For those of you who have never been a parent of a child with special needs it's important that you realize the emotions one goes through are very similar to the grief process. There is never a time when you can say, 'I am completely okay with my child having these defects/disorders/struggles.' You may come to a place of acceptance for a time and then, out of nowhere, like a mac truck, the pain and sorrow will just hit. And the tears come or the muscle tension or a feeling of being overwhelmed and you wonder what in the world just happened.
Yesterday I was out for a run. It was a beautiful fall afternoon. Just lovely. I am happy, lost in my thoughts, listening to the rhythm of my footfalls when, from around a bend in the path, a little boy about Caedmon's age comes racing as fast as his legs could carry him. He's zig-zagging all over the place as his mom tries to reign him in and get him out of my way.
I smiled, I couldn't help it. He was cute, and he reminded me of my kids.
But then I was surprised by a deep pain in my chest. Something I hadn't felt in a long time. I started to cry, thinking about how that should be Caedmon, running as fast as he could make his legs move, jumping with both feet into the middle of puddles, chasing his brother and actually being able to catch him, not falling over when a breath of wind pushes him just the wrong way.
It's just not fair!
Why our son? Why Caedmon?
Why Asher?
A song started to play in my head:
This is not how it could be
This is not how it should be
This is how it is
And our God is in control
This is not where we planned to be
When we started this journey
But this is where we are
And our God is in control (Steven Curtis Chapman, Our God Is In Control)
I learned fairly early on in this journey that the more I held on to my little child-self crying, 'It's not fair! Why?!', the more miserable I felt.
But the moment I could accept that this IS. This is my reality. This is truth. That was the moment I could start to feel joy.
Of course, it sucks sometimes. It just does. And there are times when I don't want to accept it. But this is when I realize that I need power outside of myself so I can get back to that place of peace, of contentment.
It reminds me of Philippians 4:12-13:
I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry,whether living in plenty or in want. I can do all this through him who gives me strength.
And because of this, I can look at my beautiful son and see an amazing, thoughtful, helpful, considerate, loving boy and not the defects or difficulties.
And I can walk through this journey with him, learning with him as we walk through all kinds of new things together, and I can get caught up in the magic of even the most mundane of things. Because my focus in on now.
This is how it is.
Caedmon's gait analysis |
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