Look at those bright eyes and that beautiful, toothless grin!

It’s so hard for me to write these words, to own this reality of my life on paper.  I’ve battled with the decision to blog the details of my journey with Cardon for so long. I would never want to betray my beautiful little boy. But, I really want to share my authentic journey. I think my ability and willingness to do so does something significant. Not for the world at large, I’m not that much of a narcissist, but for me, my family, my heart. . . is that simply a form of narcissism in disguise? I sincerely hope it’s not.

Sometimes it’s hard . . . mothering a child like Cardon.

Hard in the way that pushes you a hundred miles past your breaking point and then a hundred more, only to wake you up, in the middle of the night, to start the process all over again.

Hard in the way that shoves all the preconceived notions of your younger years about parenting (and discipline, and education, and medication, and nutrition, and meditation, and love, and hate, and world peace. . . forcryingoutloud!) right back down your ignorant little throat. They taste much worse on the way back down; I’ll tell you that much.

From the outside, looking in, it’s impossible to see. Even our very closest friends and family are oblivious to the specific challenges we face. Until you’ve lived it, day in and day out, until you’ve seen all the faucets, experienced all the complexity, it’s simply impossible for even the most well intentioned, empathic friend on Earth to fully understand.

My son is special. Remarkably so. It is impossible to explain just how dear, and brilliant, and passionate, and charming, and perfect he really is.

He is a born Creative. He is, beyond argument, artistically gifted in every.single.way. He excels at math, and he is more giving and generous than anyone I have ever met. He is tender and loving, genuine and kind, trusting and sincere.

There is not a mean or malicious bone in that solid little body. Not a one.

He makes a room bright, just by being in it. You could never find a better friend the world over.

Cardon makes the world seem as if anything were possible, and for a soul like HIS? I really believe that anything is. . .

But there are storms. Storms that bring out every one of my weaknesses, until they are blaring in my face, threatening to swallow me whole.

Sometimes, there is so much screaming. Top of the lungs, screaming. The kind of screaming that would be bound to make the back of his throat burn and his eyes hot from the pressure. I do my best to calmly breathe my way through the noise.

Sometimes, he simply can’t let go. He becomes so rigid and completely fixated on a certain plan (or pattern,or expectation) that there is NO way around, only Hell to pay for the rest of us. I do my best to breathe my way through the high water.

Sometimes, when things have spun completely and totally out of control, I can’t find my breath. I get so angry and frustrated. I feel like my heart is going to explode and my lungs are going to collapse as I try to breathe my way through it.

NONE of this is Cardon’s fault. And NONE of it is mine. He is a good son. And I am a good mother.

For such a long time, I worried that my speaking openly about Cardon’s difficulties ran the risk of making him seem wrong, broken, somehow damaged. He is not any of those things! Cardon is BRAVE and BRIGHT! Cardon is more capable than anyone I’ve ever met in my life.

But, at least for a time, Cardon is going to struggle. Certain things are going to be difficult for him, no matter what.  He is going to have to learn his own special way to move through these challenges, academically, socially, emotionally. It’s these realities that give me the courage to discuss this openly.

Right now, I have the power to help my son navigate these unavoidable challenges in a healthy way. Right now, I have the opportunity to give my son something that is more valuable than anything else I could ever give him: unconditional love and a confident heart.

And if my goal genuinely is for Cardon to learn to confidently advocate for himself, and it IS, then I have to be ready to release any and all taboo–right at the starting gate.

As I write these things, I believe in my heart of hearts that I am doing my part to offer normalcy to Cardon (and others like him). At the very least, I’m offering some normalcy and understanding to our crazy life. Our crazy life that I truly would not have ANY.OTHER.WAY.

Eventually, I have complete faith that Cardon will learn to stand solidly on his own two feet. That remarkable spirit, that has ALWAYS been too big for his little body, WILL find a healthy equilibrium. We’ll all learn to courageously navigate these challenges in a healthy way, and his spirit will be even MORE robust and wise from the journey.

The reality is that our challenges together, (all of us: Cardie, me, Richie, Raleigh, and Lincoln) bless us all far more than they hurt us, and in all the ways that really matter. There is more to be learned, more about patience, true love, loyalty and humility from this little spirit than we could find anywhere else, not in a million years.

Cardon blesses us all more than words can say. I feel so deeply honored that God has entrusted our family with a child as exceptional as him.

I love you, Cardon Gregory. With all of me. I do.


Post Script: To those of you who do understand the intimate details of parenting a child like ours, from one “special mommy” to another, I offer my most heart felt and genuine namaste.

Post Post Script: I know. Parenting is hard for all of us. LIFE is hard for ALL.OF.US. We each have our own, insurmountable challenges that absolutely push us beyond ourselves. I’m not sharing this to belittle anyone else’s journey. I’m simply sharing a part of my journey that makes my life particularly challenging. There’s no comparison here, no weighing in of battle wounds. Only words.

One thing about the desert? It makes you feel small. Way out here, right in the middle of nothing, I’m tiny and insignificant. My roots just can’t seem to break this impenetrable earth.

Last night it rained. The Heavens cracked WIDE open, and down came the rain. Heaven poured down miraculous relief—both for the parched earth and for this homesick island girl. Something in the rain, and how it dumped from Heaven, helped me to grow, to gain my footing, to strengthen my brittle roots. Water everywhere. An abundance of relief.

This journey with Cardon is proving to be more difficult than I had anticipated (and that’s saying a lot). I’m good at rolling up my sleeves and getting to work, and I expected this experience to be just that, WORK. I just don’t think I’d properly gauged how exhaustive the process would be. I didn’t have an accurate measure of just how chaotic (and maddening) life would become before things would start to get better. School starts Monday, and I had envisioned us being at a very different place by then. But here we are. And there’s not a thing I can do about it. That’s the hardest part. I have ZERO control. No control over when doctors and specialists will be able to see us, no control over heart arrhythmias or borderline EKGs that halt planned treatments, no control over dyslexia diagnoses or literacy centers who won’t return phone calls, no control over uncooperative special ed coordinators at elementary schools. I just feel.so.small. And the problem here is starting to feel.so.huge.

But last night, I was reminded that the rain will come. It will, and it will bring sweet relief and an abundance of clarity, capacity and joy. I know that it will, because I know that God is mindful of me, yes, even me. . . tiny and all alone . . . in the middle of the great big desert.

For now, we’ll seek shade in his grace as we wait for rain.