The Tao of Nancy

I reject your reality and substitute my own.

-- Adam Savage

I'm in a strange spot spiritually these days. While the defensive numbness brought on by Erik's diagnosis continues to recede, I am suddenly able to profoundly feel many of the things I have anesthetized with trivial distractions and compartmentalizing all that occurs in my world. What worked for me before in order to shove things aside no longer is effective. It's obviously time to grow up and move on. Looking back, I see I was totally and completely numb for months at a time out of necessity. There are now many lovely things I am once again able to enjoy fully, yet there are a lot of feelings I no longer can hold back that simply hurt. This has been happening slowly over the past couple of years, but the process seems to be quickening now.

I talked to a mother whose daughter is severely mentally retarded. She told me that her experience with her child eventually brought up unresolved childhood issues of her own as she cared for her daughter. I want to talk to her more about her experiences and plan to meet with her again next month. I'm still waiting for some sort of lightbulb moment, but I find that knowledge and wisdom arrive at their own pace, no matter how badly I want to possess them. I'm still a complete novice. I'll let you know when I'm smart and wise.

Please don't hold your breath.

Importantly, I reached out to my childhood church yet again. I seem to love banging my head against a wall. I can't bring myself to post what I wrote the day it happened, as it is just too personal, but it seemed to be a positive experience. However, as I find myself searching for something within the walls of what would be considered traditional in terms of religion, I find myself eventually feeling completely forgotten. It seems we are not victims of cruel intentions but of simple bureaucracy. I find it very difficult to believe that if the traditional path is impossible for our family, we will all perish screaming in a lake of fire somewhere down the road. Sorry, but I just don't buy it. It is strange feeling closer to God than ever through Erik and yet even further away from what I grew up believing what my spiritual life would look like. I can honestly say, though, there has not been one day since Erik was born that I have ever been angry at God. My miscarriages prepared me for what would come. I knew when Erik was born that sometimes things just didn't turn out "perfect." I have arrived at a place where I am actually thankful that nature saw I did not carry those babies to term and that my body did what it was supposed to do--perfectly. By the time Erik was born, I had accepted the fact that things go haywire genetically, which took a little of the sting out of what ended up being an extremely very painful experience. I learned to adopt a more scientific outlook on a very personal subject. I know that Erik survived because he was strong enough. Even perfect enough. I am thankful for that. I will never jump for joy or consider Williams syndrome a gift but can really visualize and appreciate the blessings he has brought to my front door on a daily basis. Maybe in the end it will be a gift after all. I'm not there yet and may never be. That's okay.

Last week I once again made my feelings known to a church deacon who happeend to call our house in the role of parish leader and very innocently asked if there were any issues to pass along to our pastor.

Sigh. Here we go again.

I explained our situation once again in graphic detail to this poor woman and voiced my concern that families like us are falling through the cracks, finding themselves isolated at home. This will be the fourth or fifth time I have tried to explain our inability to simply attend a church service. In December we received an invitation to attend a Christmas service for those who were grieving and/or experienced loss. I explained that while this was appreciated, we were obviously not being heard! After my lengthy monologue, the reaction from this new deacon was promising, and I felt hopeful. Erik has now been tentatively matched up with a high school girl who may take him to Sunday school while we attend services (which, in itself, is a dream come true for my son, the ladies' man). Once again, I have my naive hopes up that we will fit in somewhere like other families do. I felt uncharacteristically optimistic about this, as it was the first time it seemed we were visualized as an exciting opportunity, not a challenging problem.

It has been days since my request, and yet another Sunday looms large ahead of us with no answer. It is hard for me to accept the fact that something as simple as attending Sunday services hinges on the desire of a teenage girl to help us out, but I suppose that's life. It would just be nice not to feel like a freak show just for one Sunday.

My new theory: Erik's hearing remains painfully sensitive while the people around me are completely deaf.

There has got to be more to this spiritual thing than putting my heart out and getting it stomped on by people who can't seem to hear me or think I should do things a certain way. If there is anything I have learned in the last three years, whomever is up there can hear me just fine from my shower or my Jeep (these seem to be the best "wireless hot spots" for me).

In closing, while my phone sits silently in its cradle, I feel like an idiot for believing this would work. If I haven't figured out that things don't work out the way I planned them by now, I'm even more dense than a freaking neutron star.

So this is it. I have poured my heart out and offered myself to others as I was raised to do, but if we get lost again, I'm done for the time being and will consider starting my own bizarre cult.

F*ck bureaucracy.