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In the Moment

When Ry was born ridiculously early, I spent a lot of time asking why. I begged for answers. Why did this happen to us? Why must he suffer the way he did? Why did we have to go through this? Had we done something so wrong in our lives we deserved this punishment? When Ethan was diagnosed autistic, I found myself in almost exactly the same place. In the moment, all I could do was wonder, and cry out.

I’ve learned that time puts a perspective on things. I may never know the why of Ryley’s prematurity. I may never understand the reasoning behind Ethan’s autism. I no longer think we are being punished somehow. In the moment, you ask why. Looking back, you can see where it has led you.

Bad things happen. Terrible, horrible, awful things happen to amazingly good people. Thinking back on Monday and the events in Boston, it is plain to see that bad things happen. We don’t understand why. We beg to know why. What is the reason? What is the lesson? Did we need to learn a lesson?

As I learned with my own life, if you look, you can see the good coming out of the horrific early on (most of the time – there are things that have happened to friends and family that I still, months and years later, still wonder why).  While Ry was still in the NICU, I found myself tempered. My perfectionism put in its place (a lesson that would need to be re-learned). I was able to really see what was really important in life, as opposed to what I had allowed to have importance.  I learned a lot about myself. I learned a lot of medical stuff. I learned how to care for my infant under the watchful eyes of doctors, nurses, and the machines that kept him alive – a safety net of sorts. I have been led to some of the greatest people I know simply because of Ryley’s prematurity – brave women and men who have faced the NICU and who continue to reach out to others who may be hurting even in the midst of their own pain and grief.

It was hard to see the good in the early days after Ethan’s diagnosis. But even 18 months later, I can see how far we’ve both come. We *will* make good come out of this. Already I have learned to be a better parent, not just to my autistic child but to my neuro-normal (hah!) children. I am calmer (most of the time). I have learned to truly appreciate sunshine days with my son. I have learned to focus on his abilities rather than his deficiencies. I have learned there is much to be heard in the silence his sensitive ears prefer.

When my sister was diagnosed with cancer the day my youngest was born, I found myself back in that place of asking why. Here was this amazing person who gave so much to others, who loved so fully, who knew that laughter was the best medicine. When she passed away five years later, it was hard to see the light. She has touched so many lives in the way she lived with cancer, never letting it win even in the end. She taught me grace. She reminds me, even now she’s gone, to focus on my babies, on my family. When I am fearful, she reminds me to be brave. When I want to give up, I hear her whisper to me, “Carry on, you have this.” How we look, where we live, how much money we have doesn’t matter in the end.

In the moment of horrible events, the why’s are loud. I am trying to be better at looking around at what good I can make of it earlier rather than with years of perspective.

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