So, when I finally took Haylie home from Riley Hospital, she was just over a month old. She had survived spinal meningitis, though it left her, according to our doctors, “brain damaged” and at risk for multiple “disabilities” in her life ahead. What they told me is that she could develop cerebral palsy, learning disabilities, motor delays, that she would always be at high risk for seizures, and would likely spend the rest of her life medicated for them. Not the kind of news a mother wants to hear. Still, these ambiguities sounded better, much better, than what my friend Mei heard when she took her baby, Adele, to the neurologist at just two months old.
Adele was diagnosed with cerebral palsy and “brain damage” so severe that doctors told her parents that she would never be able to see, never hear, never walk, never talk. They said that Adele probably wouldn’t even live very long.
It turns out that Mei and I have a lot in common, despite living oceans away in different cultures. The common thread among families that find and pursue the programs at The Institutes for the Achievement of Human Potential seems to be that we all have an inability to believe in such hopelessness. So, just like I eventually did, once Haylie’s problems got big enough to make our lives miserable (more on that later), Mei and her husband went searching. They found IAHP and Adele has been on a program of neurological organization ever since, making steady improvement.
Adele is now five years old, and I want to ask you to use careful eyes when you look at her. You might be tempted to see a tiny, fragile, brain-injured girl. Many people find it so painful to behold such children that they look away all too soon. But, I’m going to ask you to take a deep breath and to look closer.
Can you see it, the light in her eyes?
She is superbly healthy and strong (the child who wouldn’t survive for long). She is learning to feed herself and to crawl (the child who would never move at all). She understands everything spoken to her (the child who would never hear). She reads at a college level, with her eyes (the child who would always be blind). Remember, she is five years old. Just let that settle in for a minute.
And just look at that laugh! She has a lot to be happy about. So, let’s keep any impulse to feel sorry for her, or her parents, in check, ok? This girl, she’s a powerhouse of wisdom.
You see, Adele is a bit of a philosopher. She writes poetry. Her parents learned a technique called Facilitated Communication at The Institutes that allows her to dictate her thoughts. So, though she has not advanced in her respiration enough yet to be able to coordinate speech using her vocal cords, she is by no means voiceless. And she uses her powerful voice to express her intelligent thoughts, her love for her family, and the beauty she sees in our world. Here’s one of my favorites:
What Do You Hear
A child crying?
A child laughing?
What do you hear?
I cried, I laughed
I cried for help for attention
I cried longing to be understood
I laughed for I am loved
I laughed for all the attention
God gave me my voice
Not to utter only a word
But to laugh when I am happy
To cry when I am lonely
What do you hear
What do you hear
Five years old, expressing herself with such eloquence.
How many children like Adele have we passed blindly by in our lifetimes and believed our assumptions about them? That they are hopeless. Vegetables. That they can’t understand anything. Can’t do anything. Will never amount to anything. That they are suffering. How often do we limit what we believe is possible based on what we see? But do we really? Really see? Can we perceive outside of our own expectations? What if our expectations have been way too low?
Let me be clear – if Adele’s parents had believed those doctors, if they had followed their advice to put her away somewhere, then eventually, of course, those experts would have been right. She never would have learned to see, to hear, to read, to write poetry, to begin to move and crawl and feed herself, to make her impact on the world. Those well-meaning professionals don’t tell parents this devastating news because they are malevolent people. No! They are simply sharing what’s true in their experience.
But Mei and her husband, like me, like hundreds of other parents before us, felt that something else must be possible and they followed their instincts until they found it. At IAHP they learned how to provide the specific stimulation and opportunity that Adele’s brain needs to develop. It’s a miracle, for sure. But it’s a miracle backed by a lot of consistent work aimed at addressing the orderly way in which the brain grows. It is work that can’t be done unless you have the eyes to see what’s possible, the heart to resist drowning in despair, the courage to go down a path less traveled and little understood.
The difference between “brain-injured” and “brain-damaged” is just a word. A single word. One of those words (the former) implies that repair is possible. The other one (the latter) implies a state of permanence. It’s all a matter of how we see it.
The truth is, that in our world obsessed with labels and symptoms, doctors want to provide diagnoses that have specific-sounding names pointing to the exact functions lost because of a hurt brain. And then, we end up believing that children who have hurt brains acquire all these different diseases. But this is not at all what is happening. What’s really happening is that when a brain gets hurt, it has trouble doing some of its jobs. The specific jobs it struggles to do depend upon where the injury is in the brain. And, the more hurt it is, the more trouble it has. So, there is a spectrum of brain-injury:
Kids who are so hurt that they can’t move or see or hear are on the extreme end of that spectrum and it is pretty obvious that they have a brain-injury. These are kids like Adele, who get labels like cerebral palsy and pervasive developmental disorder.
Somewhere near the middle of that spectrum are kids like my daughter, Haylie, who are capable of many things but struggle to do them as well as their peers. These are kids who are often highly active but disorganized. They get labels like autism, dyslexia and ADHD.
Then there are the kids at the mild end of the spectrum who are so barely hurt that no one can really understand why they struggle to read, to learn, to remember, and to behave well. They usually get labeled as lazy or stupid and end up in a lot of trouble.
And, there are kids at every place on this spectrum in between and they could all benefit from a program of neurological organization. Unfortunately, at this point, our society doesn’t see this situation so clearly and therefore, is not so good at fixing it.
Thankfully for Adele, her parents do have clear eyes. They see the real her – a brilliant girl who has been severely injured in her midbrain. A girl who is, thanks to them and the staff of The Institutes, on the road to recovery. They understand that she doesn’t creep and walk and run just yet because the pathways from her brain to her limbs don’t function efficiently enough to send messages about muscle contraction and relaxation, so they diligently work to give Adele all the stimulation she needs to feel her limbs better and the opportunities to move unrestricted on her own. They understand that when they get her moving, and get her respiration where it needs to be, that her vocalization and her language ability will get better. They don’t assume that she is less intelligent for these problems. They understand the cause of them and they are treating Adele’s brain so that it can heal and perform all of its functions better, day by day by day. They have faith that in time she will be able to speak, to crawl, and one day, even to walk. Their faith and their courage and their commitment blow me away.
Reading through Adele’s book of poetry tonight, I get goosebumps. She writes:
I am the moon that is emerging in darkness
Giving light to the blind
Giving voice to the voiceless
Giving hope to the hopeless
Giving laughter to the universe
I will continue to shine…
Indeed. Shine on, Brave Adele! As you get well, you show others what can be done. As you tell your story, you help others to understand. Let’s keep spreading the word, shall we? Let’s help the world to understand brain injury and what can be done about it.
Here’s to you and your amazing parents! I’m cheering for you every day!
With so much love,
P.S. Adele also has an amazing sister who bakes cupcakes to raise money for her treatments at IAHP and the cost of travel from their home in Malaysia to the US. She’s famous now. She’s just been on Cake Boss! Go check her out at https://www.facebook.com/chefleahwithabigheart/
I know, I know, too much awesomeness in one family…doesn’t really seem fair, does it?
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.