mark’s mom and dad, so we needed the experience to be one that would last Stross’ lifetime.

We picked Spruce Tree House knowing there would be steps to navigate and paths that we technically weren’t advised to go on with a wheelchair because of the rate of incline and narrow passage. But we did it. And Stross got to see and be in a “real” Anasazi cliff dwelling. One that is actually in a cliff. And he had his photo taken with a Native American national park ranger (who was very surprised to see him there). And the ranger gave him a national park souvenir badge for his birthday, May 5th (a holy day for me). So, we did it. We made it happen for him – together: Mark, me, Skye, and even a grandpa and a grandma who likely thought we were crazy but quietly supported us anyway. And we all have wonderful memories because of it.

But Mark is alone with Stross at camp this week. There are others there. But no one who really knows or understands. And I feel so helpless. Very few understand like a parent does. Very few have the capacity to comprehend the selfless existence required. It’s an intense, angry, frustrated version of selflessness that informs you of how selfish you really are. But, damn it, you do it anyway because – in the end – you know that is what matters most. Your ability to facilitate your child’s happiness.


But it truly might be what kills you. Selflessness is stressful business.

That is why – even after keeping my mind busy until 2 a.m. last night – I cried after I crawled into bed. I thought I was done with tears, but I couldn’t stop thinking about Mark. In fact, as I type this in the first hours of a new day, I am crying again. God, I love him. I love them both. But I am loving Mark so much now that it hurts. It hurts to not be there to help be part of what might make things better.

He’s watching his son not be like the other boys.
He’s watching his son not understand like the other boys.
He’s watching the other boys stare at his Stross, perhaps even wondering why he came.
He’s realizing – again – how others cannot fully understand.
He’s feeling what it’s like when others are incapable of comprehending the magnitude of what must happen every single moment in order to make something close to “normal” happen for somebody else.

I know. I get it. But I am not there.

And I also know Mark doesn’t want to call and worry me. I know he wants me to enjoy my week of as-near-normalcy-as-possible. He would hate it that I stayed up until 2 a.m. last night and that I got up at 7:30 a.m. this morning just because I couldn’t make myself stay in bed any longer. I tried. But I kept thinking. So I decided to start typing instead.

I am looking forward to hearing how their day went today. Surely much, much better than yesterday. Greg will be talking to Mark. They will be problem-solving. The weather is fairly decent. Stross is getting to experience Scout camp. Surely the next time I hear from them I’ll learn about new knots tied or fires built or how the canoe trip they are to be on today went. All will be well. Yes?

Stross Goes to Scout Camp: Day 2 (in a series)

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Boy Scout Camp – Morning Day #2
8:30 a.m., Monday, July 19, 2010

Evidently I can sleep 7 hours fairly well. I made myself stay in bed for another hour or two – just because.

I got a morning text from Mark. A response to my question about how things went last night.

Good night. We have owls at our campsite. They began swacking at each other at 3 a.m. Scared me to death. Stross slept straight through. We got up at 6 a.m., had pancakes. We are now learning how to tie knots.

I bet the pancakes are buttermilk. I hope the Lactaid works better at camp than it does at home when Stross sneaks a taste of buttermilk pancakes.

And did you notice? Mark used the term “scared to death” again. That makes me scared a bit too.

My response text: Sounds like scout camp to me.

And what about our scout? Stross, who has watched the entire civil war series Blue and the Gray many times and never missed greeting any military recruiter who visited his high school, had to be positively jubilant about waking up to the camp’s sound of reveille.

Go get, ‘em, Stross!


Boy Scout Camp – Night Day #2
9:30 p.m., Monday, July 19, 2010

There is a brand of grief that grabs you by the throat as if to say: “Not so fast. Your life will never be the same. Have you forgotten?”

I heard it in Mark’s voice tonight when he called at about 8:15 p.m. to … well … to hear my voice mostly, I think. He felt alone, and for the duration of our call, we had each other, and we were in that place again. A place we only get to through and because of Stross.

There was a practical reason for his call from Scout Camp. He thought he had left the extra boxes of Lactaid and extra boxes of ostomy wafers at home. He had. But I had noticed he had left them before they pulled out of the garage. Without Mark knowing, I had grabbed a purple canvas bag and tucked the stray supplies in there along with extra urine collection cups he had left out and two extra bottles of irrigation saline I wanted him to have – just in case.

And now here it was – only the second evening of their week away from home – and he needed the extras. While we were on the phone, he went back to our van and found them in the purple bag where I had put them. Mark must not have thought they were anything for camp since he didn’t remember putting that bag in the car.

On his way to the van, Mark told me he was “trying not to panic.” That if he could just find the extra supplies he needed, he thought that he (actually they – he and Stross) could make it through the rest of the week. But we both understand that the two-day pace they are setting with medical supplies needs to stop. Humidity, rain, water activities, and special dietary needs (lactose intolerance) are not kind to an ostomy. It won’t matter how many extra supplies you have. At some point, you won’t have extra skin, and at some point, you may begin to entertain extra germs. By then, the only way to fix the problem is to eliminate the conditions that are causing the problem. In this case: Boy Scout Camp. And that would break Stross' heart.

(Note: An ostomy is an opening for passage of stool created by affixing the end of the colon in the wall of a person’s abdomen, near his or her waistline. Stross has had one since the day of his birth because he was born with no anal opening. We have kept it rather than having doctors create an anus because it helps manage his incontinence.)

I wish I could be there to help, even if Mark would fight against my brand of helping: avoidance. Unlike Mark, I would not hesitate to explain to Stross why something might not be possible – in the kindest of terms. That’s not always how I do it. My other brand of helping finds me at my best while others might perceive that I am acting at my worst, for I can become a fierce accommodation advocate and insist that everyone make an accommodation happen that they might not believe necessary – or possible. In contrast, Mark’s version of accommodation advocacy finds him single-handedly obliterating all obstacles that might be in the way (including people sometimes by his tone of voice). He either makes something happen or goes down trying. He is a rock; he is an island.

Come to think of it, I guess we are more alike as advocates than I realized. I might go down in the process, too. I will just do it by alienating those who perceive me to be steamrolling over them. But, hey, Stross’ happiness is at stake.

Oh, Mark. Oh, me.

Mark cried on the phone tonight; God, I felt helpless. Other than when he spoke his marriage vows to me, the only times I remember seeing Mark cry have been connected to Stross either directly, like tonight, or indirectly, like when he pushes himself to the edge of physical depression by forcing life to be as “not special” as possible. A person can only obliterate obstacles single-handedly for so long before it wears him down. Then he can cry and begin to take on the world again, reassured I’m still by his side. He can’t get rid of me that easy.

We connected on an intangible level tonight, even long distance, like we have done so many times before – Mark grieving in intense portions, proportionate to the difficult physical and emotional demands of Stross’ life at camp, and me grieving in muted response to Mark’s pain. I knew I needed to be his stalwart support even if it meant I would need to call a friend later and pour out my heart in sad frustration mixed with chronic loneliness.

Loneliness. Mark and I know it well. This existence we live as parents others regard as “special,” as in “special needs.” Only the term “special” is such a misnomer, for this brand of special means “set apart,” yes, but not in any good way. Extraordinary? Yes. That one applies if it means “extra ordinary.” Being Stross’ parent means extra work, extra money, extra physical demands, extra stress, extra pain and extra heartache. That’s a lot of extra ordinary stuff. How extraordinary, huh.

Many people – others who do not intimately know this special existence – like to think that the blessings that come from such a special existence outweigh all the extra … crap. And, when you are at your extra best as an extra special parent, it does. It really does. But that level of spiritual awareness is difficult work. Painful work. It’s a working through with fear and trembling, even anger and despair. And you get to God know in a way that is so intimate, you don’t recognize God the way others present God anymore. When they talk about God, you wonder how they can be talking about the same God.

Divinity – in all its messy, dynamic, peace-filled, miraculousness – is real. But God doesn’t hand out passes that allow you to skip to life’s bonus spaces. Extra-ordinary living requires a conscious choice to be your best version of yourself for all the right reasons. It is a constant self-assessment: I am doing this, but for what?

This week, for Mark, it is so Stross can be a Boy Scout. To feel what it is like to do things that a Boy Scout can do – and if not all the things, as many things as possible. Yes, there are camps – special camps – that you can send special children to. And it is a bit easier for the parents there because everything is so specially different that you swallow the grief of your extra-ordinariness in one big pill rather than over and over and over again in small, excruciating doses.

Hmmmmmm…

I have an idea. I have things to do tonight. I think I can help long-distance. First thing, I have to text Mark before he tries to fall asleep. The pain I heard most strongly had little to do with medical supplies. It had to do with Stross, our boy/man, not being like the other scouts and the other scouts not knowing how to talk to or interact with Stross. Yes, that is a “normal” part of boys being boys. But it isn’t normal in our realm of existence. There is no way to accommodate for that. You cannot steamroll children into interacting with your child. You just have to pray that one or more of them – eventually – gets it.

Mark needs printed words that he can look at more than once – whenever he might need them. He needs a text message. Or maybe I need to send one.

I don’t think the grief will ever go away for good. So sorry u are in the thick of it – being reminded of all that is different about our lives. I hope u can keep seeing it thru Stross. He’s got it going on. I love u so much it hurts. Sleep well. 

Next: Stross Goes to Scout Camp: Day 3  (in a series) 

Emotionally reflecting - Christina Calgaard-Maulsby

It’s been more than a week since I had lunch with Christina Calgaard-Maulsby, Waldorf College class of 2002, and her adorable son, Quentin. I still don’t know what I want to say to adequately express the dynamics of what I think and feel.

The relationships Mark and I forge with former students are as unique as the relationships we had with them during their time in our classrooms. We have found that the students are the ones who set the dynamics, as it should be. Yet life shapes those relationships as well.

A teacher cannot help being affected by watching the way a young man or woman deals with the chronic illness of a parent, the death of a parent or close friend, news that mom and dad are divorcing, news that mom or dad are moving or have lost a job, the sudden awareness that they might be an addict or anorexic or bulimic, the realization they are pregnant and life will never be the same, the realization they are gay and they simply cannot pretend one day more.

Then there are the times I witness life circumstances reflected through their eyes – like the year my Editing class surprised me with a card filled with personal notes of encouragement the day before we were to take Stross for an unplanned surgery. Or the time my PR Skills class joined with Mark’s Electronic Field Production class to give us a gift certificate for a classy date night because they wanted us to take more time for ourselves. Or when yet another year’s Editing class supported a classmate with a teenaged daughter and an elementary-aged daughter through her husband’s untimely death from prostate cancer.

I learn so much about life from those I am privileged to meet in my various classrooms.

But somehow, I think, Christina is in still another category – one of … see, this is where words fail me. Probably because her life has found a way to emotionally pierce mine. While her life choices and life events have not mirrored mine fully, they do reflect emotions of paths I’ve taken.

As a student, Christina drank in the knowledge and experiences I had to offer. She had a natural inclination for the field of public relations and marketing, and after she graduated, she never looked back. Not once. She had chosen her career path well and was enjoying every minute of what it allowed her to do and become.

After working as a college recruiter for a year, she became the marketing coordinator for a bank in southern Minnesota, coordinating all the internal and external marketing efforts for its 11 locations. Then she headed to Florida where she worked for an advertising agency before landing a job as the marketing officer for TIB Bank in Naples. Here she really got a taste of the corporate world, taking on all that comes with a bank buy-out.

Christina led the efforts necessary to merge the bank’s identities, crafting a plan that had customers from the bank that was being purchased able to talk directly to the president new organization if their questions were not adequately answered immediately by the customer service representative she had placed in each branch office. All this occurred the day the signs were changed and the announcement simultaneously made. She proudly told me they only lost two customers in the branch she was in that morning, and those individuals had planned to pull their money for other reasons anyway. In fact, the whole transition went smoothly and much of the success was credited to her. It was likely one of the reasons she was named as one of the 40 under 40 to watch in the local media then. (BTW: She’s only 30 now.) Also, she and her husband, Grant, served as mentors to children in the foster care system through the area’s Footsteps to the Future program. Christina even served on its board.

While all that is wonderful, it’s not so different from what other alumni have accomplished in other ways in the communities where they live and work. What has me connecting most to Christina these days is part of her motherhood story: Quentin was injured in the home of the woman she had chosen as Quentin’s care provider. Over our recent lunch I relived our horror as she shared her own. And while these matters are always horrific, Quentin’s ordeal is especially so. I will not go into the details here, as there is a child abuse court case pending. But I have blogged about it before, and you can find Christina’s story and links to news reports here.

I think the thing that has me most awestruck, is that I am watching Christina navigate a version of life so far removed from normal that the vast majority simply cannot comprehend its layered complexity. And she’s doing it beautifully.

I remember instinctively employing my organizational skills to take on my new version of life checklist by checklist; I see her doing something similar. It is how you merge two banks into one identity; it is how you merge your former way of life with a vastly different one. And note: That last feat is to merge “with” not “into” – there is a difference. For unlike a bank or a company, your identity is forever part of who you are – a child of God seeking to glorify the image of God no matter what you do, where you go or what happens to you.

Christina, you once gave me a book as a thank you for what you had learned from me in the classroom. I look forward to discovering along with you all the new things life has for us – you, Grant and Quentin; and me, Mark, Skye and Stross. I hope you find something of value in the book I have given you.

Blessings to you my, friend. Don’t ever hesitate to call me – ever.

A Wonderful Time was Had by All

As you likely already know, May 5th is a family holiday in our household; this year was no exception. Our resident honoree–Stross Newcom–planned the day (which even began a day early), and then we all focused on what it meant to spend the day honoring him simply by joining in life as he lives it.

This year Mark's parents, David and Carolyn, included a stop for Stross' birthday on their spring travel itinerary, making his 19th birthday even more special for him.

It's always fascinating to view life from Stross' perspective. Well, as much as it is possible to do so. This year I witnessed how he wrestled with variables out of his control. He had planned his birthday down to the last detail, but he couldn't have foreseen this:

• Dropped messages. The emcee at Chanhassen Dinner Theatres evidently didn't get the message it was Stross' birthday, so Stross didn't get to hear his name announced at the beginning of the show - just as he has witnessed it happening so many times for others. And, yes, I made the arrangements when we bought the tickets and called to double check from the hotel, hours before the show. Something happened, and he was bummed.

• Unseasonable weather. He chose the Minnesota Zoo over other things on his list - indoor things like MagicQuest or Underwater Adventures at the Mall of America. He enjoys zoo animals; and therefore, the zoo is a magical (and thankfully a very accessible) place. So off we went into uncommonly cold spring temperatures: 40-degree weather! Stross was undaunted. The rest of us were grateful that large portions of the zoo are indoors or on display – in a comfortable way – outdoors.

• Uncooperative animals. Unlike in his memories of an earlier birthday spent at the Minnesota Zoo (2007), Stross' 2010 birthday had to occur without a dolphin show (as the volunteer explained it "two geriatric and one pregnant dolphin"). After I explained what "geriatric" meant, Stross faced the reality of fashioning a new memory (one that also had to have no bird show, either). He rose to the occasion showing the same amount of annoyance his mother might have. For all the genetic deviations that occurred as he formed in the womb, my ability to complain while pivoting into the future seems to have infused his DNA - at least I recognized and identified with his personal angst.

• Dizzying heights. Finally, Stross traded staying at the zoo until it closed for the prospect of seeing not just one but two IMAX movies. Unfortnately, the ample accessible seating area (with companion seats conveniently beside) were too close and messed with his non-binocular vision during the first movie: Under the Sea. (Stross can only see out of one eye at a time, so 3D up close makes him "dizzy.") Stross, undaunted, took Mark up on his suggestion to be carried up the stairs to sit by his brother and grandparents (and we would move with him) to view the second show about the Hubble telescope: Hubble. So during the second movie, we all sat as a family, Stross didn't feel dizzy, and he independently muscled his way across the row of seats and down the stairs when the show ended. Then, after a full day of navigating the Minnesota Zoo, Stross proved that he has what it takes to keep on keeping on. (Yes, you'll see some of what I'm talking about in the vlog.) What an incredible annual reminder of life's fragile tenacity. What a gift of life.

And, now for his birthday hangover: Stross spent part of today watching the four little movies of his celebration I made for him - still living in birthday magic – and waiting for the mail to arrive in case it brought some straggler birthday cards. (It didn't.) He remains undaunted, however. He is still wearing the bear claw necklace he bought yesterday, and he still has birthday money to spend.

I hope you enjoy the nearly 10 minutes of his nearly two-day celebration that is shared here. Mostly, I hope a little of his birthday magic transfers to you, because it is a powerful elixir.

Here's to the 2010 version of Stross' Birthday.
Here's to another wonderful year.

"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.

Child of Ours - Child of God

Parenthood brings endless moments of letting go. I've learned that most of time, the moments simply happen. Rolling over, sitting up, first tooth, first steps. We recognize them and celebrate them for the miraculous achievements they are.

But so many other moments are lost in the everyday stuff of childhood. Not crying when mom or dad leaves for work, crossing a street independently, a meaningful conversation with a friend, keeping a secret for all the right reasons.

Today we celebrated one of the moments that is easier to recognize: confirmation. Our youngest - our baby - affirmed his baptism. That means he publicly claimed responsibility for his faith. It also means that we – his parents – need to remember to stay out of his way where matters of faith are concerned. I don't think that means we won't continue to share our faith - our beliefs - with him. It simply means that we have been reminded that his faith is his to shape and share – just as mine is mine and Mark's is Mark's. Each relationship is a unique manifestation of God's love in our lives.

Faith is such an intimate thing. What it means to an individual, only God and that individual know. And that is as it should be.

I taught confirmation classes for more than 10 years. One of the refrains I regularly shared with the young men and women in those lessons was this: You cannot give someone faith. Faith is simply there to be recognized and claimed.

As parents, confirmation helps us remember that we have just as much to learn about faith from our children as they do from us. But I think that has always been true. It is just that confirmation provides us with a formal reminder.

Today marked a moment when Skye got to say, "Make no mistake. This one is mine." And God responded, "Back at ya, Kid."

In a world where few are born to riches and few get to live the dreams that they chose, that is a wonderful affirmation. An affirmation of faith in a God who knows you and has called you by name: You, Skye, are my child. You are mine; I am yours, no matter what life brings your way.

Amen. May it indeed be so.
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Hope Does Not Disappoint - New Year's Eve!

The end of a year invites retrospection, while the beginning of a new one brings introspection, doesn't it?

It's nearly impossible to avoid wondering what might happen in a new year: more good than bad, good tempered by unfathomable bad, or an even mix of life. (Note that I, even as an optimist, cannot bring myself to list an option of only good, believing it an impossibility.)

This year I hope for more highs than what occurred 2009 but to have the highs accented by appropriate times of stress - the kind of stress that helps you appreciate life's moments of bliss and motivates you to keep moving forward – because forward is the only acceptable direction to move, isn't it?

Now for a vlog warning: I couldn't resist capturing the raw emotion I feel today; I hope I don't regret sharing it with you.

I continue to believe there is value in sharing the perspective of someone living an altered existence: life as the parent of a child living with disabilities. It's not how I am defined (at least I sure hope not), but it's often the most dominant piece of my life's puzzle. I offer today's perspective as a token of solidarity (if you also live such an existence) or as a petition for understanding (if you've ever wondered what it might feel like). I don't think there's a middle position.

As for what you'll see on screen: My sentences are often incomplete. It's pretty much how my thoughts are these days. They are what they are, just as my life today is what it is.

Happy New Year! May you carry hope that does not disappoint into each day of your 2010.

Hometown Holiday Memories

One of the wonderful parts of parenthood is reliving hometown memories through your children's eyes. Sometimes you get to make new hometown memories while your children are with you.

That's what happened last weekend when we visited the recently built West Union Recreation Center, beautifully decorated for the holiday season. Grandpa and Grandma were along, too. Perhaps we've begun a new tradition on the solid foundation of three generations.

Many blessings to you and yours as you enjoy your family's holiday traditions.



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