parenting Archives - Page 39 of 47

Getting Unused To The Sound

We’ve lived almost every day of the last two and half years with the sound of my son having a seizure. Usually, in the early morning, the distinctive sound my son creates as his body tenses and contorts echoes through the halls until it reaches my ears and stirs me from my sleep. For two and a half years I have been on guard, listening for that sound that served as an alarm calling in the dark. I’ve spent most nights periodically waking to watch and listen to the video monitor. This has been our routine. This has been our life.

When his seizures started, I would rush to his room with every seizure and lay with him until he fell back to sleep. Sometimes I would catch another seizure when it started. It was somehow comforting being there with him when they happened, from beginning to end. To hold him, to rub his head, and to let him know that I was there and that it would be over soon and that he would be okay.

As time went on, my son started putting himself back to sleep before I could reach him. I started watching the monitor as he came out of a seizure to see if he needed me. More and more, he would simply turn over, pull the blankets back up to cover his body and fall back to sleep. As much as I liked being there with him during a seizure, the new arrangement gave me a few extra minutes of sleep.

In the last month, we’ve also been able to string together (we think) a few seizure-free days in a row. I say “we think” because some of his are so short that they are easy to miss, especially in the middle of the night. But on a few of those nights, he was with us and he did not seize. He even had his first seizure-free week since they began.

I felt like we turned a corner. We made the most recent change to his medications a few weeks before those seizure-free days and I almost let myself believe we had solved the riddle. But then my son got sick and we were again visited by our most unwelcome guest. He rides such a fine line between seizing and not that even a common cold can undo a streak.

Hearing seizures in the middle of the night had become such a part of our routine that, when they stopped, it was easy to fall into the trap of thinking that they were gone. I stopped thinking that a life without seizures was possible, but when we had a week without them, I was too quick to assume that they wouldn’t come back. I felt as if we had been lifted from this unforgiving place. When they did come back, I fell from such a great height that the impact nearly crushed my spirit.

As grateful as I was for those days without seizures, they tugged at my desperation. They opened me up at my seams and stuffed me with false hope before closing me off. Now I’m pulling at the stitches trying to free myself from unrealistic expectations.

The reality is that the sound of a seizure will be a part of our acoustic landscape as long as our son is living with us. Even if we see another stretch of seizure-free days, the threat of another will always be there. There is no escaping its reach, no getting unused to the sound. The only thing I can do is respond when the alarm sounds, which I will do whenever I am called.

Superman And Me

When I push through the huge revolving doors at my office, I undergo a transformation. Superman had his telephone booth where he changed from a reporter to the Man of Steel. I have a spinning wall of metal and glass where I morph from the father of a kid with epilepsy in to the Man of PowerPoint.

Once I step to the other side, I hide my true identity. No matter how little sleep I got the night before or many seizures my son had that morning, I smile at the guards as I pass through security. I say ‘Good morning‘ to my fellow passengers in the elevator and the people I pass in the hall. Inside the walls of my own Daily Planet, I separate my two lives and only show the person that my colleagues expect to see.

The thing about leading two lives is that they are impossible to separate. Clark Kent doesn’t stop being Superman when he wears his glasses. Both identities share the same thoughts and emotions and super powers. He thinks about saving Metropolis while sitting at his desk. He listens for the call of someone who needs him while he grabs coffee in the breakroom. He can’t be one or the other when he is both, regardless of which mask he wears.

For an ordinary person, it’s exhausting maintaining this separation every day. On bad seizure days, I struggle to keep my focus on my work. My thoughts often find their way back to my son, wondering if the seizures have stopped or how he is doing in school. I check my phone constantly to see if I missed a call or a text from my wife letting me know that I am needed somewhere else. Superman only had a city to protect. My son is my world.

With every interaction, it takes energy to adjust my mask and ensure that it hides the turmoil inside. After a night without sleep, it’s especially difficult but there is no other option. I have to be able to focus on my work. My job is what pays the bills and provides us with health insurance. The weight of responsibility and the need to perform often feels like it would be too much even for Superman. And yet, somehow, this is my every day.

I don’t always succeed. There are days where it is all too much. Try as I might to hide it, pieces of my reality are visible to the outside world.

Their planet crumbled but Superman, he forced himself
To carry on, forget Krypton, and keep going
~Crash Test Dummies “Superman’s Song”

On those days, I do my best to carry on and keep going, too. I will myself to get to the end of the day so that I can go back through those revolving doors. When I step out onto the concrete, I start to undo my disguise. With every step that takes me closer to home, I shed the layers of my corporate costume. No longer needing to exert the energy to maintain my facade, I drop my mask to the ground.

As I take those last few steps up to our front door, I open myself up and let the joy and fear and hope and love wash over me. Turning the doorknob, I can already hear laughter from the other side of the door. Pushing the door open, I’m rewarded for my impossible effort during the day with “Daddy!” and I let out a cleansing exhale that I’ve held in all day.

This must be how Superman feels when he takes off his glasses at the end of the day. Finally, I can be who I am supposed to be.

Planning For An Uncertain Future

I slid my finger up the length of the envelope, tearing it open along the spine. Pushing the sides apart with my thumb and finger, I reached in and pulled out the folded piece of paper. I lifted the top section above the crease to reveal a bold, red logo and the words “To the parents of…” introducing the rest of the text.

The form letter listed one of my son’s prescriptions at the top and used phrases like “convenience and cost-saving” and “long-term prescriptions”. After I finished reading the letter, my eyes retraced their path and scanned the paper, searching for the words that my mind refused to process the first time around: “long-term”.

“Long-term.” I raised my head as I lowered the letter down to my side. “Long-term.” The words echoed in my head. “Long-term.” My mind ran through inflated synonyms. Never-ending. Without end. Constant. Permanent. Forever. My son would be on these medicines for the rest of his life. The letter became impossibly heavy and pulled itself from my fingers. It landed on the floor without a sound.

When my son was two, long before his first seizure, we set up an educational savings account. It’s one of those investment accounts that provides interest-free growth and tax breaks along the way, but the money must be used for college. We’ve been funding the account ever since, even after my son started struggling with memory recall and attention. He still does and, if things get worse or if his condition changes, he may not go to college. I struggle to acknowledge that possibility. I should look at other options that hope for the best but aren’t penalized if things don’t work out, but I feel like I have given into his condition. That his epilepsy would have somehow won and stolen my son’s future.

Looming larger over me is the idea of what would happen to my son if my wife and I passed away or were unable to take care of him. Our parents are at an age where caring for a child isn’t an option. Before he had epilepsy, we had asked friends in Colorado to care for him. But now, I look at how complicated and hard life can be dealing with epilepsy. I imagine the commitment to care for him as a huge burden that I can’t bring myself to ask anyone to bear. I need to write a letter to our friends and ask if they would be willing to care for a beautiful, amazing child that has epilepsy but I can’t. I can’t risk the feeling of rejection, of rejecting my son, if they say “no”. And I can’t face a world where that’s all I hear and where my I feel like I will be leaving my son alone.

Until I do, we’re sitting in this terrible space where nothing is decided and where everything is at risk. Instead of being brave, of doing what needs to be done, I have been frozen. Being responsible feels like an impossible task when it involves admitting to the cruel condition that my son may live with forever. I’m frustrated not only by my inaction but because I know the worst outcome would be for someone else to make the decision for me. It makes me feel like a terrible parent. It makes me feel like I am letting my son down.

It’s hard to figure out how much hope to have, how much reality to let in, or how much to commit to the possibility that there is an equal chance that things get worse as things getting better. It’s not that I thought my son would be cured. It’s not that I didn’t think that he would be on these medicines for the rest of his life. But I also didn’t actively think that he wouldn’t be cured or that he would have to stay on his medicines for anything longer than today. I didn’t open my mind to either possibility. Instead, I kept my head down and tried to live in the present without looking too far into an uncertain future. Reading the letter reminded me that my son’s epilepsy and his medications will exist beyond today, whether I wanted to face the idea or not.

The reality is that these types of things will continue to weigh me down and keep me feeling stuck until I take action to remedy them. The best thing I can do is to acknowledge that the future is uncertain and to take control of the choices in front of me.

Maybe facing the situation will help. Maybe writing about it will spur me to action. Maybe the new year will renew my strength that last year depleted.

I picked the letter off the floor and put it on the desk in the pile of things that I need to do. It’s time to be brave. I pulled out the chair and sat down in front of the computer and started drafting a letter of my own.

“Dear friends,” it began.