I listened as she spoke of her observation on the playground – watching as her son wanted desperately to interact, doing his best to overcome his challenges and impulses. The other kids seeking his attention and confused by his inability to respond in the way they expected. I felt as though she was describing my son, Noah.
A friend from New York called the other night, she too has a son with AS and lives in Brooklyn. We’ve only ever talked on the phone, but we’re clearly kindred spirits. We trouble shoot parenting issues, talk babies and children, dote on how thankful we are for our husbands, but mostly, we understand each other’s lives, the routines we each live and the challenges we face in raising a child with a neuro-genetic syndrome.
We briefly talked on grief and the process that we as parents have gone through after the diagnosis of AS. I’m always interested to hear how other mom’s have either dealt with it or are still in the process.
It was a Thursday when I received the call from his geneticist. She shared the news and compassionately listened as I asked questions. That afternoon, we escaped to Canada for a few days to enjoy each other. I grieved a total of 6 hours. I’m not sure if this was a healthy choice, but I knew that if I allowed myself to go too deeply, it would turn to pity, and bitterness isn’t far behind. I stayed out of the pit. I still have to stay out of the pit every day.
When we’re at playgrounds, playing with friends, or at the grocery store, I am aware of the differences. These moments can elicit a feeling of loneliness which is associated with grief – but in those moments, I have challenged myself to get to the root of why.
My grief was driven by a deviation in how I had anticipated my son’s life and future. Nothing actually changed after the phone call. He was still the same Noah. We were already aware of the challenges he faced and would probably face as an adult. But MY expectations were no longer valid.
I’ve decided that in my position, I can fight for normalcy. I can facilitate friendships for Noah, have him attend public school in an inclusive classroom, and keep him tame in the grocery store so as to not stand out. I would be doing these things because I felt I “should”, they are acceptable and normal. There is nothing innately wrong or faulty about any of them. My other choice is to deviate from the norm by creating an home/community based educational environment that is enriching to him, (based on how he best learns and engages) allow him to interact with his peers at the playground/church in the ways he wants to (even if it’s atypical), and give him freedom to express himself and his frustrations at the grocery store. Who cares if somebody is watching! (plus, I don’t know that I can actually tame him anyway).
Having a son like Noah gives me a free pass to not be normal, if I so choose. And I choose!
There is a weight lifted off of my shoulders when I realized I had a choice and when I removed myself from the box that society creates for us – that WE create for us. I can guarantee that I will not raise Noah in a traditional setting, not because of AS, but because that is how I feel led – AS just gives me the motivation to pursue it with less of a fight or kick back from others.
I was talking to Matt about this and shared with him that the way I feel about the idea of normalcy in raising kids is similar to how I feel regarding my faith. Jesus calls us to not conform to the ways of the world (Romans 12:2). There are aspects of my heart and faith that make me feel like a stranger in a strange land. I know my home is in Heaven and at times, it is a burden to abstain from the things my earthly heart wants to do out of normalcy. Not like smoke joints and steal from the store – but the subtle things that I want to do because my friends or acquaintances do them. (nothing dirty or deceitful)
Being a Christian gives me a free pass to not be normal, if I so choose.
I absolutely choose.
It’s freeing to feel the weight of the box fall from around my neck, for my arms to gravitate towards the sky, as my spirit ascends to the luxury of my provider.
God, thank you for giving me a free pass from the ways of the world. While your call carries responsibility and heart, I need only to rely on You.