Walking Through The Mud

I’ve been having a hard time finding the motivation to write lately. The thoughts in my head and the words on the page all seem the same as they have been for the past few months. The past few years.

My son isn’t better. He’s still seizing. He’s still limited. He’s still heavily medicated. We’re still dealing with his school and trying to get him an education.

Everything is harder than it should be.

It feels like I’m walking through mud. Every step takes extra effort. Every step requires my full attention. I need to push my hands through the mud to search for my leg that is trapped in the muck. When I find it, I have to wrap my hands around it and pull it towards the surface. The mud resists, not wanting to let go. Even as my leg reaches the surface, the weight of the mud clinging to my legs and shoes threaten to pull it back down. It leaves me unbalanced. Even though it is only inches in front of where I started, I’m forced to push my foot back through the mud to the ground underneath. Even though I know it means that I will have to struggle for my next step, it’s the only way to find temporary stability. Otherwise, I risk falling over and being fully consumed.

The struggle reveals itself everywhere.

Parenting is harder.

There are fewer right answers. There is more uncertainty. There is more acceptance of things that no parent of a 9-year old should have to accept.

Marriage is harder.

We’re in the same stressful, relentless situation watching our son struggle and seizure, but we have different perspectives and have different needs. We’re both trying to be there for our son but we go at different paces and we aren’t always within reach of one another.

Work is harder.

It’s hard to go to work after endless sleepless nights. It’s hard to concentrate on the work when the mind wants to worry about an upcoming surgery or the handful of seizures he had that morning.

Friendship is harder because we’re so focused on the things we can’t afford to ignore that we ignore the relationships we need. Finances are harder because of the mounting costs of medical care, nanny care and tutoring. Diet and exercise are harder because we’re always so tired and pressed for time and it’s just easier to order something from the couch.

But like many families in our situation, we continue to move forward. We keep taking labored steps towards a destination that we can’t see. Because where we are isn’t where we want to be. Because we hope we are heading in the right direction. Because there is no other choice.

The mud is unforgiving, but in those moments of brief stability in between each step, I sometimes catch a glimpse of something wonderful. The struggle has given us gifts. I am a better parent to my son because I can’t take a moment for granted. I am a better partner and friend to my wife because we know what it is like to truly need and love another. And I have brought my whole self in to work and been surrounded by people who accept and care about me. We found understanding friends. And we have learned the value of trying to live the best life we can with what we have.

It’s not always easy to see these gifts when I’m stuck in the mud. It’s difficult to be motivated when everything feels harder than it should be. But I’m doing my best to keep moving. I’m doing my best to learn and to grow and to be a good father, and husband, and friend. Because, really, there is no other choice.

“The lotus flower blooms most beautifully from the deepest and thickest mud.” ~Buddhist Proverb

Goodbye, 2018.

Today is the start of a new year. The Earth has made another full rotation around the sun as we hurtle through space and time. Along the way, moments were left behind like discarded Polaroid photographs that littered the void with what was and will never be again.

As the universe continues to move forward, it leaves those pictures out of reach. Except they are more than pictures. They are memories with an emotional connection to people and to a time that cannot be experienced again.

Or changed. If I do try to stretch in to the past, it’s usually to try to hold it and wish I had something different. But that often leaves me feeling sad or empty or guilty.

There are so many memories that I want to forget. I’m afraid if I reach back to grab one that it will pull me back into the vacuum and suffocate me. Maybe that explains why I’ve never been particularly good at looking back.

So I try to focus on the present, except that I’m not always great with that, either. I’m better than I was, but I still miss a lot of what is happening in front of me. Maybe things are moving too fast. Or maybe I do it intentionally because sometimes what I see in front of me is hard.

My son is stills seizing. His anxiety is worse and it is isolating him. The keto diet is particularly hard right now with a lot of sneaking food. The VNS surgery that I resisted for so long has left my son with a vibrato in his voice that occasionally makes him insecure.

But if I could reach out in to space and pull one of those pictures from the past and hold it up to the present, I would see how different this year is ending than the last. I would see how much progress we have made.

We met new people and built stronger relationships with the people in our circle.

We have found a nanny and a tutor that has made our lives better in so many ways.

We had countless examples of people showing my son and our family immeasurable kindness and compassion, from his baseball coaches making him feel like a part of the team to strangers that saluted him when he wore his Captain America costume.

After a long struggle, we have our IEP and are getting the supports put in place to help protect my son and get him the education that he is entitled to.

We were honored by the Epilepsy Foundation Eastern Pennsylvania at their Mardi Gras fundraiser and joined their board to give back to the organization that has given so much to us and others in our community.

We returned to the National Walk for Epilepsy and my wife and I both ran events at the Philadelphia Marathon to raise money as part of the #AthletesVsEpilepsy team.

This blog has connected me with so many people.

And throughout the year, our life was sprinkled with countless tiny, special moments. Like stars shining through the black curtain of space, we only needed to look up to see them. To let them in. And to be amazed by their splendor.

Last year was a year of transition, taking us from where we were to where we are. I’m looking forward to this year as the year that will get us closer. Closer to my son’s seizure dog. Closer to an answer on the VNS. Closer to each other and to the people around us. Closer to who I want to be. And closer to understanding our place among the stars.

I’m not great at looking back. And I’m not always good at looking up. But I want to be.

Maybe that is something to look forward to in 2019.

What Can’t Be Undone

The suggestion to implant a VNS was made by our neurologist years ago. But there were still options to try so we held off. Unfortunately, CBD was not our miracle and other medications didn’t help. The seizures kept coming and we ran out of things to try.

When our neurologist brought up the VNS again, I felt the overwhelming weight of the decision squeezing the air out of me. If it even has the potential to improve his quality of life, she asked, shouldn’t we try it? Of course, she was right, but that knowledge didn’t help me breathe.

Neither did having an amazing surgeon in one of the best children’s hospitals in the country. Neither did the love and support of friends who would try to reassure me about how safe surgery and anesthesia are. Neither did my wife who held everything together when I couldn’t.

It wasn’t the mechanics of the surgery that occupied my thoughts. It was the idea of cutting into my little boy. It was the permanence of it all. It was the thing that can’t be undone.

We can wean off a medication that doesn’t work. We can stop the ketogenic diet. If years from now his seizures miraculously go away, we could stop everything and pretend that all the hard things about his childhood didn’t happen. There would be no signs, no trace. I could live in denial about how traumatized I was by this experience.

But the surgery forced me to confront the fact that these things aren’t going away. That the magical, unburdened life I wanted for my son is not going to materialize. That I can’t fix this or make it go away. That this is real, and that the future for him will include challenges brought on by his condition. That I’ve somehow failed him.

From the time the decision was made to the time they wheeled him away hopped up on “giggle juice”, I pushed my feelings down. I was practical but emotionless. I showed up for the appointments and answered the questions as he was prepped for surgery, but I wasn’t really there. I couldn’t be. I had to push it all down just to appear strong enough to make it through.

Even after his surgery was over, I had a hard time being present and acknowledging what had happened. I had a hard time looking at his scars. They were bigger than I thought they would be. Instead of small ones hidden by clothes, they’re long and visible. I looked away. I caught a glimpse of the device itself, raised under the skin and I looked away. It’s more than just being squeamish, it’s a spotlight of reality shining into my eyes and blinding me.

I worry that he’ll think I can’t look at him. I worry that he’ll feel like he did something wrong or that there is something wrong with him that is causing this reaction from me. I’m worried that I can’t get over my own hang-ups and be there for him when he needs me.

I tried to explain to him the feelings I was having but he didn’t understand. I didn’t, either, until I started to unpack them. But I still don’t know what to do with them. I want my acceptance to turn the spotlight that was blinding me into a beacon that brings me to him. But instead, it feels like the light has turned off. It’s not repelling me but it’s also not drawing me in. Instead, I’m left in the darkness trying to find my way.

But I can hear his voice. And I hear my wife’s voice. They’re calling me. And so I’m pushing through the blackness, the emptiness, to find my way back to them. It’s scary and impossibly hard. But I can hear them and they need me. I can hear them, and I don’t feel alone.

I’m on my way.