His Brother’s Keeper

by Tim on January 15, 2015

Our younger one recently said to me, “When I grow up, J and I will live together and I’ll run errands for him.”

Our younger son is 5. And he has cancer.

And deep down he knows so much responsibility may fall to him someday.

I’m just out of feelings sometimes. He has such a good heart. He loves his brother so much, even when our J-Man often can’t reciprocate in the way he wants him to.

J&E at schoolHe knows his brother ‘is autism’ (his way of saying ‘is autistic’) and is continually deepening his grasp of what that means. We talk to him about it in terms we think he can best understand as a precocious five-year-old. We are honest without being dramatic. We teach him about respect and acceptance.

But none of us really has a clue what the future holds for any of us. We try to imagine it as best we can. We think through all the ramifications of how it will impact our family now and into the next generation. (Or we don’t think about it because we feel too lost.) We each come to our own understanding.

Dale Jr. is having to grow up much too fast. At 5, he’s had to face cancer and a year’s worth of treatments and medical challenges so far, in addition to trying to understand what it means to have an autistic brother. And he’s had to do this all while navigating the newness of kindergarten, the blossoming social life of elementary school, and every new thing that comes with making friends and adjusting to these crazy things called school and life.

We’ve tried to bear as much of it as we can for him, but often we feel helpless. He worries so much. So much is outside his control. He does the best he can, but fear gets hold of him and will not let go. My heart aches for him, and it screams that we have been rendered so powerless to help him.

When he says things like this, I want to stay alive forever. I want him to be free to pursue his own life, just as much as I want our J-Man to have the opportunity to pursue his. The love Dale Jr. expresses in his simple statement is so vast it’s a wonder one heart can hold it all in.

But he’s too young to have to shoulder all this. It’s hard enough to explain autism and the challenges that come with it to any sibling, let alone one so young. It’s a series of talks so many of us parents face at some point, and honestly none of us know quite how to do it.

For now, we keep things simple. We make sure Dale Jr. knows there’s nothing wrong with his brother; they just each see and understand the world differently than the other, with neither way being right or wrong. We make it absolutely clear that any kind of poking fun or laughing at someone because they seem different is never right. We want him to show respect for everyone, and we encourage him at any time to come to us with questions if he doesn’t understand why someone or something is different.

He’s wise and observant far beyond his five years, and we often have trouble keeping up with how fast his mind is growing. But more importantly I think, his heart is growing even more. He makes people feel liked and welcome. No matter what comes next or what he experiences in life, that will always serve him well. We couldn’t be prouder of him.

I just want him to be able to be a kid, too – to not have to worry about so much, to forestall the days in which these concerns will become an unavoidable part of his life. He should be free to play in the dirt, tell fart jokes, and laugh with his friends without carrying the burdens he has to right now.

But life has given us each other and this journey we are on together. We will make our way along this path because we love each other more than anything. We will find a way because that is what we do.

It’s just a father’s wish that his children’s lives should be easier, both for now and a long time to come. When they cannot be, it hurts terribly. But I love them far more than any hurt, and I trust this will always be enough.

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Reflections on My Insomnia

by Tim on December 12, 2014

As I write this, it is 3:30 AM. There’s no obvious reason for me to be awake. Everyone else is asleep and quiet. The only noises are some white noise and the cat purring, and now the soft clicking of this keyboard. As pain goes, I’m actually a bit better than average. A recent medical procedure helped some with my headaches. But yet, here I am, writing this.

I mostly got out of bed because I figured, what’s the point of staying there? I even thought about showering and starting the day really early. I’ll ‘wake up’ in three hours, shower, and get the kids ready for school. I’ll drive them the 20 minutes there, and then I’ll be off to my neuropsychiatry appointment, the one who sees whether two years of chronic pain is rotting my nervous system and driving me crazy.

So why am I, the former world champion of sleeping, awake? I can only guess.

I know I worry, somewhere between a lot and all the time. Between cancer, autism, concussions, and chronic migraines, we each have no small number of challenges in our house. We have a lot of medical debt. I haven’t been able to work enough to get paid in a long while. Week before last we had over ten total doctors’ appointments. This is getting to be a regular, weekly thing for us.

Maybe I’m so mentally and emotionally exhausted that I can’t sleep anymore. I can’t shut down. I can’t find that balanced state of sleep and rest because my body and mind are shot full of holes. Maybe my nervous system really is rotting, and maybe I am going no small amount of crazy.

I just keep trying to tell myself that I am human, I’m emotionally trying to do more than I am capable of sustaining, and that I need to acknowledge that I’m a finite and flawed creature with limits that can’t be exceeded. Our lives are like the speed of light. At least for now, even light has its speed limit.

We all think we can subject our bodies and minds to this intensity day in and day out and never pay for it. We are charging this stress just like monetary debt, except we have to rob one account to pay another just to keep the creditors at bay. That only buys us a little time before the house of cards collapses.

I go to bed at a normal hour. I try to meditate regularly. I don’t do anything that strenuous. I’ve eliminated a lot of outside responsibilities and stressors from my life. Together we’ve worked hard as a married couple and a family to improve our life together. I’ve made a number of positive, personal changes. But still, here I am, awake.

I am trying to notice the sensations of my body and mind as I write. I’m cold because it’s chilly outside and in. I’m hungry because I blew past dinner last night. I’m fidgety because I struggle to be remotely calm or still. I’m worrying about the significant challenges each of the kids are facing right now. I’m not particularly in the Christmas spirit. I know most of the time I would give a piece of my soul for a quiet house and some sleep, and I am pissed at myself that I can’t rest.

In the grand scheme of things, my pain, stress, and responsibilities are less bad than usual. It has been much worse over these past two years than it is right now. Our basic needs are being met; regardless of our debts we are staying afloat pretty well.

So what gives?

I’m going to hazard a guess, and I think it’s one that’s likely true for you, too.

Fear.

After being afraid of everything going on for so long, my body and mind know little else anymore other than the default state of fear. The process of fraying all the nerves takes some time, based on intensity, but once it happens, there you are.

I’m afraid of the future. I’m afraid of all the headache pain coming back even worse than before. I’m afraid of falling back into that terrible pit that I didn’t think I’d ever even begin to climb out of.

I’m afraid of all these challenges that threaten to implode our family. I’m afraid for our little one’s health as he fights cancer. I’m afraid that our J-Man will face so many challenges as he gets older that he will find it too hard to have a job, live somewhat independently, or find someone beyond us whom he loves who can love him back just as much. I’m afraid of so much more that I don’t even want to write down.

So, yeah, I’m afraid.

I take some solace that you and I are somewhere out in the middle of all this together. You have your own fears as I have mine. We each have our limits. We fight this, but even the speed of light has its limits. Light can still do amazing wonders within its own barriers, so perhaps there’s hope for us yet.

I take some solace that it’s worse to not be afraid. To lose fear is to lose your ability to care. You no longer wish to fight for a better life. Fear is a necessary emotion. I just wish it would let up some.

Today likely won’t be my day. That’s been a consistent trend for a while. Putting one foot in front of the other in the presence of fear, doubt, self-judgment, and the enormity of the challenges one faces is one of the bravest acts of all. So I’ll try to be brave as best I can and hope better days are ahead.

It’s easy to think that you are never going to get anywhere. Forward progress can feel glacial. You may think that little of what you do really matters. But it does. It all matters. Even if you are terrified, what you do matters, perhaps even more.

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I Wish I Knew What He Wanted

by Tim on December 10, 2014

We admit it. We get depressed during the holiday season about one thing in particular.

We have no idea what our J-Man wants, and there’s really no way to find out.

He’s still ‘minimally verbal’ at age 9, with approximately the functional verbal speech of a two-year-old. His communication via speech device is only a little better. Mostly he expresses some basic wants about food, drink, and a handful of activities, he will answer certain kinds of questions, and then the rest of the time he scripts.

He can’t tell us much at all about bodily sensations like pain and discomfort, and rarely can he identify his own emotions. Those are just too abstract for him. We are left to guess about those, too.

As he gets older, I feel more and more like he’s a deepening enigma. He seems more and more distant in many ways. He’s approaching the pre-teen years, and we all face many changes soon. I know in my heart that so much is going on inside him – the good, the difficult, the painful, the joyous – but it has so few ways of getting out. What I can figure out about him feels like it barely scratches the surface.

I don’t even have the remotest clue what he might want for Christmas. Not a clue. We guess each year. Some years, out of what we do get him, one – maybe two if we’re really lucky – he accepts and enjoys. We find a winner more or less by educated accident.

Is it really that big of a deal if he doesn’t want to participate in Christmas gifts? Not really. Christmas ultimately has little to do with presents anyway. It’s just for me a symbol for all the things we cannot understand within him yet.

I would love to share my Christmas memories with him, what our old tree ornaments mean to us and why, the special snacks and sweets we make only at Christmas. I would love to tell him stories of my own grandmother, how she loved Christmas, and how she made us all feel special. So many ornaments on our tree came from her house after she died, and decorating our tree is in no small part full of rich memory and grief of those days that exist within our shared family memories.

I would love to know what memories he has now. I would give anything to know what he loves. Is there some form of visual art or music that moves him? Is there something he wants to build, explore, or learn in-depth about because it interests him? Is there something where he’d think, “I love this. Come do this with me Daddy,” and we could share in that experience together?

I don’t wish to change him to do what I want. Let’s be clear about that. I do want to know what he wants in and with his life. I want to know what he dreams about. I want to see at least some of what he sees in the world.

But I can’t. At least not yet. I will still hold my faith that we will be able to share these and more together someday. Until then, I sit with him, I talk to him, I learn everything about him that I can. We think of every way we can give him the opportunities to discover what he loves and who he wants to be. And Christmas, particularly Advent, reminds me that this is really a season of waiting and hoping. That continues to be our path.

Instead we make educated guesses, and for now that will have to do.

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So Many Questions I Want to Ask

by Tim on November 12, 2014

Every time I look at my son, a torrent of questions fill my heart. He can answer questions like what his name is and what his address is, but those are not the questions in my heart. He can answer ‘no’ or ‘yes’ (usually ‘no’ even if he might mean ‘yes’) to some questions about his wants and needs, but those are not the questions in my heart either.

Over the nine years of his life, the list of questions I’ve longed to ask him almost stretch to infinity. I stare into his eyes that rarely look back into mine, and I see multitudes upon multitudes – an entire cosmos I cannot yet reach.

I desperately want to know.

What do you love? What is in your daydreams? When you spend an hour with paper and crayons, what do you feel in your heart? Do you dream about the future? What do you see? When you see this particular girl in your class, does something begin to stir within you? What do you wish you could say to her? How do you feel when we are gone and someone else is home with you?

My dear heart, are you happy?

When you are afraid, what gives you comfort? When the order of things is broken, what does this feel like to you? When you sit and stare, you look so thoughtful. What do you see? As you sleep, what do you dream about? Do you have nightmares? Peaceful dreams? I cannot tell.

When you see me or Mommy or your brother, what do you feel? Do you know how much you are loved and treasured? Do you know how much your whole family and all your teachers care about you and cheer for you?

Do you know how much joy we feel when you overcome a challenge that you’ve worked so hard at? Do you know how proud we are of you? Do you know how much we love you and how proud we are of you no matter what?

When you script words on your talker or out loud, what do they mean to you? When you discover new words and share them with us, do you know how exciting and wonderful this is? We get to witness you discover a new treasure and share it with the world. How many more words and thoughts and dreams are inside you waiting for their time to finally shine?

What do you dream about doing with your life? When you are in pain, what does it feel like inside you? Does the world feel too threatening and scary? How can I walk with you through this and carry some of your burden for you?

I can see frustration in your eyes. When you try so hard but cannot do something, what do you feel? Do you judge yourself? Are you angry? Do you feel hopeless? Determined? Tired? Dejected? Do your body and mind feel out of control? Are you angry that you want to do something but your own body prevents you?

There is so much I do not know. There is so much you cannot yet tell me. I know this is very, very hard. As much as it is for me, it must certainly be many times harder for you. We continue our search for the keys that will help you open the doors to all the language, ideas, thoughts, and dreams inside you.

I know how far you have come. I am so, so very proud of you. And I know so much more is waiting for us to discover. Some things will take years or a lifetime, or maybe they won’t come at all, but to me that’s not the most important thing.

We get to take that journey together, and that’s the answer to every question that matters most to me.

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When I was 23, I did volunteer work talking to people who were near the end of their lives. I was scared of other people’s pain, or at least what I perceived as being pain. I took a situation that I figured had to be painful and assumed the person felt the same. I wanted to fix it because that’s what you’re supposed to do with pain, or so I thought.

I doubt I was all that effective in my volunteer work. Most likely, I wanted to fix other people’s problems to relieve my own fears. And really how do you ‘fix’ things that either don’t need to be fixed or that simply cannot be? The truth is that 23-year-old me would be terrified of the situation my now 41-year-old me lives in, this world with so many questions and endless concerns and so few answers.

Some have said to be grateful for what all these experiences are teaching me. I would much rather our younger son not have cancer. I would rather our older son not struggle so much with the basics of everyday life. I would rather have not had constant migraines for the past two years.

The truth is that I feel powerless to do anything right now. That is one of the worst feelings you can have as a parent. There’s so much waiting – waiting to see what the cancer does next, waiting to find the right dosing for my newer medications.

Every now and then, Dale Jr. just starts sobbing. He is thoughtful and sensitive, much like I was when I was little. He gets too overwhelmed to cope with all his feelings about everything happening to him. Many years ago, I would have looked for ways to divert him from sadness or fix it somehow or tell him everything will turn out fine.

Now I know that all I can do is hold him, say “I know you are sad. I’m right here,” and be present to him in whatever way I can. I cannot deny or fix how any of us feel. This is all hard right now. The best thing we can do is ask whether we can just be OK with that for now.

When I’m at the pediatric oncology clinic, I look at all the children and parents around me. There are rip currents of pain and fear everywhere. All of us feel like we’re at the mercy of forces we can no longer control. But we are, in our own ways, present to each other. No one speaks in empty platitudes. No one denies the truth of what all is going on. We know anything else is to dishonor the paths we each must travel. We just keep moving on as best we can.

flower from the ashesThe inpatient pediatric oncology floor – our home for a total of almost two weeks now – would once have terrified me. To go there is to walk into the soul of fear. I saw parents who had become shells of themselves. Their children hadn’t been home in months. Some would never go home again.

Yet somehow in the heart of that place, grace and kindness still live. Like flowers that grow out of volcanic ash, each parent we met extended their heart to us. Their children smiled to our son and he back at them.

To varying degrees, we have all been stripped back to our core. We are given the unfiltered truth of what it means to be human. We are helpless and afraid. We are strong and our love unshaken. We fight to whatever end.

We show compassion and kindness because others have showed us the same. We are surrounded by love and support from all sides. We are exhausted and unraveling. We just try to get through the day. We appreciate what we do have. We marvel at how our kids bring out the best in others. We hold on to all that is good.

I never thought I would become that guy. That person I would have felt sorry for. That person who has no idea anymore how the supposedly normal lives of others works. That person who others look at with no idea what to say. That person whose child gets special attention because he’s fighting for his future. That person whose family others pray and cry for because they don’t believe this could all happen to someone. But that is who I am now.

Autism has become one of the easier things in our lives lately. We joke that it’s about tenth on our list of things to be concerned about. Our J-Man is doing pretty well and going through his daily routines about the same as he always has. We never know what he has picked up on, how much he understands about everything that’s happening to us. That mystery remains inscrutable for the time being. He finds solace in the routines of daily life, and he simply is. He almost seems the most oriented of our chaotic family.

But now we just want to survive all this intact and have our life together continue on, hopefully stronger and brighter than before. I have become someone I barely know. Physically I have deteriorated. Mentally and emotionally I am often someone I don’t recognize. Anxiety, chronic pain, fear, guilt, strain, powerlessness, and a laundry list of other emotions take their toll. Some of that is my own doing. In the midst of crisis, we still have it in our power to break things much more than they already are.

We will never be quite the same even when Dale Jr. finally goes into remission and, God willing, my migraines go away. Too much has happened. We will just find a new normal and come to some kind of peace with it.

We’re here together, and that’s what matters most. We have communities of support who lift us up when we can’t do that for ourselves. We’re getting by. It could be much worse. But it is hard.

Sometimes that’s just how life is for all of us. It’s OK to say it out loud. It’s OK to say things are hard. It’s OK to say you feel worried, anxious, or terrified. It’s OK to ask for help. You’re allowed to do all this just as much as we are. We’re all in our own ways in this big boat together.

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