How to Love
Originally published privately on Facebook on October 24, 2020. Minor edits have been made for better context.
I don’t know how to write this. Frankly, I’ve written about all topics that are easier for me and my family to discuss and there’s some looming, bigger lessons that we’ve learned along this journey of being LP (Little People) parents.
The emotions are complex and the struggles are very real. As I’ve shared our journey I have been blessed to have very thoughtful conversations with many folks and it has given me the clarity to be able to write this. Today’s post, as an extension of our story, will take a different tone and timbre than what I’ve written so far but it all pertains to the pursuit of happiness, life, and liberty. (see what I did there? I’m a dad, those jokes are bound to happen)
“You shall love the Lord your God with all your heart and with all your soul and with all your mind. This is the great and first commandment. And a second is like it: You shall love your neighbor as yourself….”
Jesus
Love your neighbor as yourself.
Love your neighbor as yourself.
Love your neighbor as yourself.
Today isn’t a proper exegesis of what Jesus said – although I would gladly give that over a cup of socially distanced coffee – but instead some thoughts about what has been echoing in my head and in the conversations of those who aren’t as “able” as us folks who don’t have struggles with disabilities.
Love your neighbor as yourself.
Our daughter, Liberty, will have struggles that are unique to her condition as she grows up. Stairs, grocery checkouts, ATMs, bicycles, cars, personal safety, and job opportunities are all going to pose different obstacles than us average height folks. This is something that Samantha and I heavily consider as we look forward to the future. But the fact of the matter is that Liberty is not alone.
Love your neighbor as yourself.
Sure, there are approximately 30,000 LPs in the US and 600,000 in the world. But you know what? There are people all around us who need the practical love of being loved by us able people. I’m talking about folks in wheelchairs and walkers. I’m talking about immunodeficient and immunocompromised. I’m talking about mental health and those with mental disabilities. I am talking about amputees. I’m talking about people who don’t experience life in the “normal” or the “average”.
Love your neighbor as yourself.
The reality is that there are people with needs all around us in a world built for “able” bodies. Physically, the world is built for those who can walk, sit, stand, recover from sickness, commit to 40 hours a week at job and whatever else is “average”. Mentally, the world is positioned to not talk about mental health or mental disabilities but instead promote the mentally able and marginalize the dis-abled. Socially, we are subliminally taught to not adopt the struggles of others with different abilities and instead pursue your own happiness.
Love your neighbor as yourself.
The reality is that there are many – many – who need love. My journey with folks who have different abilities started long before the birth of my daughter. I was blessed to work with the transition program at a local high school for years. For years, I got to build relationships with students who had different mental and physical abilities. Up until COVID closed down the schools I would still visit them on their high school campus and maintain a relationship with them. I remember one student, who we will call Patrick, had some difficulties at home and specifically with male authority. For years I would talk to him and go through the ups and downs emotionally and relationally as we built a beautiful friendship. Now, any time I see him, at the grocery store, a restaurant, or I go visit him, he always runs up for a big high five and we get to talk about whatever interests him at the time. He was someone with different mental capabilities that just needed to be loved by someone who would stick it out with him.
Love your neighbor as yourself.
The other day I was out for a walk and I saw a woman in an electric wheelchair, holding their young-ish child in their lap and going down the bike lane of the street. My initial reaction was “that’s dangerous” but then I started thinking about it. She was doing the best she could in a world that was built for able folks. You see, the sidewalk was in a strange spot where driveways were cut in to them. At this particular section, the driveway was cut about ¾’s of the way in to the sidewalk and at a violent angle. It hit me. She couldn’t ride on the sidewalk. The world wasn’t built for her or her condition. My heart broke as I watched from the safety of the sidewalk as her and her daughter had to drive in the street. Thank God for the bike lane but I am curious as to where else this struggle is very real and dangerous.
Love your neighbor as yourself.
So back to my story, specifically, how to love? There is a regular, exhausting, practice of being the “only parents” (hyperbole for effect) who carry the burden of adapting the world to Liberty. It’s isolating. As I’ve talked to other parents, I’ve learned that it’s not just us, but many others feel the same. We are often thinking about the accommodations in the world around us for our children. I have spent many nights looking up step stools, second lower hand railings, light switch adaptations, clothing alterations, and the list goes on. The reality is that we are concerned with so much more than we were with our able bodied first born son.
COVID has proved to be an incredibly difficult time. The normal respiratory difficulties of LPs has led us, by the guidance of her doctors, to have to be extra precautious. In a world where many are getting “fed up” or have the ability to act with less concern for the more extreme results of COVID, we still have to walk the line of carefulness on her behalf. It’s a sacrifice that we would take 10 out of 10 times, but a sacrifice that we see many not joining us in. I can count on one hand the amount of times in the last 7 months when someone has reached out to us and asked us how we are doing and how they can support our family and join in her protection. I write this in no way of complaining, but hoping that perspective moves some to action, not just for us, but for all those who are “high risk.”
So, how to love? If you’ve made it this far, first off, thank you. Even knowing that I am heard on the behalf of others means a lot. I should make it clear, my wife and I are affected by this and I am simply speaking to hopefully lay the groundwork for my daughter to stand on as she grows and develops her own voice. You reading this is a good step but I hope not the only step. We are advocates for our daughter and we hope to be a megaphone for those who need it.
There are multiple things that can be done. Get to know someone who’s disabled; mental or physical. Build a relationship with them where you can join them in their struggles. They are human too. Get to know them, their family, the world around them and their struggles. Learn and listen. Seek out their well-being, find out what needs they have. Oftentimes it is to just be treated “normally” and to have a friend who doesn’t stare but defends them and spends time with them. Sometimes it’s physical. Sometimes people need help in their old age, or making their world wheelchair accessible. Maybe it’s putting in a hand railing at some stairs for a toddler LP or putting on a mask when you normally wouldn’t. Know them well enough to surprise them and gift them with something they need. Care for the parents who are just getting the hang of this and the parents whose child will always live with them. Reach out. Walk a mile with someone, learn what it’s like to walk in their shoes and after you’ve gone a mile, walk another.
This is how you love, by loving your neighbor as yourself.