Pride, Sorrow and Guilt

On Saturday I thought I would burst with pride. Nathan’s hippotherapy center had their annual banquet/fundraiser, and Nathan was picked as one of the 5 riders to do a demonstration. They work with over 100 kids but they chose Nathan to represent the ranch!

I can’t begin to describe how proud of him I felt. From the moment he rode on to the arena and gave everyone his huge smile, I melted into a puddle of tears – tears of pride, tears of joy for how far my little angel has come. He was so wonderful up on that horse, with over 800 people looking at him. He understood this was a special event and he held up his head so well, he sat up on that horse, and rode with so much confidence and pride.

And I know that those 800 people that witnessed Nathan’s pride were touched. I know Nathan reached deep in their hearts and shared some of his love and joy with them. And I couldn’t stop crying with pride and wonder at the amazing little being that we are so blessed to have in our lives!

Afterwards we had SO many people come up to us and compliment us on Nathan. He was the star of the party. He stayed up with us at the party until 11 pm (he’s usually in bed at 8:30pm), he knew it was a special night and he wanted to enjoy every moment of it.

My camera broke so I have to get the photos and videos from my mom, I will post them as soon as I can.

Riding high on my joy and pride, I was devastated to check in on one of the children with Nathan’s condition and find out that he had passed away last Wednesday. I can’t begin to describe how painful it is when you find out that another miracle child living with holoprosencephaly passes away.

Here is a video tribute to Jame’s life.

James wasn’t much younger than Nathan and I have been reading his blog since his birth. Like Nathan he was such a strong little man, he was a fighter who had surmounted so many odds and was thriving despite the odds. It literally broke my heart.

And of course it makes me wonder, what if one morning I go to pick Nathan up from his crib and find his lips blue, his little body lifeless? What if I wasted all this time worrying about his future, running around from therapy to therapy, when I should’ve been enjoying every breath, every minute he is with us?

I spent so much of Nathan’s first year afraid that he would die. It was a subtle, unconscious fear, one that I didn’t even know I had until he was one. At that point I confronted my fear and decided to let it go, I didn’t want to waste his life in fear of his death.

Then I spent much of Nathan’s second year afraid for his future. Since I had conquered my fear that he would die young, a deep rooted, unconscious fear of a painful feature became my hidden nemesis. Deep down I feared that he would experience a lot of pain and suffering in his future. So I ran around from therapy to therapy trying to get him as strong as possible while he is young to try and control and prevent suffering in his future.

In England I confronted that fear and decided it was time to let it rest. That I didn’t want to waste the present in fear of the feature.

And today as I cried and cried at little James’ death I realized how much guilt I’ve held in my heart. Guilt that I’m not doing enough for Nathan. Guilt at the time I’ve wasted by fearing his death. Guilt at the time I’ve wasted trying to control his future. Guilt that I am not doing enough. Guilt that I should be doing more for him. Guilt that he is not stronger, guilt that his head is not growing, guilt that he doesn’t spend enough time on his belly, guilt that I don’t spend enough time with him, guilt that I don’t work more so I can afford more treatments and therapies for him. Guilt if I do, Guilt if I don’t.

Today I feel Nathan is so special. Today I have a deeper understanding about his mission in this life. His mission is not to be normal. I know that now. His mission is to teach others about love, unconditional love.

But what is my mission? What is my role?

Is my role to facilitate his mission? Is my role to learn how to help Nathan so we can then help other parents how to help their children? Is my role to learn deep, unconditional love and accpetance?

What is the balance in all this?

Lately I’ve been investigating several new types of treatments for Nathan: Neurofeedback, Neurofitness, Acupuncture, Anat Baniel method, Hyperbaric therapy. I’ve been pretty excited about trying out these rehab modalities with him to see if any of them can help him. I feel like he has so much potential and if only I can get his brain to “click” so it starts rewiring his motor cortex.

But now I wonder…maybe I should just enjoy him? What if I waste all this time with all these programs with the motivation of preventing suffering in his future, when maybe he’s not meant to be here in the future? Maybe he’s just a passing angel, here to bless us for a short time?

And I hear the words in my mind….what if we do all these treatments with an attitude of love, fun and enjoyment? If we approach them as “fun” and think of them as games, then we’re doing both! We’re enjoying our time together while working on strengthening his body and brain.

If, instead of expecting results, we do all these treatments as a way of sharing our time together and enjoying ourselves, we would be integrating both goals. It’s the expectations that make the experiences difficult. WIthout the expectations the treatments would just be somethign else we do, like eating or going out.

So the balance between pride, sorrow and guilt is unconditional love and unconditional acceptance, peppered with a good dose of fun. And most importantly, an absence of guilt. Guilt is what destroys everything, even the best of actions are destroyed if the motivation is guilt, even if it’s deep hidden guilt.

And so today I will go to sleep with the baby monitor on extra loud, listening to my angels rhythmic breathing, grateful for his life, grateful for every moment that we have him with us.

PS. I still can’t sleep. I’m just too sad. Since I was a child I have always used writing to find a way through the muddle in my mind, to find a way forward. If you haven’t noticed most of my posts start in confusion and chaos, but by the end I am closer to clarity. But in this case even though I feel I got some insights, I am still so confused.

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