It made me think of Nathan.

When Nathan was little I thought for sure, by the time he was 3 years old, he would be doing more. I figured by 3 he would be walking. As he got older I figured by 3 he would be sitting. As he got even older I figured by 3 he’d have head control. Now he’s almost 4 and I don’t plan for anything anymore.

Sometimes I wonder – how is this possible? We’ve done so much. We’ve done all the right things. Traditional therapies, alternative therapies, diet – you name it, we’ve done it.

Conventionally, the answer is somewhat simple – too much damage. Holoprosencephaly alone is pretty devastating. Then there’s damage from hydrocephalus. And damage from untreated meningitis.

Spiritually, the answer is becoming clearer and clearer.

Would the journey be different if I’d been able to “fix” Nathan? Absolutely. Quite frankly, I think I would’ve missed the point altogether if things had “worked” for Nathan and he’d gotten better and better with treatment.

The journey would’ve become all about “how to fix your brain injured child.” I would’ve put all my energy into fixing him more and more, and into helping others use what I’d discovered to “fix” their kids. It would’ve been about external, not internal, change.

However, since nothing has worked substantially, the journey is quite different for me. It’s all about spiritual and emotional growth.

The journey for me is now all about unconditional love and acceptance. It’s all about relying on God instead of myself and others in the physical plane, about learning to value every single moment, about learning to see beauty in the world as it is.

I’ll give you an example. I used to get very mad at Owen if he didn’t act the way I thought he should act. I expected him to do things a certain way, and if he didn’t do them my way, I’d get extremely upset.

Thanks to my experience with Nathan, I’ve learned to accept Owen the way he is, and to value everything he DOES do, not what he doesn’t do or what he doesn’t do my way. I am grateful for him just the way he is, even though he doesn’t spend all of his spare time researching therapies, even though he prefers to let me make all of the decisions, even though he sometimes doesn’t agree with some of the therapies I want to try. I am certain I would’ve never gained acceptance of Owen exactly the way he is if it hadn’t been for my journey with Nathan, without being able to “fix” or even substantially “improve” him.

The other day my dad asked me, “If you accept Nathan, why do you keep going with all these therapies?” I keep going because it’s not about me – it’s about Nathan. I have accepted him, and continue to learn deeper and deeper acceptance every day (acceptance isn’t a static goal, it’s an ever changing, ever deepening feeling).

But my acceptance of him doesn’t mean that I should give up on giving Nathan the opportunity to gain skills that will improve the quality of his life. As I have mentioned many times, every tiny inchstone gives Nathan a better quality of life. The fact that he can consistently roll from back to side means he can chill with his hands in his mouth, a position which he loves. Now that he’s saying “yeah” and “mo” he can get his needs met more appropriately. Even though seen individually these gains are not much, when you look at them from the point of view of Nathan’s life – and the fact that he can do so little – everything that he CAN do means so much!

Twice in the last week I have dreamed that I’ve seen Nathan walking. In my dreams I jump for joy. It was a beautiful feeling. Is this a possibility for Nathan? I don’t know! Maybe he IS broken beyond repair. Maybe he is not. Either way, we both continue to learn. To me, this is the most important thing in life – continuously growing and changing.

Post Update

Having re-read this, I realized that I can summarize this whole post in a sentence: From a spiritual point of view, which to me is what matters most in life, I am glad that progress with Nathan has been so slow as it has taught me so much about love and acceptance! If progress had been fast and easy, I would’ve missed out on so much! Sorry to be so wordy, most of the times I figure out what I want to say by the process of writing

(At his dad’s birthday party this weekend).

And so are you.

You are who you think you are. So why not think of yourself as you want to be?