February 2021 - Epilepsy Dad

Strapped

Tapped.
Trapped.
Strapped.

We toured another school the other day. Between the brick-and-mortar school that failed to accommodate my son and the virtual school that seems to be trying but may not be able to accommodate him, it’s becoming more apparent that the Industrial Era education complex is not for children like my son.

The school we toured is about an hour away. That’s a long drive to contemplate making twice a day, five times a week. We’re already strapped for time with counseling and therapies and appointments and jobs and life. But if this school can accommodate our son in a way that helps him learn, grow, and feel successful, then we will figure it out.

The school is a private school. It costs as much as a house payment every month to attend. Although I am extremely grateful for my job and the salary and benefits it brings, we are still a one-income family. We have insurance through my job and, in Pennsylvania, secondary insurance for my son, but they don’t cover everything.

We’re also trying to save up for when we’re gone. We want to do what we can to set up our son for a comfortable life because we don’t know what the future holds. He may be self-sufficient, or he may need help, and we don’t want him to have to struggle.

And we’re trying to do these things and make these choices while also living our lives. We like to get out of the city. We like to go on vacation and give our son and our family experiences that help make everything not just a chore. These things all cost money, and there is never enough money to do them all comfortably.

Of course, that’s when we have enough energy to do those things. Energy is another resource that is in tight supply. It takes so much of it to get through the day-to-day, juggling everyday responsibilities in addition to those of having a child with special needs. One reason we liked escaping to Maine last year was that it helped replenish our tanks, but those reserves quickly get depleted when we return to normal life.

Time. Money. Energy. Every day involves making choices between them to hopefully provide the best life for our son and our family. But it feels like the longer we have to choose between them, the more strapped we get for each.

Our Road To A Service Dog

My wife and I created this video to share our experience working through the process to get a service dog for our son. If you’re thinking about getting a service dog for your special needs child, we hope you find this information helpful, and please don’t hesitate to reach out if you have any questions!

Enjoy!

Links Mentioned In The Video

4 Paws for Ability https://4pawsforability.org/

Twitter:

Dave: @epilepsy_dad
Kerri: @lostandfoundmom

Instagram:

Dave: @epilepsydad
Kerri: @lostandfoundmoms
Emmet: @4paws_emmet

You can also subscribe to our YouTube channel here: EpilepsyDad on YouTube

Trapped

The pandemic has us feeling trapped.

We’re trapped in isolation. It’s been almost a year now since we’ve been able to hang out in person with our friends. It’s been almost a year since I’ve stepped into the office and looked across a conference table at a colleague. It’s been almost a year since my wife and I have sat down in a restaurant or gone on a proper date.

We’re trapped in the city. We’ve stayed downtown because we spent so much time in the nearby hospital and because I work a few blocks away, so it saved us time and money. But our small condo feels smaller since our son and family have grown with the addition of a (not-small) seizure dog. We’ve been thinking about finding a place with a little more space. However, the exodus of people leaving the city has home inflated prices in the suburbs. Few people want to move into the city during the pandemic and no one knows how much cities will bounce back if more people are working remotely at the end of this. As a result, we can’t go anywhere.

We’re trapped in our schools and our jobs and our patterns. We’re trapped by our trauma. We’re trapped by our pasts. We’re trapped by our circumstances. We’re trapped in our lives.

The sense of being trapped is suffocating. The air is slowly escaping our lives and leaving us struggling for breath.

We occasionally find a way to break free. We escaped to Maine last year in a desperate attempt to catch our breaths. But, ultimately, we were pulled back into the real world and felt the trap closing tighter.

As much as I would like to believe that this sensation was caused by the pandemic, the reality is that we were trapped before the world started getting sick. We were already isolating ourselves. We had already let the difficulties we were facing take away our freedom, our connections, and our air. This was our pattern before it became everyone else’s pattern, too.

The question, then, is when the world opens back up, what will we do? Have we learned anything during this time of forced confinement that will cause us to do anything differently? Will we have more energy to do anything differently? Or will we continue on, doing what we did before and during the pandemic? Will we choose to stay trapped?

There is a quote that says, “Water, when trapped, makes a new path.”

I suppose I should try to be more like water.

But it takes so much physical and emotional energy to do something different. It takes energy to change mindsets. It takes energy to pretend, and to move forward. Trapped water builds pressure and it uses that energy to push through obstacles. Pushing through our obstacles and making a new path takes energy that, most days, we don’t have.

I guess I just imagined that it would be different. I imagined it would be easier. But it’s not.

Maybe that’s okay. Maybe that’s part of the journey. Maybe it’s enough that we’re making it through right now. Maybe it’s enough that we’re still here, still living, still trying, and still together. I’m so grateful for that.