Friday, September 9, 2016

On Love, Showing Up and Peter.

When I was in kindergarten, my dad was driving me to school. Without warning, he quickly pulled in the parking lot of a gas station and when I looked at him, he was having a seizure. I was very afraid, and I'll never forget him looking over at me, reaching out for me, trying to reassure me that he was ok.

I went into the gas station and asked to use the phone. Thankfully, my mom had taught me our phone number and I was able to call for help. Needless to say, I didn't go to school that day and my dad spent the day resting at home.

That was the first time I heard the word "epilepsy." I didn't understand it, but I knew that it was what made my dad tremble and shake.  From that day forward, I always watched for another seizure, and while he had many other health issues, he never had another seizure.

My dad passed away in 2014 and while I talk about his other illnesses, I never talk about his epilepsy, mainly because it didn't interrupt his daily life very often. Epilepsy was just a part of life and while his heart attack, stroke and eventual lung cancer were life-altering, epilepsy never really stopped him.

Unfortunately, this after-thought illness skipped a generation and when she was three years old, my niece Raquel was diagnosed with epilepsy.

Raquel cried a lot as a baby, more than most babies. No one ever really knew why, and she didn't have language to explain it either.  As she got older she stopped crying so much, but it was noticeable that something was wrong.  Her diagnosis was a brief reprieve; my dad's epilepsy was easy to control with medication and everyone was sure that was all Raquel needed. Unfortunately, Raquel's epilepsy wasn't like my dad's, and for most of her life, Raquel has endured seizures daily, sometimes several times a day.

On so many levels, Raquel isn't defined by having epilepsy.  She is creative, an artist and likes movies and music.  Raquel played soccer for years and is a fierce competitor.  She is fully aware of her epilepsy, knows when seizures are coming on and is often angered by it.  She has bad days and good days and days when she's wiped out from having seizures. She's spent a lot of time in the hospital and has been studied over and over again.  It seems that no one can find the right combination of treatment for her.  At best, her epilepsy is managed.  Because other kids oftentimes suck, it's hard for Raquel to make friends. School hasn't been the best experience for her.

Baxter, UNMH Service Dog 
Raquel and I don't always have much to talk about. Sometimes, I think that I am awkward because I don't know what to say, and I don't want to upset her.  Other times, we talk about the little outfits she sews for her other dog, her art projects or her schoolwork. My awkwardness isn't Raquel's fault; I don't always know how to relate to people when they are ill. Any time my dad was in the hospital, I would stay there all day, but I would float between the waiting room, his room, the cafeteria and the gift shop. In all reality, it's a combination of helplessness and fear that make me so awkward, and I don't know how to reconcile those feelings.

What I do know how to do is organize and act.

The last time Raquel was in the hospital, a very friendly volunteer came to visit named Baxter. He is a white, shaggy dog who visits all the children in the hospital.  Raquel brightened up when Baxter came to visit. My brother-in-law said "watch, we're going to get her a service dog." A few months passed and he, my sister, Raquel and her older sister began looking for a dog.  After meeting a few dogs, Raquel met Peter and they were fast friends.

Peter is a Boxer mix and a rescue from the Albuquerque Animal shelter.  "Wonderful!" I thought, "they have a service dog!" What I didn't realize is that training for Peter comes with a price tag of about $2500.00.  The price is worth it; Raquel has already shown signs of improvement from having Peter around and he will also be her Epilepsy Response Dog, meaning he will stay by her side when she is having seizures and alert others if needed.

After working as a school secretary for years, my sister decided to go back to school to be a teacher. Ten years of going to school part-time and working full time, she is finally ready to student teach, which means she has taken a huge pay cut. My brother-in-law works full time as well, but, as is the case with most families in the US, there isn't extra money to train a service dog.  Going public and asking family and community to pull together isn't easy, but it's vital.

Remember I said I know how to organize and act?  It isn't a skill I developed on my own.  My family is one that knows how to pull together a party, a dinner, a wedding, a baby shower or a funeral reception with very little notice or supplies. We aren't just there for each other, we show up, so when my sister told us how much it would cost to train Peter, we began making plans. An enchilada dinner! A spaghetti dinner! A silent auction! A raffle! We decided to start with an online fundraiser.

My dad didn't always know how to show his love and affection for us, but in my darkest times, like when I didn't even have a bed frame, my dad took me to buy one. He showed up for me.

I inherited many of his personality traits, and I don't always know how to show my love for my family. When there is an opportunity to do for them, I take it.  If a service dog will make a difference in Raquel's life, why wouldn't we do everything we can to make it happen? I can't make friends for her or take away her seizures, but I can work to raise money to train Peter.

So can you.

If you keep up with me, you know that I am always writing about some sort of politics or injustice and urging readers to take action. I am now urging you to donate to Peter's training fund.  While large donations are definitely welcomed, even $5 makes a difference.

Perhaps you'll never meet Raquel or Peter, but I can guarantee that you will be a part of changing their lives.

I don't always know how to connect with Raquel, but I love her fiercely, all the time. Thankfully, Peter does as well.

Click here to donate to Peter's Training Fund.