meet you at the top

Zero.

That’s how many days I was given off for paternity leave.

Zero.

I took a month, but I was forced to use my vacation time and time without pay. My girls needed me. They still do. And my girls are our future. My future. Coley's future. Your future. The future of the human race.

Why don’t we have a system that supports parents spending time with their babies after birth? To be there, to care for them, to keep them mentally and physically healthy, to help them adjust to the world. Newborn babies need their parents more than any company needs an employee. We need to get our priorities straight.

If the system won’t give me the time, I’ll take it myself. But not everyone has that luxury. The lack of support for maternity and paternity leave in this country is cruel and unfair, and it needs to be corrected as soon as possible. 

I returned to work one month, to the day, after the girls were born. Two weeks before Juniper began to experience seizures. I distinctly recall being on a call with my boss discussing work priorities as we drove Juniper in to the hospital after she experienced  a cluster of myclonic seizures. I remember juggling the phone, diaper bag and infant carrier, as my wife laid Juniper’s tiny body on a hospital scale.

I realized then that Juniper’s condition might cause the world to see me and my family differently, but that the working world would always see me as the same. The working world would always have the same expectations of me: to be productive, to sacrifice considerable time and energy, to give everything I had. I had always done those things before. Why couldn’t I continue?

Juniper has three, hour long, therapy appointments a week (physical therapy, occupational therapy and speech therapy) that I try my best to participate in, because they are critical to her meeting important milestones. She meets with Dr. Luke quarterly, the pediatrician monthly, and the cranial doctor bi-weekly. She has genetic appointments, GI appointments, appointments for blood draws, lab and radiology tests.

We administer multiple medications to June twice a day. We spend hours a week processing paperwork for bills, insurance, appeals, applications. All of these appointments and drugs cost significant amounts of time and money. Medical, therapy and child care costs are approximately 4 times our mortgage. 

All of this has weight. It’s a very heavy pack to carry. I always thought of myself as someone who could keep up. Someone who was good at his job. Someone who could race to the summit and be amongst the first ones there, helping people along the way. But now I have a heavy load. I have a lot of weight to carry. And it slows me down. I am trying harder than ever before and I’m falling behind.

I can’t sprint to the summit like I used to. I’m doing my damn best and everyone is just passing me by - often, it seems, with a middle finger in the air. 

Starting to sound like a rant? A bunch of excuses? A sob story? Starting to seem like I want you to feel sorry for us? Like I’m looking for sympathy? Well, this post isn’t for me. It’s for every parent that has a child with special needs. For every parent, really. 

Empathy:

It’s the one thing I want to make sure to instill in my little girls. 

To Laurel and Juniper: If you see someone fall, pick them up. If you see someone with a lot to carry, take some of the load. If you see someone who is exhausted, help them find a place to rest. And when you become the president of a company, or of this country, please give the parents back to their children. Let them be there for their kids more than I can be here for you.