Day 23: Inspiration

Today was another no-go for the meeting about the SPD testing. The OT is still out sick (if you are reading this, feel better!), so it looks like our discussion may be postponed until Friday.

Since I didn't have a meeting to attend, I was a bit unprepared to simply sit on my own. Usually I'd bring my laptop or at least a crochet project to busy myself while trying to hide from Simon. Instead, I neurotically checked my email every few minutes.. at which point, my mind wandered. I started to think about what I would write this evening, ("Day 23: Sorry folks, nothing new?," maybe give another cookie recipe?) and then I thought about the blog itself and what it has become. And then I started to write.

Since almost the first day I began this project, several people have been incredibly kind and sent messages of support and encouragement. They often site that they have found my writing about Simon, my family, and myself inspirational. I'm very touched, and I'm happy to think that in some small way I'm having a positive impact (if only for the space of a blog post). I'm also surprised, because while I find Simon's love and determination a constant motivator, I feel that what I do, and think, and write, are merely the natural reactions of a parent that loves her child unconditionally, as we all do.

So, let me share with you where I find my inspiration. Because, though I often wish I had no cause to be in the places and situations I find myself (like the PICU, and specialized therapy units, and special education classes), I also recognize that, from this particular vantage point, I have been blessed to witness an extraordinary amount of determination, compassion, courage, and love.

As I write this, I am watching a little girl work with her therapist to learn how to use a walker. She can't be more than five, and in some ways she reminds me of my Olivia. She is small and slight, with soft brown curls and a sweet face. On that face, she is wearing a look of such steadfast determination that it borders on ferocity. She's holding onto the sides of the wheeled walker, with her therapist moving backwards in front of her singing nursery rhymes and encouragement.

Each movement required for her to put one tiny foot in front of the other is slow and laborious and the product of great effort. Yet, when she makes it to the end of the hallway, and the therapist suggests that they take a short break to play, the little girl shakes her head vigorously. She wants to keep going -- she isn't ready to give up and get back in her wheelchair.

How much easier would it be for her to stay seated? To play with a toy, or watch a video? How much effort could she save herself? I can only imagine how frustrating and exhausting it must be to focus so intently to simply put one foot in front of the other with the only goal to make it down the hallway in a somewhat stark facility.

I wonder at her motivation. Does she even understand why she is here, why it is so important to move her muscles to build strength, and prevent atrophy? I wonder that she can grasp the importance of a concept that eludes many fully grown, able-bodied adults; that if you don't keep moving your body it will become your prison.

I wonder if she realizes that it is because of seeing children like her, that I keep exercising. Because of her, I am profoundly grateful for the simple miracle of being able to move my body at will.

I doubt the little girl thinks about any of this. She moves because her heart and will are as great as any athlete. She moves because her spirit propels her forward. Though she can't give voice to her reasons, it is enough for her to shake her head to tell us that she is not ready to give up.

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Another example:

A few years ago, after a particularly jarring appointment with the Orthopedic surgeon, Brian and I were in the elevator with Simon in his stroller, discussing what we'd been told. The surgeon had said that, in the future, Simon would need multiple surgeries to sever tight tendons, lengthen short bones, and, in addition, he'd need rounds of botox injections to tighten loose muscles. The goal would be to gain some mobility, but it mostly seemed that this Ortho was worried about appearances. He wanted to keep our son "looking" normal as he grew.

This was scary, and we were worried. I voiced the concern that it just seemed like too much to put a child through.

In the elevator with us was another mother with another child in a stroller. Like Simon, this child was wearing a t-shirt with a Sesame Street character (slightly damp from drool), and he was sucking on a pacifier. Unlike Simon, this child was ten years old.

His limbs were tiny, and his hands and feet curled in. His head lay to the side with a placid expression as he lay his cheek within his mother's caress.

"Excuse me," the other mother said, and our eyes met. "I couldn't help overhearing what you were talking about. I just wanted to tell you that we've done some of those things -- botox and surgery. Some things helped, but not all of it. I'm not saying you shouldn't try things, but -- don't listen to everything the doctors tell you. If it seems wrong to you, go with that. Remember that he is still a child, and you are his mother, and you need to do what you think is right. Always."

I thanked her, and asked after the health of her boy. She smiled and said that they were doing well. The little boy closed his eyes when she ran her fingers through his hair.

I don't think that I understood then what an impact her words had on me. How much she inspired me to remember that no matter WHAT the circumstances, or how "special" the need, my child is just that, a child. And that I, as his mother, am empowered to not only seek help, but to decide how much intervention is too much. To get second opinions (which we did), and to trust myself. She also inspired me in a more subtle way -- she showed me that no matter how much I feel that I am going through personally, I should make room to be compassionate to those around me that need my help. Even if I perceive their problems as less severe than my own, I should not judge, and I should be open to listening and to giving what I can whenever I can.

This lesson has kept me sane and balanced and grateful in so many circumstances.

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One last example, a recent one (I've got dozens!).

When Simon was in the PICU, on day three I was standing in the outside hall. Only two people were allowed in at a time, and I was giving someone else a turn to visit. As I leaned against the wall for support, another Dad came out to stand by me. His son was having a procedure done (you can tell because they close the curtains) and he'd been shoo'ed out, the way we had been when they'd given Simon a lumbar puncture the day before.

The dad looked at me and commented that I "looked rough." I tried to laugh and thanked him for the complement. I asked him how he was (a dumb question in the PICU, I know) and with a tight smile he said he was fine. He asked me where I was from, and I told him that I was lucky because I lived nearby. He nodded. He stared hard at the wall opposite us and said that his family was here from Colorado. His son has a rare bone disorder, and Hopkins was the only place that could help them. His boy was only 11, but so far he'd had 8 surgeries and more were needed.

Without looking at me, he told me that he owned a sports equipment store in Colorado, and though he loved it and it did well, he'd decided it was time to move. "It's too hard for my family, traveling for these surgeries. There will be more of them, and this is the best place, the only place to help my son. I can start over."

Here was a man in his fifties, who'd built a career and a life that he loved, in a place that he loved, and he was giving it all up. Starting over for the welfare of his little boy, and the love of his family.

Within this brief conversation I found the meaning of strength, and resolve. I was inspired by such courage and steadfastness and optimism. It helps me remember, when I feel sad about a sacrifice I've had to make - like canceling our trip to France this summer -  that I am by no means alone in letting go of my wants for the needs of my children. I know that to do what needs to be done out of love, will bring me more peace and happiness than anything else could.

Determination, compassion, courage, and love. I thought I knew what those meant before, but I never saw them so close, so magnified by circumstance. There really is such beauty all around us, and inspiration is within such easy reach if we are just open to it.