You Are Great and Limitless
As a parent I use this line of thinking with with my kids. It conveys wonder and empowerment all at the same time. And, from the parent’s perspective, can elicit a little bit of fear too.
What if you get hurt?
What if your wings aren’t strong enough yet?
My mom thoughts are, I am sure, the equivalent of the developing inner voices in their heads right now, either giving rise to their fearlessness, or to their hesitation and playing it safe. I don’t dare utter my fears out loud. I want them to live a life unencumbered by nonsense parameters and imaginary limits. I want then to have a healthy, open, kind, and compassionate inner voice. I want better for them than what I learned, and am now unlearning. And, despite my words and my encouragement for them, sometimes the message is heard louder when it’s not from your mom. I suppose, while it’s good for them to hear me and my husband encourage them, we are, of course, their parents. While yes, I say it because I am your mom and I love you, I must admit I see their perspective wherein the perception is, of course, your mom is going to tell you are great and limitless.
So, the story of the kid who I have never met, but who has helped my son spread his wings…………
The story starts with my son’s epilepsy diagnosis at four years old. Actually, after lots of tests and surgery it was discovered that it’s a rare inflammatory brain condition, affecting 1 in 500,000 and because he is atypical in his symptoms, he literally is one in a million. But I digress, this condition, from which epilepsy is a side effect, is not controlled on pharmaceuticals, is resistant to brain surgery, and basically – as per the experts at one of the best research children’s hospitals in the world – is “a really difficult case” from which improvement is unlikely. I don’t believe the doctors; I don’t buy that this is the best it’s going to get. And, while Aidan is in the room when the doctors tell us this, I pray that in his distracted state (either nose stuck in a book, or on a device frantically trying to achieve the next level in Angry Birds), that he truly hasn’t heard their statements. But, our subconscious is a tricky thing.
He has beat the odds. I hope what he hears is the doctors marveling at how healthy and well he is, despite an inflamed brain. I tell them, “we’ve worked with his nutrition.” Eyebrows raise. I tell them, “he has been under the care of a chiropractor since he was five days old. Surely, keeping his spine free of interference, and allowing his nerves to work with ease has something to do with it.” Higher eyebrows. And then, the two that make them laugh out loud, “we’ve worked with energy healing and have acquired access to CBD oil.” Laugh all you will, we’ve been tracking the progress. His seizure frequency is half this year, from what it was last year. And, last year it was half the frequency of the year before. And, this is all while having decreased the prescribed pharmaceuticals by half. They don’t believe this stuff works, yet here he stands as proof, and still they don’t believe.
But, back to the story. While he’s made these great improvements, he still has seizures from time to time. Despite being able to now stop some of them with focus and deep breathing (this is starting to be somewhat accepted by the doctors), he still has seizures. This causes some anxiety, surely for him, and affects his attempts to try new things. To spread wings. To be accepted into community programs.
This is the first year he has gone to a summer camp. He is 10. This is sad but true. Up to this point we were unable to find a camp that was prepared to take on the “what if” of a seizure. Despite reaching out to camps that said their staff was First Aid trained, I would get responses, like “we aren’t equipped,” or “we’ll take him if he has a support person with him.” It was disappointing, infuriating, and disgusting really.
This year we found a camp opening up their arms wide, as if to say, “yes, all kids should have a summer camp experience.” They were open and sensitive, and had me come in to address the counselors. I talked honestly about what a seizure looks like for Aidan, and what do look for and do. They were so great, they asked really good questions and the momma bird in me was nudging my little birdie out the nest with a little less trepidation.
Day 1 of camp: best day ever. A counselor walks up to my son – they haven’t met before, and he is not his counselor, – and says, “I had epilepsy too when I was younger. I grew out of it, you will too.” One exchange. One amazingly powerful interaction.
While I have many times told him he will be seizure free, and we are getting there, this one stranger, this one interaction has changed my son. His confidence has soared in these first two weeks at camp. His whole demeanor has changed. He’s come out of his shell. And yes, while we forge on with energy healing and the CBD oil, and see the positive changes, I am convinced that the power of a stranger’s words is what has propelled him from tentatively testing his wings, to spreading them and leaping fearlessly out of the nest.
Thank you Keegan! Thank you for sharing your story and profoundly impacting Aidan’s. Now, Aidan says “I can’t wait to stop having epilepsy,” instead of “I hate having seizures.” Huge shift! He holds his power now. My heart is bursting!
And, to my little bird, fly sweet one fly!