I recently celebrated my birthday, which is also the anniversary of the launch of this blog. It was the best birthday gift I ever gave myself – the platform from which to share what I know about the brain that has the power to help usher in a paradigm shift in the way we approach children with learning differences. More importantly though, I gave myself the permission to finally do it. I stopped waiting for someone else, anyone else, to tell me that it was ok to step forward and tell my story. It was time, and I knew it.
That was a few years ago now and I am loving the way my blog has expanded into a website that offers services to help more parents. I’m delighting in the talks I have with those parents who find me and the relief I hear in their voices when they learn that there is something that can be done for their kids. They don’t have to keep struggling. Lord, I remember that feeling.
Birthdays are ripe for remembering, you know. They’re portals into the past, and I find myself thinking now of a birthday morning (hold on…let me think…I’m ageless now so it’s hard to calculate these things precisely) twenty-five years ago. Yep. Twenty-five years ago. Haylie was two. She was asleep in her toddler bed in the tiny room that we shared in our downstairs apartment. I got up early to do my birthday ritual, tiptoed outside, and sat barefoot in the cool grass outside our bedroom window, beneath my favorite tree. I took a few deep breaths, felt myself rooted to this spinning earth, and gave thanks for all the blessings in my life. Becoming a mother was certainly top of the list. Having been thrust into single motherhood with a baby that almost didn’t survive meningitis at two weeks old, my life was a chronic sustained paradox state of gratitude and anxiety.
At two years old, Haylie was the bright gem and great challenge of my life, which had exploded into a deep and wholesome sensory richness I had never even imagined before. So, I named my gratitude with the tree as witness. Then I named my desires and breathed them out onto the wind. What I wanted, more than anything in the world at that moment, was to know that my little girl would be ok and to feel that I had a purpose. I wanted my life to have meaning and purpose. So be it, I affirmed, and I returned to that quiet bedroom inside where I found my young daughter in the midst of a seizure.
What the actual hell, Universe? And on my birthday? My bliss crashed down around me as the pain and helplessness of these terrible, mysterious episodes washed over me with despair.
It has taken me many years to realize what an instant manifestation that was. The path to satisfying my request was already unfolding right beneath my very feet. I just didn’t recognize it yet.
So, contrast that, if you will, to the moment at 1:30 am this morning when I was awakened to the sound of Haylie’s gasping that indicates she is beginning to have a grand mal seizure. I rose calmly, but quickly, and went to her room to use a rebreathing treatment that helps her brain get enough oxygen to all of its neurons, since this is the problem that the seizure, by nature’s design, is attempting to address. Since I understand her seizures now, I can no longer be afraid of them.
I sat with her in the stillness of the night, watching her beautiful, long, strong limbs rhythmically contract and then relax back into their slumber. I wiped her face dry of her saliva and re-positioned her head on the pillow. Pulling the covers back up the way I’ve noticed she likes them, I turned the light out and left the room without sneaking in a forehead kiss, since she’s made it clear that they’re just no longer welcome, even though she wouldn’t have even known. She won’t remember this.
The only clue she’ll have that she had a seizure, her first in many months, is that she will wake to find that her alarm has been turned off. I did that so she could sleep off the stress of the first big chemistry exam she took earlier this evening and finally get some good restorative regeneration to those incredibly hard-working and resilient neurons of hers. I returned to my own bed and slept well, knowing that nature is working on her behalf to create perfect balance in her ecosystem, as it always is for all of us. And I still have hope for the day when she no longer needs a seizure to achieve it.
Now, I look back on that desperate mom that I was twenty-five years ago, holding her seizing, gasping, shivering shell of a child on her lap in the early morning light, all alone in such terrible fear, kissing her cold, clammy, blue forehead over and over, hoping it would just stop.
Stop. Stop, dammit. I want my daughter back.
Nothing could have ruined that birthday more completely than thinking that all of my dreams and desires for my life, and the life of my precious child, were impossible and unreachable. That was still two years before I finally found the work of Glenn Doman and his team of child brain developmentalists, which ultimately changed the entire course of my life, set us on the path to Haylie’s wellness, and began to awaken in me the deep sense of trust I have in life by learning about the brain, how it evolved, and what it was capable of. I now teach about the brain.
So, what I know for sure is that the clarity and purpose I feel in my life today can be traced back to that moment, sitting on the roots of a tree at dawn, when I asked for something more. If I had realized at the time that I would have to live through all that struggle to be able to come out with something to give on the other side, would I still have made my request?
Who knows. But it’s done now. And here I am.
And the story that I am writing is as much for that mother that I used to be as it is for you. What I didn’t know back then was that every great story has many parts. And before you can get to the telling part, you have to live through the struggling part. Sometimes it really sucks. It’s lonely and hard and scary. But you have to keep going. You need to ask those painful questions so that you can, one day down the line, receive their beautiful answers.
For me, the answers now look like moments alone to write my blog while my happy, healthy daughter studies chemistry in the other room. She recovered much more quickly than usual today from her much-shorter-than-usual seizure and is back at it with the fierce determination and laser focus that she came into this world with. I know because I was there. When I took that first look into her deep dark universe eyes, I thought, “Woah.” Nothing has changed since then. Haylie is determined to earn a degree in nutrition science so that she can help birth a new paradigm of health care into the world. She had to live through her own struggle part before she could get to the sharing part. And she’s not finished yet.
And that’s my message for all of you. If you’re still in the struggle part, the confused part, the asking part, keep going. There is so much beauty on the journey to your telling part. Don’t rush through it. Don’t despair. Your kids are here for a purpose and who you are becoming as you live through the dark chapters is a part of that. Honor it all. Love it all in whatever way you can, in every way that you can.
I’m taking this moment to reach back to my past self with some of the wisdom she so desperately needed, the wisdom she helped me achieve, so that I can say to her, and to you, that you are in exactly the right place at exactly the right time and that the answers are coming. What’s most important is that you believe in yourself, and in your children. Trust yourself to see the path as it lights up in front of you. And trust that life will keep unfurling that path into the places you most need to go. You’ve got this.
With all my love to you and your courageous kids,
I began this blog to share pieces of the book I'm writing about my daughter's courageous march down the path from brain injury to wellness. It's the story of how one little girl overcame the odds, a long list of labels, and limiting diagnoses. I hope it inspires other parents to dream bigger by knowing what is possible.