Erik Quinn: The Heart of a Family: Hitting The Wall

Monday, December 03, 2007

Hitting The Wall

What makes a king out of a slave? Courage! What makes the flag on the mast to wave? Courage! What makes the elephant charge his tusk in the misty mist, or the dusky dusk? What makes the muskrat guard his musk? Courage! What makes the sphinx the seventh wonder? Courage! What makes the dawn come up like thunder? Courage! What makes the Hottentot so hot? What puts the "ape" in apricot? What have they got that I ain't got?

-- The Cowardly Lion (Wizard of Oz, 1939)

I have decided not to write about what happened at church, at least in graphic detail as I have a tendency to do.

I just can't.

The majority of the time I am one put-together kinda gal. Sure, I'm a little on the shy side, but nothing like I used to be, thanks to Mr. Erik Quinn. I have a generous supply of polite smiles ready to dole out as needed, and the average Joe would never know I have a care in the world as they passed me on the street. I am blessed with the ability to make people laugh to the point of snorting beverages out of their nostrils and consider myself a lot of fun to be around in general. Sure, I have my bad days, but, thankfully, I live and work the majority of the time in the privacy of my home, and nobody has to know what kind of day I am having. Only my friends, family, and on line diary readers have seen me show what the last three years has done to me emotionally here and there. Most days are actually pretty great, anyway. I do know how incredibly lucky I am. How wonderfully blessed I am. I am beyond thankful for what I have. However, the bad days that come occasionally are straight from the depths of hell, and they usually sucker punch me in the stomach without any warning whatsoever.

Sunday I slipped for the first time in public. Big time. I felt myself breaking, and I couldn't stop what was coming. I slipped for all of the world to see. I found myself hopeless and weak, and I can't even begin to talk about it, even here. We went to church...yada, yada, husband steered me out to the car halfway through the service in the driving wind and snow with our son in his arms. He told me that although some everyday situations like church weren't working out at the moment for us, we would learn to find our own way. On the way out the door, we passed a mostly bare Christmas tree with a few slips of paper the youth group had decorated hanging for dear life onto the branches in the storm. As I watched, several of them ripped loose and flew across the street to kiss the surface of the high school athletic field and disappear into the winter sky. I found one I liked, detached it from its twisted wire anchor, and placed it in my purse. When I got home, I placed it on my own tree.

The church called today. I let the answering machine pick up. The woman who discovered me in the downstairs hallway sobbing and pathetic apologized for what happened and asked what it would take to make our lives easier. She said, "We really need to move forward from this." Oh. Okay. Where have they been after they offered to meet with us weeks ago? Where were they when they all went on without us, like the rest of the world tends to do, enjoying the spoils of Christmas plays, cookies, and the scent of coffee in the crowded hallway while we sat at home? Where were they when my son simply glanced at the interior of the nursery on our last few attempts to attend and began sobbing because of his blossoming anxiety and the memory of the sounds of a fussy baby from weeks before? Just what should I do about the fact he doesn't fit in anywhere? The fact we have no place to even SIT when we attend church except for out in the hallway?

Right, let's move on and put this bit of unpleasantness behind us all.

Please. Tell me what to do to move forward. How to keep my heart from breaking when my son is practically begging me to turn the car around instead of visiting a friend and her child because his brain can't process the normal noises children like hers make. What to do when I can't attend my best friends' baby showers ever again because most of the little things associated with babies make me physically ill when I look at them. What to do when my son tries to wrench his hand from mine and run out into traffic, not seeing cars coming, and punches me, kicks me, and growls at me when I restrain him. What to do when we are instructed to bring him to Sunday school despite the fact he can barely hold a crayon. What to do when a police car passes with its siren screeching in the night miles away and he wakes up screaming. What to do when I am increasingly isolated in my own home from my own friends who are raising the typical kids he desperately wants to love but cannot physically stand being around. What to do with a kid that is proving to be exceptional in most areas, despite missing 20-some genes, but who cannot seem to function in the outside world surrounded by his peers. What to do when there is just a little less Erik and a little more Williams syndrome in his face and in his voice each morning I go into his room. Tell me how to move forward. Please.

Because you asked that question, I feel as hopeless and frightened as ever.


I couldn't tell you what would make my life easier at this moment even if I tried.

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Blogger Heather said...

In the end, the Wizard could not give the fellow travelers anything that they didn't already have. Their journey helped them to realize that they had what they wanted most all along. They didn't have to search for it elsewhere, only in themselves.
You will find the strength to carry on. I promise.
Love you, Heather

6:07 AM  
Blogger Tara said...

I'm so sorry you've had such a horrible time lately. I often tell my husband how it feels like my life is just work/home now. I feel so isolated and alone because we can't go and do things like everyone else (eating out is impossible, attending activities that others do is impossible - or we suffer after it's all over with extreme meltdowns). Payton struggles with anxiety like Erik does - generally her anxiety deals with noises...but other issues cause her anxiety as well. I've finally come to the conclusion that medicine is the only thing that is going to work for her. I think the holidays make those of us with children who have anxiety issues realize how isolated we truly are. I'm thinking of you Nancy....and I do hope that those of us with children a little older than Erik can say something or provide some type of information for you that might help Erik in the future (I know Penny and Heather have sure helped me in the anxiety area).
Many hugs heading your way,

6:32 AM  
Blogger Amy said...

Get up every day, put your feet on the ground, and keep going forward. You are braver than you think, and braver than most.

11:12 AM  
Anonymous AUNTIE DEE-TA said...

COURAGE... the attitude of facing and dealing with anything recognized as dangerous, difficult, or painful, instead of withdrawing from it! Webster



2:11 PM  
Blogger Penny said...

Remember this....

........But after you've been there for awhile and you catch your breath, you look around, and you begin to notice that Holland has windmills. Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, 'Yes, that's where I was supposed to go. That's what I had planned.' And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Thinking of you...

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3:13 PM  
Anonymous Anonymous said...

At least for me, I can say that my own frustration with finding a place for my son at church comes from the fact that if there is any place in the world where I should walk in the door and find an overflow and abundance of love, compassion, and mostly accomodation for my son's needs, it ought to be church. I've shed my own tears in the car to and from church many times. I'm in the process myself of trying to fix that issue. I do worry that I'll have a public meltdown at church before I manage to get that all taken care of, something like what you described . . .

Anyway, hang in there. In the research that I've done, most churches that have great special needs programs for kids have pastors who have kids with special needs, obviously they know what the need is and are in a position to do something about it. Mostly, I think, it is ignorance on the part of most. They really just don't get it, and don't know how to help even if they wanted to (sigh). Which, as usual, leaves it in the hands of parents like us to push and advocate and help people understand to make change happen. Its ironic though, that those of us who are the most emotionally taxed have to take on the most emtionally taxing issues. Life just isn't fair. I guess its a good thing my mom has been telling me that my whole life . . . it doesn't come as such a big surprise then!


3:30 PM  
Blogger Katie said...

Tomorrow you will get up, as you always do, carry on as you always do and put on your brave face - knowing that we will always be here to listen, love and never judge you when ever you need us.
We love you Nancy and i wish i could wave a magic wand to make this all so much easier.

7:18 PM  
Blogger Leslie said...


I wish I had magic answers. But all I know is that it takes time and lots of it. I want to just bury my head most days. I'm sad most days. I'm exhausted most days. Life is just so not simple anymore. And seems to be getting more twisted and complicated. I'm taking a blogging break to process all of our past week's 'stuff.'

I'm thinking of you and Erik. It just takes time...

8:03 PM  
Blogger Every minute counts.... said...

I am struggling with a simialr situation. A church that I would love to feel apart of but can not because of my daughter. There is so much that goes on with her that most people will never understand( including myself somedays). It is true that things seem so much worse around Holidays. It is supposed to be a happy time. I myself dread all of the gatherings, which causes my ulcers to flare up! Last year we opened presents around the tree without Abi. It was too much, even with just the 3 other kids. She watched a movie, we opened presents. She could have cared less and it broke my heart!
Thinking of you,

12:46 PM  
Blogger Kerry said...

Heather's words were perfect. I love you~

6:36 PM  
Blogger Michelle said...

I'm so sorry for the incident that happened at church; your pain and frustrating comes out in your post and I pray for peace for you and the strength to get through this.

9:00 PM  

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