Being a parent of a special needs child brings unexpected joy

Being a parent of a special needs child is a journey that I had no intention of ever going on. It is exhausting, heart wrenching, full of disappointments, etc. But the one thing I didn’t expect is how much joy comes out of it, too.

I’m not just talking about the joy I get when my son accomplishes something that comes so easily for other kids but I know he has worked, tried and cried to do for a long time. When you have a child that is developing “normally” you barely have a chance to really think about how amazing those seemingly little accomplishments are. Think picking up a piece of cereal between your two fingers and bringing it to your mouth is easy? Well, it is if your brain hasn’t been damaged. Let me tell you, the amount of hard work and determination that is required to rewire your brain is outstanding and amazing.

But that’s not the joy I’m talking about. I’m talking about the joy out of just living.

I read this awesome book called The Power of Now: A Guide to Spiritual Enlightenment by Eckhart Tolle many, many years ago. I was completely moved by the book and set out to live a life living in the present moment… but that didn’t last long. There was so much to look forward to in life. I always enjoyed working towards some future goal.  When I’d achieve it, I’d move on to the next and the next. I always felt that those moments of achievement or adventure were those Now moments. But they weren’t and it wasn’t until I began this journey that I realized how important living in the present moment is.

When your child “is not a chart,” as one of Max’s therapists reminds me of, and is developing on their own timeline, you have two choices: be in the moment or not. Not being in the moment is probably the most natural state and it is definitely where I was when I began this journey. I was always thinking about the future, what will school be like, where we’ll go on vacation, what we’re doing next week, heck, what we’re doing tomorrow. I rarely just lived in the moment. Of course, when it came to thinking about Max, I definitely couldn’t just be in the moment. Will he ever walk, will he ever talk? Will his life be normal? Will he ever get married? Will he ever know what its like to be in love or be loved? Will he be happy?

Then one day, a switch turned on (I can’t pinpoint the moment but it did happen) and I started looking at where he is at the moment. And I realized, it doesn’t matter if he walks or talks. Who’s life is actually “normal” anyways? I’ve seen my fair share of marriages ending in divorce. But it was when I started thinking about those last questions that really made me think … Will he ever know what its like to be loved?

I realized that he knows it already. I see it in his eyes when he looks at me. I see it in his eyes when he looks at his brother as his brother leans over to give him a kiss or hug. I see it when daddy picks him up. He knows what love is and he gives it back.

I was so worried about will he ever be… that I never stopped to realize that he is. He is loved right now; he loves right now; he is happy right now.

Now is where I have learned to live (although I definitely hop back on the “what if” train from time to time). And living in the Now is a really good place.

When you live in the now, you learn to look at everything for what it is. You get to see moments that would otherwise pass you by. Its just like the old adage to stop and smell the roses. When you are so worried and focused on where you’re going, you never realize how amazing and wonderful life is right where you are.

Although I would’ve definitely preferred to learn this lesson another way, I am grateful that I have learned this lesson.

Posted in Cerebral Palsy, Parenting

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