Tag: gratitude

Thank You. That’s True.

I think, as parents, we all have ideas of doing better than our parents did.

We want to pass along what we think our good qualities are to our children and not project our bad qualities on them.

I have a hard time accepting compliments. I don’t let them in. I minimize their effect on me by deflecting. I smile, but I filter them. I minimize them by deflecting credit. Or by telling myself that the person is wrong. I know the other person is wrong. They don’t know all the details. If they did, they wouldn’t have complimented me. I punish myself with the words. Pride is a sin.

I shrink when someone compliments me. My son grows. When we praise him, I see him get bigger. I see him smile. He likes for me to tell other people the story of him doing something well, a good choice he made on the baseball field, or something cool he did playing Fortnite.

I’ve been trying to follow my son’s lead and let compliments in. My therapist suggested, rather than trying to convince the complimenter why they are wrong (even if I only do it in my head), I instead respond with “Thank you. That’s true.”

At first, I practiced with my wife, and the words were coated with so much sarcasm that they were unrecognizable. The words were fighting so many years of programming that I needed to cover them with something to get them through. It was like dipping broccoli in cheese to get a child to eat healthy food.

Compliments are my broccoli. Sarcasm is my cheese.

thank you. that's true. epilepsy dad

While it’s a fine way to start, the hope is that eventually, the child doesn’t mind or may even like the taste of broccoli. I’m at the stage where I don’t need as much cheese, but it’s not no cheese. The positive messaging is taking over the negative programming that has controlled my reactions for most of my life, and it’s showing up in my relationship with my family and myself.

My therapist noticed the change and complimented my progress. So has my wife.

Maybe I’ll try to take the compliment.

Thank you. That’s true.

Giving Thanks And Giving Back

Each December, we make a special end-of-year donation to a charity. This year, we are giving thanks and donating to the organizations that helped my son and our family through our first year with epilepsy.

We are very fortunate. Even though my son’s epilepsy is complicated, we have insurance, and I have a good job working with compassionate people who allow me to balance work with taking care of my son and my family. We’ve met a lot of other families that were less fortunate, and the groups that we are donating to this year provide help to everyone. That support and the research necessary to better understand epilepsy costs money, and that is why we are donating.

If you are looking for a place to put  a donation at the end of the year, each of these groups has had a direct, positive impact on my family, and I would appreciate any support you could give them.

Children’s Hospital of Philadelphia

chop childrens hospital of philadelphia

We spent more than two months on the Neurology floor in the Children’s Hospital of Philadelphia (CHOP). Many of those days, we were at the bedside of our son praying that the seizures would stop. Thankfully, we were able to eventually go home thanks to the many, many people at CHOP that took part in my son’s care. The doctors, therapists, Child Life Services, custodial staff, EEG and phlebotomy techs, volunteers, and especially the amazing nurses on the neurology floor, collectively took care of our son and our family, and we are unspeakably grateful.

You can donate to the Children’s Hospital of Philadelphia on their Donation page.

Children’s Hospital of Philadelphia Ketogenic Kitchen

chop keto ketogenic kitchen childrens hospital of philadelphia

Our son has refractory epilepsy, which means that he doesn’t respond well to medicine. To help with his seizures, we were put on the ketogenic diet. At CHOP, on-boarding to the keto diet is a week-long inpatient process where the children are monitored while adjusting to the diet and where the families are trained on how to be successful with the diet, including classes in the Keto Kitchen on measuring and cooking keto meals. The Keto Team also hosts keto cooking classes, and fund a culinary intern to explore more creative, tasty meals for the keto kids.

You can donate to the CHOP Keto Kitchen on their Donation page.

Epilepsy Foundation of Eastern Pennsylvania

efepa epilepsy foundation of eastern pennsylvania

When my son was diagnosed with epilepsy, we spent the first few months in the hospital surrounded by an amazing support network. When we left the hospital, though, we felt very alone. We didn’t know who to talk to or where to find more information about our new world. We didn’t know what resources we would need or what was available. We didn’t know how to talk to the people around us about epilepsy. Fortunately, the resources available through the Epilepsy Foundation and the Epilepsy Foundation of Eastern Pennsylvania (EFEPA) helped. We walked in their Summer Stroll and learned more about other programs they had for the epilepsy community. They also came in to my son’s school and talked to his teachers and classmates about epilepsy. When the world seemed big, and scary, and dark, EFEPA provided a bit of light.

You can donate to the Epilepsy Foundation of Eastern Pennsylvania on their Donation page.