Erik Quinn: The Heart of a Family: The Tao of Nancy

Thursday, January 24, 2008

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.

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11 Comments:

Blogger Katie said...

Its kinda hard to have everything you believe and trust in avolanch in at you ankles,its that i can see the light but cant quite reach it, feeling. People seem to care but prayers arnt always enough.
I guess i find it hard to be spiritual in the traditional sense, i feel the times we live in dont really allow for it. I certainly dont believe that God would allow any person to burn eternally - My take is that as long as you believe in your heart, and treat everyone with respect and kindness God will stand by you. But in my experience the community spirit of the church can either be wonderful and uplifting or leave you feeling guilty and worthless.
luv ya Nance

4:19 PM  
Blogger camille said...

Nance,
I hear you. Whew, we just got home from a Kindermusik program that our church is hosting and I definitely felt very out of place, as I tried and tried to keep my child from spinning any and everything in sight. Sigh.

As far as church goes, I feel that we are very fortunate as we were already regular attenders at this small church and I, in a very snotty and unattractive mess, confessed Connor's diagnosis to the entire congregation one week after we received the news. Though that was entirely unplanned and not what I wanted to do, I realize now that was the best way it could have happened. Everyone found out together and they have always known what he has and that he is different. But, and this is a big BUT, even with that, it is still VERY hard to go every week, to put him in the nursery where he, for an hour and a half, will spin every bowl and plate in the pretend kitchen. There are times where I feel we have fallen through the cracks as well, but I don't really know what to ask for. Can you remove all the kitchen items and anything that has wheels? I know they can't and I can't ask that. I'm not sure what the future will bring with Connor at our church but I do know the people there love him and they love us too. And even though that's lovely, it is a hard pill to swallow and just accept the love.

4:57 PM  
Blogger Julie said...

Nancy,

I don't feel this way on Sunday mornings but it isn't because I think my son or our situation is different than yours. I have always felt out of place. I am assuming you and I are relatively the same age so you will understand what I mean when I say having a baby at 16 was like have the scarlett letter strapped across my chest. Then having Lexi and getting divorced left me to raise 2 alone. Again I was the poor single mom. I guess I have just gotten used to being the different one. I do understand though because it took me YEARS to feel comfortable in church.

7:44 PM  
Blogger Heather said...

This comment has been removed by the author.

5:01 AM  
Blogger Carolyn said...

Hi Nance, thanks for visiting my blog the other day :)

I spent some time here getting to know you (hope that's ok). While I can't identify with your dilemma since I have no children (I raised stepsons), the feeling of rejection from church is something I've gone through for years in a different sort of way-- because I have no children.

I do know the feeling of not being heard by people who proclaim to be Gods people. I often didn't receive the follow-up call, or if someone did pick me up and take me as their guest one Sunday, it became clear I wouldn't fit in since I hadn't procreated. That wasn't a biblical sin so much as it meant the women there felt they didn't have anything in common with me. Anyway, I won't bore you with those things in my life-- I've recently began attending a Presbyterian church with my husband (he was brought up in one in NJ) and I must say, it's a refreshing change so far!

I wish there was something I could say and do to help you. I don't know why the church would see your family as a challenge. There are so many of whom are perceived to be "normal" out there that in my experiences are the hardest challenges to work or associate with. Just keep your head up and relate to God in your own way (shower, jeep, sitting under the stars...). Who knows, that phone may still ring today :)

BTW, this from another post: I think your avatar pic looks like the young Sophia Loren :)

5:45 AM  
Blogger Every minute counts.... said...

I too have flet out of place in church and do not feel that my worries are always addressed when it comes to being able to be a part of something I think my family as a whole needs. It just does not seem possible. Maybe someday. For now, we just have to have faith that the building is not that important it is what is in your heart.

Thank you for your posts.

Noel

7:33 AM  
Anonymous Gua said...

Do I respond to this? Am I ready? It's hard to separate Williams from what we would have been anyway. I knew when we attended church here for the first time 40 years ago(!) that somehow we didn’t fit. I don’t know for the life of me if we don’t fit or that my concept of “fitting” is skewed--that we fit as well as most anyone else, but have different expectations. When you think of it, it’s pretty difficult for a church to accomodate people from all walks of life, all philosophies, and circumstances. I know that we were headed to church one Sunday, decided that really wasn’t what we wanted to do, and ended up on the top of a butte, talking about what it was that would make it all right for us. We realized that we were worshiping in our own way right where we were. But isolation isn’t the answer, either.
We’re complicated people, and I’m glad that we don’t blindly stumble ahead, but that once in a while we really think things through (not that we come to any wise conclusions!). I can see your role here as one who will shake a cage or two and make a difference for other people, and hopefully improve things for yourself.. Seems like that’s happening to you a lot these days! Keep thinking, keep making a difference, keep being you!

Love, Mom

12:19 PM  
Anonymous AUNTIE DEE-TA said...

HEY YOU! AFTER CALLING YOU THIS MORNING AND SHARING MY FIRST IDEA AND IF THAT IDEA DID NOT WORK LET US DO A RALLY AT THE FRONT STEPS OF YOUR CHURCH "IF YOU COULD OF SEEN BRAD'S FACE WHEN I MENTIONED A RALLY" AND YES... IT WOULD BE A RALLY FROM THE 6O'S! SOMETHING REALLY GROOVY AND WAAAAAAY OUT THERE! YOU KNOW, TO GET THEIR ATTENTION! LOL!

I DO NOT KNOW WHAT TO SAY... I KNOW THAT I LEARN SO MUCH FROM YOU! AND THIS WHOLE THING WITH YOUR CHURCH... IT JUST BREAKS MY HEART! I AM TRULY HOPING AND PRAYING THAT YOUR PHONE RINGS SOON AND THE DOORS OF YOUR CHURCH BURST WIDE OPEN AND THE PEOPLE REALIZE THAT THEIR ARMS NEED TO BE WIDE OPEN FOR ERIK, BRIAN AND YOU, THAT THE WOMAN YOU TALKED WITH HAS AN ABUNDANT OF INFORMATION WHEN YOUR PHONE RINGS!

HOPING!!!!

1:38 PM  
Blogger Rosemarie said...

Sometimes where we think we should be isn't right for us at all.

Perhaps "whomever is up there" has already given you the okay to continue communing right where you are.

Don't sweat it! You're a good listener. When the time is right, your heart will know to move in a different direction.

Always let peace be your guide.

8:33 PM  
Blogger Amy said...

We have such high expectations of the world outside, and we are always baffled when that outside world fails us. It makes you realize that special people in our lives, the angels, are far and too few and we need to cherish the ones we have. There seems to be a short supply of heroes these days. I haven't figured out how to fit religion in our lives, it seems to be the last thing on my mind when the weekend roles around. I guess I try to seek spirituality out in other ways, (like snuggling in bed on a Sunday a.m. watching cartoons together)for right now. Getting lost in the moment and enjoying my daughter seems to fed my need for connecting with a higher power, for me it is one in the same.
XOXO
Amy

7:22 AM  
Blogger Tara said...

Nancy,
I love your 'new theory'. It is so true. I wish I had some wonderful words of advice for you. I, like you, attend the church I grew up in. They are aware of Payton's diagnosis, aware of her sensitive hearing but yet don't seem to care. I am lucky in the sense that now, Payton is attending sunday school instead of going to the nursery. It's much more quiet and the kids are listening to the teacher (halfway at least). Then comes time for worship. I can't tell you how long it's been since I've made it thru a worship service. Payton gets so nervous, and insists on yelling "I gotta go pee!" because she is nervous...she also sits and bites her nails. We are currently trying to make it thru half the service and then just getting up and leaving. It seems to be as much as she can take - yet it almsot seems too much. I don't know why I'm determined to make it thru a church service.....I just really enjoy the fellowship I think. And - Payton loves to see the people, she just can't handle the noise during the service. It's so tough - but keep fighting. It upsets me so much that the church doesn't take care of it's own people. Members who have been there so long and they don't reach out to you? It's a hard pill to swallow. I'll be thinking of you.

10:59 AM  

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