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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Pulling the IV Pole

by Tim on October 16, 2014

During Dale Jr’s most recent chemo treatment, he ended up back in the hospital. He got so dehydrated from vomiting after the second of the four days of infusions that he had to be admitted. So almost six months to the day after we left that inpatient pediatric oncology unit hoping to never have to go back, there we were again for another four-day stay.

He remembers everything about the last two times we were there, particularly the location of all the play areas. He was so weak the first couple of days that he could barely move, but he wanted so desperately to go up to the fancy playroom two floors above the oncology unit.

There was no way he could walk the distance. He couldn’t even walk much past the door of his room. So I found a wagon and loaded him in with his stuffed bird doll and a blanket. You could tell he felt awful, but he wanted to go so much that the medical staff suggested we at least try. I took the wagon handle in my left hand and the IV pole in my right, and I dragged it all behind me toward the elevators.

About halfway there, I was almost struck down with a vision of what I had seen in this place six months before.

Outside his room when he was first diagnosed in March, I saw a dad pulling a little girl in a wagon. She was wrapped in blankets, too weak to move. He dragged the wagon handle in his left hand, the IV pole in his right. They made laps of the oncology unit. As I watched them, I had this haunting feeling that what I was seeing was a prophecy of our future. I never imagined that it would literally come true.

I became that dad I wrote about. I wanted to fall to my knees, but I knew I couldn’t. We have to keep a brave front for him.

We made it to the floor the playroom is on even with my awkward ‘driving’ skills. Since the children’s hospital is located on a major college campus, a lot of college students volunteer there. I was rescued by two of them. One offered to push the IV pole the remaining few hundred feet to the play area while I pulled the wagon.

If you ever wonder what you can do for someone, carry a little piece of their burden for a bit by doing something practical. It doesn’t need to be much or for long. Just pulling the IV pole along for a couple of minutes matters.

This was the big playroom for the entire inpatient part of the children’s hospital. Children with cancer, severe burns, injuries from accidents or traumas, and much more all mingle together with volunteers. It’s like the center of the unfairness universe. But we make the best of it. The kids with cancer tend to get the most sympathetic looks and quiet words. Everyone here knows some of them won’t survive.

The kids play, and for a little while we forget what all is going on. He lasted about fifteen minutes until I had to take him back to his room. He slept for three hours. It was all heartbreaking. We were living on the other side of the prophecy. If I could have rammed that IV pole up cancer’s ass, I would have.

While he slept and I drank bad coffee from the parents’ pantry and ate from a stack of individual cups of chocolate ice cream, I tried to think about anything to be grateful about in all this. It turned out to be not all that hard really.

It’s the people who will walk to the edges of worlds to care for our children. These nurses and doctors walk toward the center of other people’s hell and do their best to help, to heal, to give hope.

The families find a bit of comfort in each other even if we’re often too busy attending to our own children to talk much. We are like strangers huddled under a shelter in a terrible storm.

We have all been offered platitudes by well-meaning people to explain why we are here in this place with our children. Those people will never really understand what it means to be here. They just need to make sense of it for themselves and maybe for us, too, in an attempt to avoid the feelings of terror we feel.

But what kind of divine plan can have children screaming as the chemicals burn a hole in their chests? What kind of plan can have parents’ hearts lying shattered on the hospital floors? What kind of plan decides which little ones live and which die?

The solace I find is that people care for us and help us, for whatever reason. Maybe it’s because of their faith. Maybe it’s because it’s simply who they are. Maybe it’s a combination of these and so much more. I simply don’t know.

The kids in the oncology clinic try so hard to carry the banner of bravery left for them by all the courageous souls with cancer who went before them. They, too, do not know how to quit. They inspire us. They teach us what is most sacred in life. They teach us that we don’t have time for all the petty things in life. Our time here is just too precious.

And somehow all this care and courage turns everything into a certain ragged grace that comes out in between the cracks of chaos and hope. It calls us on to follow the footsteps of those who have been out here before us. We are not alone, even if few will ever take the path we are on.

Is any of this fair? It almost doesn’t matter whether it is or not. We can curse the challenges and heartaches in our lives, but it does little to change them. Lately, I feel a bit less angry. I’m not sure why. I guess I realized it wasn’t making any difference except to harm me and others.

We are loved. We are pitied. We are embraced. We are sometimes just on our own. We try our best. We win some days and lose others. We hope in a good future because the alternative is too terrible.

Perhaps people see us as a symbol of how fragile life can be. Perhaps those who live fairly straightforward lives see ours as a rollercoaster precariously balanced on the edges of gravity. Some days are very hard. Some are pretty average. Others are extraordinarily amazing beyond words. But it’s quite obvious that the lives of others are not much at all like our own.

It’s hard to see this as a journey anymore. It’s neither a marathon nor a sprint. We live outside of time. It’s just today now.

We are exhausted, constantly worried about finances, short with each other, and desperately hoping for the days beyond all these challenges. We joke that autism is about eleventh on our list of things to be anxious about right now. We do know that ourselves of two years ago wouldn’t recognize who we have become.

We take heart in how much both our kids inspire others. They have gone through more challenges than most children end up facing their entire lives. So many root for them and want to help. They’ve pulled the IV pole for us whenever they could. I could never put into words what all this means to us.

My hope is that you find people like this in your own lives. We all need them. We aren’t meant to do this alone.

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For the last eight years, we’ve worked to help our J-Man learn to say the ‘b’ and ‘p’ sounds. For most of those years, it’s sounded like this mixture of a glottal stop and a fake swallow combined, his lips and teeth open. In other words, about as opposite from an actual ‘b’ or ‘p’ sound as you can get.

A procession of speech therapists have tried a seemingly endless encyclopedia of techniques to help him with this. As he gained more and more verbal sounds, the sounds he used as his own approximations for ‘b’ and ‘p’ remained steadfast. He still has approximately the verbal speech of a two or three-year-old (he just turned nine), but the clarity of the speech he does have has improved in leaps and bounds in recent months.

It would be one thing if it were just us talking to him. We know what he means, and in that regard his glottal approximations haven’t made that much functional difference. We know, however, as he gets older and learns to express himself more and more, and the more clarity we help him achieve, the more he will be able to make his voice heard by others. Obviously when he gets older and grows toward adulthood, the more vital it is for him to be at least somewhat understood in situations anywhere from ordering lunch to advocating for himself to others.

So we kept trying. We tried every form of modeling the sound for him, but to no avail. We focused on getting him to close his lips – an essential component of bilabial sounds like ‘b’ and ‘p’ – but he would just touch his lips and then go right back to forming the sounds the way he always had.

Many years and approaches later, we noticed that the throaty, glottal noise was moving slowly forward in his mouth. We wondered if maybe he was ready and preparing himself to make a change. His speech therapist had the brilliant idea to substitute ‘b’ or ‘p’ for ‘m’ to get him to close his lips as a transitional step toward ‘b’ and ‘p’ later. So, ‘blue’ became ‘mlue’ or ‘muhlue’, ‘mink’ for ‘pink’, and so on. This finally seemed to click for him in a way nothing else had before. It got that frontal, similar, bilabial sound going and moved the sound forward in his mouth. We were getting there. We could feel it.

Then on occasion he would successfully make a ‘b’ or ‘p’ sound! It seemed rather random, but in reality it was primarily when he wasn’t thinking about it. Instead of overthinking it or remaining so invested in patterns that had built up over the years, it just popped out there.

BeautyWe thought about what a Herculean step this was for him after almost eight years, how much he stuck with it and did the work and the practice. I can’t imagine something being so hard, but yet him working at it for so long. It made us even that much prouder of him.

I recently had to go back to the Head Pain clinic in Michigan, this time by myself. Mary frantically was texting me that he was repeatedly making those elusive ‘b’ and ‘p’ sounds in songs and scripts at home. I asked her to make a video clip and send it to me. She did, and I sat on my hospital bed and wept, tears of joy and pride.

Tears that he had climbed to the top of this incredible mountain, and tears that I had been 700 miles away when he did. I had missed that moment. I am the primary stay-at-home parent. I have been here for just about every first of everything. A big part of me hurt. I know how hard he worked, and the time, talent, and energy a small army of people had put into helping his speech progress over the years.

I felt sorry for myself for a little while. I sobbed as I watched the video over and over again. Then I became grateful that moments like this are part of my life. I get to bear witness to my two brave, determined sons who conquer challenges great and small every day. They do not quit, ever. I am grateful that they make me a better father and a better man. Lord knows I need both of those things right now.

I am grateful for the people who work on their behalf to make these moments possible. These moments don’t appear out of thin air. They are the culmination of hundreds and thousands of hours of work by numerous saints who give their lives so that our children can have that chance to become the fullest possible expressions of themselves.

We start on the next journey now. There will always be a next journey. But now he can say words like beauty, bright, brilliant, believe, beloved, best, blessing, brilliance, bravery, possibility, potential, powerful, promise, peace, perseverance, progress, and proud.

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The Screams

by Tim on August 26, 2014

In the J-Man’s classroom when a child is upset or overwhelmed, they may begin to scream. Perhaps they scream in frustration, anger, terror, or confusion. Perhaps they have no words except to scream. It may come out as a shriek, a brief and shrill alarm, a cacophonous string of high notes, or a bloodcurdling and unending scream.

When you’re in the classroom enough, you learn to know whose screams belong to whom. You learn from pitch, cadence, and duration what they likely mean. You learn when to be alarmed and when to be a calm but firm presence.

You learn how to pick your own child’s screams out of a sea of hundreds of voices and background noises. In a store, it’s like active sonar pinging you back toward them.

Some screaming you get less used to, assuming you do at all. The screams of terror at the dentist as your child flails and claws desperately to get away. The screams in the ER through which your barely verbal child asks, “When?” as you say, “It’ll be over soon.” The screams when it takes seven of you to hold him down to get an IV in.

No, I don’t think you ever get used to any of those screams. You often just retreat to some sheltered and shielded place inside some dark recess of yourself and hide, or maybe leave your body entirely, until at some point it stops.

RevivalThere are the screams of your minimally-verbal or non-verbal child who cannot tell you what hurts or how. There are plenty of verbal kids, too, for whom pain and body sensing are too abstract. They just know they hurt, and they want it to stop. And you feel powerless as you are left to guess what the body of your beloved child feels and needs desperately in that moment.

There are the screams of your neurotypical children who know exactly what is going on. They know their pain precisely and exquisitely. They scream in absolute terror, and you cannot stop the blood draw, the dental work, or the IV because they have to be done. They have all the words they need to express the bloodcurdling fear.

“STOP IT STOP IT STOP IT NOW NOW NOW NOW GET AWAY STOP IT NOW!” You try to soothe and reason with them, but that’s impossible. You even try to bribe, but they’re way past that. Even with all the additional tools you have in your arsenal with neurotypical children, terror is terror, beyond reach of anything except the pain finally stopping.

We have been in the pediatric cancer hospital and clinic. We have heard the screams of children enduring untold pain, the chemical war being waged in their own bodies. Their skin on fire, their weak bodies vomiting up bile and cancer, their legs failing them as they try simply to stand.

They stare blankly at the floor and the walls and their parents. Some are too exhausted to scream. Their screams are in their eyes, radiating from their souls. Some unknowable dark energy on that hospital floor turns your blood cold.

Eli screams when they draw his blood for the thirtieth time. He is just so tired of it all. He vomits what little is on his stomach and turns green. He is too sad to scream. He just quietly whispers, “When will I be done with the chemo?”

He goes to therapy now because he is showing signs of traumatic stress. He holds in so much screaming because he doesn’t know how to let out all that confusion, anger, exhaustion, terror, and hurt. His body has betrayed him. He is five years old. He has no language for this.

I see his face when he hears the other screams. Sometimes he just pauses and continues playing as if it’s not happening. But I know better. He’s the most observant child in the world. He has to hear it, but something inside him closes down, covers over that gaping wound to protect his precious soul. It is how he copes, and I respect it. Sometimes you can see he wants to go comfort whomever is screaming, but he is uncertain. He doesn’t know what he should do.

Maybe he innately knows Mr. Rogers’s advice that in times of great suffering, look for the helpers, and in the oncology clinic, there are so many helpers. He has such a good and loving heart. I want so desperately for him to come through this with that intact.

Another child a few infusion chairs away behind a curtain, screaming and trying to rip out the access needle from his chest. I see him later. He is going bald. You can tell he was once a strong, vibrant kid. He is angry that life has betrayed him. I want to cry.

I wonder if the doctors and nurses go home and scream sometimes, whether they drink their terror and break the bottle against the wall. They know some of these children will die. I don’t know how you make your peace with that. I think they are superheroes for every life they do save. But we are human, and we most often remember the faces we’ve lost.

In nearly every facet of my life, screaming is never far away. Blessed are those who choose to enter these hurt and uncertain places I’ve seen and seek to help others find rays of peace.

May those of us for whom this is part of our lives never become immune to it. May we instead find a way to accept our place in it, to soften our hearts to embrace those who need us rather than allow our hearts to harden against it all.

How do we do this? I have no idea. Many of us are here in this state of being because this is how the story of our lives has played out so far.

Maybe just ask whomever or whatever power or force greater than yourself that you believe in to help you. I don’t know how it works, but I think it somehow does.

Help me to soften my heart toward someone in pain rather than harden my heart and retreat inside myself. Help me to walk into dark and difficult places and show compassion to all who are heavy-burdened. Help me to be silent and hold a space of peace, mercy, and grace when there are no words. Help me to reflect the sound waves of the screams with waves of love and comfort. And when the screams are my own, help me to know that there are people holding me and my heart in theirs until I find my voice again.

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