This post is dedicated to our children; Charity, Dan, Devyn, Aryanna, Eythan and Jazmin. Thank you, for being your brother’s keeper💗
Have you ever been to a movie that turns you into a blubbering mess? If your a man, have you been to one that caused you to swallow your Adam’s apple a hundred times? Because men don’t cry at movies, right…or they pretend not to.
I have learned the secret to surviving a movie without needing a kleenex or holding onto my husband for dear life…
I had bought a beautiful soft angora scarf one winter. I wore it with my long coat since we have long, cold winters. One winter’s night my husband, Vance, and I went to see a movie that took place back in the Wild West. Partway through the film, they were getting close to being scalped, hung over a fire in a leather bag and cooked to death. I covered my eyes with my scarf but I still wanted to watch, so I looked through the tiny loops of my scarf.
Unbeknownst to me, I was slowly stretching the loops till I had a hole the size of a baseball in my new beautiful scarf. I was mortified. But it kept me off Vance’s lap and in my own chair. I’m a huge chicken when it comes to scary movies.
Yesterday, after church we went down to the mall and had lunch with our son Devyn, then we went to the movie, Wonder.
So, this is just a spoiler alert ahead of time.
August Pullman is about to enter grade five. He plans to go to school wearing an astronaut helmet on his first day to hide from his new classmate’s rude stares. He has a face that looks different than anyone else’s. He was born with an unusual looking face and has had over twenty surgeries to make him look as normal as possible.
You will watch the movie from a different perspective than I will.
Most likely you will see it as a movie that teaches us to value and accept people who are different and to love them from the inside out.
I saw it through the eyes of a sister who stood back and watched her brother take up all her parents love and time.
Olivia is August’s older sister she is also her brother’s keeper.
On her fourth birthday, she wishes for a baby brother. Olivia was the only child of two loving and doting parents. She was the centre of their universe. When August came along, he became the SON the world was revolving around. She describes herself and her parents as the planets that circle around August.
Julia Roberts plays Isabel, August’s mother. She homeschooled August until grade five then declares to her husband Nate, played by Owen Wilson, that it’s time for August to face the real world.
Nate is panicked, and so is August.
On his first day of school, Nate convinces his son he has to go without the astronaut helmet he usually wears in public. Olivia is standing outside the school gate with her parents as they all watch August walk towards the staring kids on the playground.
Olivia is worried about the brother she loves and how his peers will treat him.
At one point in the movie, there is a scene that reveals Olivia’s thoughts on being the only sibling to a brother who has captured her parent’s full-time attention. This was where I put myself in the shoes of my own children as I watched the movie.
My scarf was there for me as I wiped my eyes and nose.
We have four children younger than Kyle, our son with severe autism. He was the SON our family universe spun around. Everything we did or didn’t do was decided by autism.
What we ate, when we went to bed, when we woke up, where we went, when we did vacations ( or even if) and how we interacted with each other and the world outside our family.
All the freedoms you had as a family we did not have. We were not free.
We were imprisoned by autism.
Our whole family was locked in one giant cell together. We created a life within the four walls of the cell we called home. It was an unpredictable life, filled with banging walls, flooding toilets, dishes flying and crashing, and feces smeared throughout the house.
Charity, Devyn, Aryanna and Eythan lived in a locked down world. Each of them had a subcell within the larger cell. They key-coded into their bedrooms and locked everything that was precious to them behind that door. Sometimes they left something on the kitchen counter, and if they weren’t fast enough to chase Kyle down, they lost their possessions down the toilet.
When our youngest Eythan was in grade twelve, we missed seeing him in the city’s high jump because we had a meeting we couldn’t cancel about Kyle’s health. Our daughter Charity went instead to cheer him on.
“He won!”, was the text she sent.
Not because he won but because I missed seeing him win. I wasn’t there at this vital moment in his life.
I was devastated.
How could we miss something so important in our child’s life? I saw the photo’s after. But it’s not the same. We failed at parenting over and over. Not because we were bad parents but because autism usually grabbed the parents and shoved the kids aside.
Our kids realized we cancelled life regularly. If Kyle’s staff is sick or short staffed we have to cancel plans with our kids, friends and family. If Kyle had twenty-four-hour care, it would be different. He would always have staff, guaranteed. We refused the offer and went with part-time care, already knowing this.
Why you ask?
Because of our kids. They have spoken their feelings to Vance and me about this crazy life they were raised in. It has impacted them significantly. Do they ever wish we didn’t have autism? Of course, they do! We wouldn’t be human if we all said we didn’t.
Well-meaning friends and family have told us we should have institutionalized Kyle for the sake of the kids. Maybe they were right, we will never know. But the kids decided to put themselves in Kyle’s shoes and ask: if they were him, where would they want to live?
So Kyle lived at home.
Our kids sacrificed a normal life for their brother. They centred their lives around him and stood back many times and put their own needs aside as we met his immediate ones that cause significant destruction if not met instantly.
Charity told me a few months ago that she felt a terrible sense of guilt when she moved out after she married Dan. She felt like she had abandoned us to autism and she was moving on to a peaceful life.
Back then I was at home ecstatic for my daughter. For the first time in her life, she lived in a home where she was the centre of the universe. Dan’s world. God blessed her with a husband who we couldn’t even have thought was possible. He doted on our daughter and gave her everything she had missed out on.
When Eythan was getting married this summer to Jazmin, our whole family couldn’t attend. Kyle stayed at home with his staff while we travelled to Sudbury for the wedding.
My heart was heavy. Why couldn’t we be like a normal family who has everyone in the family photos? One member was missing. A son and brother we loved.
But something beautiful happened, we spent the whole day focused on our son and our new daughter. We had an autism-free day and not for a second did Eythan have to share his shining moment with autism.
He was the centre of our universe for that one day.
Eythan is now married to Jazmin, who loves him with all her heart. After he had gone to Sudbury to get Jazmin from the airport this week and they had been home for a day I texted Jazmin, who had been in Arizona for cancer treatment. They hadn’t seen each other in three weeks.
I’m glad your home safe and sound. I’m sure Eythan is very happy to have his wife back home.
Jazmin texted me back;
Yes 🙂 and I’m very happy to have my husband 🙂
I have a scarf around my neck as I am writing this. It comes in handy when a mom is crying. These are happy tears. My son lives with someone who wants to make him the centre of her universe. She will give him something we never could.
That is a gift from God to this mother.
Jazmin is an answer to our prayers. Dan is an answer to our prayers. Are their marriages perfect? No. Like every couple, they have their ups and downs, but they love each other.
Our children are no longer living in cells.
They are free.
But for some crazy reason, they keep coming home, back to the jail where autism lives and is the centre of the universe. Where they are their brother’s keeper.
This is home. This is love. This is grace.
They say home is where the scarf is…I mean heart is💗
Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres. 1 Corinthians 12:4-7 NIV