Day 12: Memento Mori

We are officially post holidays, and the normal extra-curricular schedule of activities has resumed. Which is good, because today it meant I got to have coffee and a chat with a dear friend while our girls were in dance class together. M and I have known each other since we were stylish young career gals -- before husbands, houses and children. Ten years later, we're still stylish, just a bit more seasoned.

As long as I have known her, one the many wonderful things about M, is that she is an amazing listener. We haven't seen each other in a few weeks and (though I am sure she has tons going on in her own busy, full life) she let me yammer on about Simon's progress. Of course, this blog came up as a part of our conversation, and I got to talking about why I started writing it in the first place.

Aside from the reasons I've already mentioned: to provide some information for other families like ours, and to use it to reflect on our experience as a family -- I've had another reason in the back of my mind. Since the rather dramatic events of early November (pre-blog), when we came so close to losing Simon, something in who we each are as individuals, and how we work together as a family, has changed. A shift, of sorts, and I feel like I have been looking to define it. To understand it.

I was trying to explain this to M, and she tried to get me to explain what the heck I meant (with good reason, what the heck do I mean?). I stated that I thought coming so close to losing my child left me altered (maybe shaken is a better term), and I don't think I've gotten over it. I said I imagined any such event (illness, financial loss, accident, death) would have a long-term, lingering impact on a family. I said a few other things that were probably equally vague, and then (finally), it sort of clicked for me. What changed is as simple as our perspective.

For years, we been pushing and pulling, predicting and prognosticating over what the future will be for Simon, what we should do, what may happen... and the fact that there was so much unknown and unknowable was infuriating at worst and frustrating at best.

If I don't know what is going to happen, how can I plan for it?

Truthfully, I know that no one can predict the path of a child, much less the path of one with brain damage. With any child, wanting to know what high school or even college to prepare for is a shot in the dark -- an optimistic and hopefully well-aimed one, but still unknown. With a child like Simon, there is no way to know what progress will be made in a month, much less a year. Will he be ready for inclusion kindergarten or still need special ed? In a few years, can he go to a regular school with his sister? Maybe not, maybe so.. wait and see.

I hate wait and see. I am not a wait and see person. I have sub categories on my to-do lists, and sometimes put things on them that I have already done, just so that I can check them off! I like to know what is next.

Until November. I can tell you the exact moment it changed. November 3rd at about 2 am was the first time I picked up a pen to write down my thoughts in many, many years. It was our second night in the Pediatric Intensive Care Unit with Simon. He had been unconscious for over 24 hours and we did not know if he would wake, or, if he did wake, if he would still be.. well, himself. Brian had gone home that evening to be with Olivia (who was also upset), and I decided to stay by Simon's side in spite of the fact that there was no sleeping allowed in the PICU and I hadn't shut my eyes in two days.

I had a notebook in my bag that I used to write down meeting notes on the fly. I'd been sitting staring into space for hours at that point, so I pulled it out and thought that maybe writing down what was in my head would make it more bearable (and keep me awake). Give me a purpose if only for a moment. This is what I wrote:

Here, alone, in the PICU, the best thing I can do is not think. Keep my mind empty, blank. Be ready to absorb any new information as it comes, but not ponder the larger sum of the experience. Just take away the lowest common denominator, and in the interim, remain neutral. 


I can't think or even describe what led us here without feeling my face flush, my bones chill and shake, and my eyes fill fast with overflowing tears. Nor can I speculate about what is next. What will the future hold, how will it be altered for my little family, without losing touch with solid ground. Even turf becomes lost in the dark. Like quicksand, the more I try to think it through, figure it out, the more it pulls me down.


I can't process my surroundings, or absorb the suffering of the parents and children around me. Frozen with fear, or resplendent in robes of denial, we all sit here together in a sort of stasis. We are all blank, really, because there is no way to grasp the whole of it. We are not looking forward, we are simply being now.

Being NOW. I really did learn that. Finally. I learned not to keep looking ahead, but take what I have when I have it and try to simply be there. For years, Brian and I looked at the future for our son with a mixture of fear, denial, and what we liked to think was optimism. Now, we don't talk about it so much. We do what needs doing (of course), we forge ahead, and put what plans in place we can. But now, when the concept of Simon as an adult comes up, we don't start to bicker over whether or not he'll be able to be independent, we don't tense up with fear and worry. We shrug. We actually smile. Brian teases me about buying a hideously huge RV and roaming the country with Simon as a navigator, and I feign horror at the thought of becoming a "snow bird."

And then, we say to each other that what will be, will be. For now, what do we want to do today?