A year and a half ago I'm chasing Luke around a church foyer in Sasktoon. Another service the boy didn't want to sit through. I totally get why, not only does he have ADHD to contend with, he has his mother's antsy genes. I was a terribly impatient high school and college student, my attention span gets me nowhere.
People are starting to clear out of the service and this adorable looking elderly woman makes a beeline for me. She begins like most grandma types by telling me how cute he was. We make a little small talk, she touches my arm and says, "Your life must be really hard." I tell her in a very reassuring voice that yes it is, but every day with Luke is absolutely worth it. I wouldn't trade him for anything. Her face falls in disappointment, "I was trying to hand you a compliment!" and to my surprise storms off.
"God gives special children to special parents." "God will never give you more than you can handle." This is the reality of other people's crises of faith being thrust upon parents like Nick and myself. It's difficult for people to place our circumstances into some people's world view. If it hasn't happened to someone personally, it becomes super easy to give it the emotional brush off. I've learned to tune these moments out, but as a new parent I'll be honest, I found them rather nauseating.
Why was I chosen? What makes me so special? Watching my son go through seeing specialist after specialist and enduring PTSD after numerous procedures, I hardly believe my son feels like a gift! I'm not going to get into how much these phrases or "platitudes" are such a gross misquote of the bible. I get the motivation and heart behind these phrases, but I tell you it feels like a cheap way to disconnect yourself from an uncomfortable conversation. This is not my view of God's identity.
There can be an objectification in a way of disability and so much more so when the kids are little and adorable! Who doesn't like a good internet meme to fuel you for the day? If you ever get a chance, watch Stella Young's TED talk on the subject.
People are starting to clear out of the service and this adorable looking elderly woman makes a beeline for me. She begins like most grandma types by telling me how cute he was. We make a little small talk, she touches my arm and says, "Your life must be really hard." I tell her in a very reassuring voice that yes it is, but every day with Luke is absolutely worth it. I wouldn't trade him for anything. Her face falls in disappointment, "I was trying to hand you a compliment!" and to my surprise storms off.
"God gives special children to special parents." "God will never give you more than you can handle." This is the reality of other people's crises of faith being thrust upon parents like Nick and myself. It's difficult for people to place our circumstances into some people's world view. If it hasn't happened to someone personally, it becomes super easy to give it the emotional brush off. I've learned to tune these moments out, but as a new parent I'll be honest, I found them rather nauseating.
Why was I chosen? What makes me so special? Watching my son go through seeing specialist after specialist and enduring PTSD after numerous procedures, I hardly believe my son feels like a gift! I'm not going to get into how much these phrases or "platitudes" are such a gross misquote of the bible. I get the motivation and heart behind these phrases, but I tell you it feels like a cheap way to disconnect yourself from an uncomfortable conversation. This is not my view of God's identity.
There can be an objectification in a way of disability and so much more so when the kids are little and adorable! Who doesn't like a good internet meme to fuel you for the day? If you ever get a chance, watch Stella Young's TED talk on the subject.
Why are so few churches having this conversation? What ends up being the social change with which churches can take the lead? There are wonderful opportunities in only a handful of churches for low functioning and higher functioning people with disabilities. Some people have take the torch and ran with it. But there seems to be an expectation of sorts laid out by some folks regardless of the level of help and resources some families with special needs may have. That regular attendance is the only way to help. I applaud families that do have that capability for sure!
I have been asked on so many occasions why we do not go to church. I figured I would take a chance to write beyond the cuteness and the inspiration factor and talk plainly about the efforts it takes to be involved in church. Why? Because there may be someone in your life who is struggling in the same area. That you might begin to talk on a plain and human level with those who might really need your help! To offer you an opportunity to see both sides of the coin and perhaps learn something about your own faith or understanding of a higher power. Please understand though this is just our experiences, you need to actually talk to people in order to help others!!
We stopped going to church... now take a deep breath in and out after your collective gasp. It's not just in faith based communities but in a lot of other social norms that we feel massively out of place. As a new mother, I never felt accepted into the parenting community. Sure we had the added roles of occupational therapy and physio. But heck, I changed diapers! I loved a good clothing sale! I adore all things baby! Our move to Calgary had us staying temporarily in a new home build for a month while we waited for our move in date to our condo. I took Luke out one beautiful summer day and watched him as he bum scooted across the sidewalk. A young mom with her toddler saw me out her window a few doors down and came to say hello. With the way her face fell when she found out Luke was 5 years older than he looked from a distance, I could tell she was looking for a play date. I must've been quite the disappointment because I never heard from her again. Reason #1 for our lack of attendance: 9 times out of 10 in our experience, people treat us. It's exhausting!
The Germs!! When you have a child with a compromised immune system, we pretty much live in lock down during the winter. Throughout the year however, the inability to control people's perceptions of how viruses are transferred, the antagonistic resistance to flu shots these things are the stuff of nightmares when your child is medically complex. It's not even remotely a point to argue with.
The Finances. I cannot work right now. You know it's interesting, I just put in an application with a foundation for Luke and it asked me how many days this year Luke has been in the hospital this year. Including long term stays and doctor appointments he's spent three months at the local Children's Hospital. For just health related reasons, he has on top of that missed two months of school. I just cannot work. Nick is the hero in our situation and works crazy long hours in order to help us make ends meet. To go out to church with Luke on my own means I wouldn't be able to participate in anything anyway.
Sensory Processing Disorder Luke's brain has an inability to understand and read the auditory world around him. This causes him a great amount of stress. How fair is it for me to put him through that? To say that he'll get used to it, indicates a lack of understanding of SPD. What adds to the challenge is he has a very atypical version of this disorder.
I have been asked on so many occasions why we do not go to church. I figured I would take a chance to write beyond the cuteness and the inspiration factor and talk plainly about the efforts it takes to be involved in church. Why? Because there may be someone in your life who is struggling in the same area. That you might begin to talk on a plain and human level with those who might really need your help! To offer you an opportunity to see both sides of the coin and perhaps learn something about your own faith or understanding of a higher power. Please understand though this is just our experiences, you need to actually talk to people in order to help others!!
We stopped going to church... now take a deep breath in and out after your collective gasp. It's not just in faith based communities but in a lot of other social norms that we feel massively out of place. As a new mother, I never felt accepted into the parenting community. Sure we had the added roles of occupational therapy and physio. But heck, I changed diapers! I loved a good clothing sale! I adore all things baby! Our move to Calgary had us staying temporarily in a new home build for a month while we waited for our move in date to our condo. I took Luke out one beautiful summer day and watched him as he bum scooted across the sidewalk. A young mom with her toddler saw me out her window a few doors down and came to say hello. With the way her face fell when she found out Luke was 5 years older than he looked from a distance, I could tell she was looking for a play date. I must've been quite the disappointment because I never heard from her again. Reason #1 for our lack of attendance: 9 times out of 10 in our experience, people treat us. It's exhausting!
The Germs!! When you have a child with a compromised immune system, we pretty much live in lock down during the winter. Throughout the year however, the inability to control people's perceptions of how viruses are transferred, the antagonistic resistance to flu shots these things are the stuff of nightmares when your child is medically complex. It's not even remotely a point to argue with.
The Finances. I cannot work right now. You know it's interesting, I just put in an application with a foundation for Luke and it asked me how many days this year Luke has been in the hospital this year. Including long term stays and doctor appointments he's spent three months at the local Children's Hospital. For just health related reasons, he has on top of that missed two months of school. I just cannot work. Nick is the hero in our situation and works crazy long hours in order to help us make ends meet. To go out to church with Luke on my own means I wouldn't be able to participate in anything anyway.
Sensory Processing Disorder Luke's brain has an inability to understand and read the auditory world around him. This causes him a great amount of stress. How fair is it for me to put him through that? To say that he'll get used to it, indicates a lack of understanding of SPD. What adds to the challenge is he has a very atypical version of this disorder.