Summer Firsts

The church called today to personally invite Erik to participate in vacation Bible school in July. They have apparently already made arrangements for Marla, Erik's aide during church services, to be by his side throughout each session. I didn't know what to say to this, really, and the conversation was riddled with awkward, silent holes. I almost cried after I hung up the phone but held it together. I am just so incredibly thankful.

I also was invited to join a friend and her son (also with a disability) to participate in a parks and recreation art class for 2 to 4-year-olds. I was previously thinking about trying the music exploration class, but the more I read the description, the more I think art might be a better (quieter) way to go this year. Erik's hearing is still very sensitive and terms like "family music jam" seem a bit off-putting. We'll do it next year.

It's settled, then -- Jesus and art.

I have butterflies in my stomach, as this will be the first time we have done anything like this. I remember participating in classes like these as a child, and I wouldn't trade the memories for anything. Now it's Erik's turn.

I'm so scared. But I'm so ready.

Attempting Courage

I'm feeling nervous. I wrote the following letter to the pastor at our church. Hopefully I will not chicken out before I deposit it in the mailbox. I have enjoyed our anonymity in our congregation, but as time goes on it is clear that soon everyone will know who we are. The article I enclosed on integration in a church setting is no longer available on line, but I would be happy to share it with you upon request.

January 12, 2009

Dear Steven,

I attended a trivia/brainstorming session for parents last year with my husband Brian. Our son Erik was born with a genetic birth defect called Williams syndrome, and although we tried on a few occasions, we were unable to attend church because of his disabilities.

First of all, I would like to express how grateful we are for the help we received. Janet did a fabulous job of matching us up with Marla, and she has been lovingly caring for Erik during church services every other week. Erik’s brain does not process loud noises well, and they seem to cause him physical pain. For this reason, being in the nursery with crying babies was absolute torture to him. In fact, on one previous attempt to attend church, I left during the service sobbing with our agitated little boy, feeling like we did not fit in anywhere. Now that Marla is on our team, she has introduced Erik to the church experience, and he is thriving there. Lately he has been able to sit with his peers during the children’s moment with Marla. It is not often that things feel “normal” to me, but this simple thing has given me so much joy. I had tears running down my cheeks the first time the door opened and Erik was led to the front of the church. Just like the other children.

The purpose of this letter is twofold. First, I would like to make myself available in the event there are parents who are struggling with a disability in their child. I am concerned there may be others in our community who are feeling alone like we did. We were isolated for years until I finally spilled my heart to a deacon who called to ask how things were going. I am also now part of a local support group in town and consider myself an expert at having coffee with others.

Second, I would like to give you this article that beautifully illustrates the challenges we have been experiencing and will likely experience in the future. It even describes the behavior of a young boy with Williams syndrome. If you do not know Erik yet, he will definitely make his presence known to you in the future. Erik’s syndrome gives him what some have labeled a “cocktail party personality.” He knows no strangers and will approach anyone. If I do not intervene, he will approach people on the street, reach up to them, and hold their hands. While this is terrifying as a parent outside our home, I believe a church environment may be a safe, supportive place for our family to just BE without the constant fear. I do not look forward to the day he realizes he is different or hears someone call him a “retard.” That day will be very difficult for Erik, but it is coming, and his belonging to a group will be even more important. Not everyone believes his odd behavior and friendly mannerisms are charming, and that has been a painful realization over the past few months for me.

My hope is that one day Erik will be able to sit with us in the sanctuary and that the people around us will at least attempt to accept who he is, differences and all. I plan on teaching him to be a polite young man who is respectful and keeps disruptions to a minimum, but I know he will struggle. Only time will tell what is possible for our family. However, it is so much easier to dream knowing we have support from our church family.

Finally, that dark day I left the church crying my eyes out, there was a Christmas tree outside the front doors you had invited us to take a label from. The wind was whipping things around, but I managed to free one without letting it go. The word on it was “COURAGE.” I now unpack it from my box of Christmas decorations each year and place it on my own tree to remind myself how far we have come and what is possible if we dare to dream it.

There is nothing left to say but THANK YOU.

Very sincerely,


Nancy (Erik’s Mom)

Imperfection

I sat in my pew at church today and watched the little door open to reveal Erik and Marla coming in for the children's portion of the service. I took a deep breath and elbowed Brian in the arm. Erik's eyes were wide, and he scanned the people facing him. He's usually bigger than life to me, but out in the world without his hand nestled in mine, he looks incredibly small.

But I didn't cry.

The youth pastor held up a drab-colored plastic bowl for the children and explained how it was perfectly formed. That it had been molded that way in a factory somewhere and was ready to do what it was designed to do. That, in fact, there were a million bowls just like it that were designed to hold ice cream, or yogurt, or fruit. Perfectly.

He then held up a slightly asymmetrical clay bowl glazed in two different colors that a friend had made for him. The light coming from above reflected off its dimpled surface. He explained that the bowl had been intentionally made this way into a unique form and that, like this bowl, none of us is perfect. That each of us contain things that make us different. I looked at my fair-haired boy blinking in the bright lights, sitting on the edge of the group of children. I thought of the secret we keep shrouded in silence from the people surrounding us. The blank spots on chromosome seven where those missing genes should have adhered. The strange little secret that makes Erik incredibly different. The secret that is very slowly revealing itself, whether we are ready for it or not.

But I didn't cry.

The youth pastor pointed out the strange bump on his ear that wasn't considered normal but ended up being a family trait that he shared with his sister and his father. How this very flaw makes him special and confirms his place within his family.

How imperfection makes the world richer and more interesting.

How imperfection ends up being a gift if we dare to accept it.

The pastor asked the children to repeat a prayer celebrating each of them, imperfections, differences, and all, and then they were excused. Including Erik, who apparently successfully went to the last half of Sunday school. Perfectly.

And I didn't even cry.

Mess

Never think that God's delays are God's denials. Hold on; hold fast; hold out. Patience is genius.

-- George-Louis Leclerc de Buffon

We made it to church this morning. Although we are now fairly regular about attending, we still don't go every week, and that's just fine with me. My attitude is slowly improving about the whole experience, despite my general dislike for organized religion, and my fear is beginning to fall away somewhat about letting Erik go to find his way in that particular environment. It just feels right. It is what I fought for.

We are now attempting to get there early enough to enter through the front doors so Erik can greet the greeters and other members of the congregation like the other children do. It feels gloriously normal. From there, we take a detour back out of the sanctuary and locate Marla, Erik's personal caregiver, to drop him off. This morning she mentioned she might take Erik into the sanctuary during the service for the very first time. Brian and I looked at each other and voiced our surprised approval.

This morning's message was about patience. The word was defined as the ability to live for the here and now, even in the middle of the incredible mess that life sometimes is, instead of trying desperately to control what we cannot and rushing to get to the next perfect thing we desire to do or be. It was explained how even the story of Christmas has been so sanitized and idealized that the pain, struggles, and heartache that accompanied and even helped bring about the miracles have nearly been lost. And how we might relate to it and find even more hope in the story if we know the chaos and the mess that went with what truly happened. Because we live in mess and chaos a lot of the time.

Part of my own personal mess includes the struggles with isolation and heartache that come with having a child with some very bizarre special needs. We have occasionally simply been forgotten and excluded in the past, even at church. Now that we are included as much as possible, things are still messy. For example, it rips my heart out to watch the other children gather at the front of the sanctuary for the children's moment during the service each time we attend. I'm getting accustomed to it and even enjoy it a bit, but it always stings my insides knowing Erik is unable to participate.

Today, though, the door to the sanctuary opened, and Brian whispered, "Here comes Erik." I turned to see his little face bobbing in the group of other children. Marla sat down with him on the edge of the group nearest the door. Erik seemed slightly anxious and hell bent on loudly repeating "Happy New Year" to whomever would listen for some reason, but Marla whispered in his ear, and he finally became quiet. His eyes were wide, and he looked up at the lights and then around at the faces of the other children. When coins were dropped into a metal bucket to fund meals for the hungry in our community, the sound caused Erik to cover his ears in alarm. However, he remained sitting on the steps with the other children. The steps he has never touched before. The steps where I once stood in my polka-dot dress to be baptized. The steps where I waited alone in an empty sanctuary for Brian to see me for the first time in my wedding dress. The very same ones. Now Erik had a place on them with everybody else. Finally. My heart swelled with happy ache.

I felt hot, embarrassing tears welling up in my eyes, and I tried to will them away.

As the children finished their portion of the service and they were told to leave for their age-appropriate programs, Marla pointed us out to Erik. By this time, the tears were quietly flowing from me like rivers. They ran down both cheeks and the front of my neck into my sweater. There was no stopping them now. We began waving at him. Erik was obviously surprised and smiled back as he was led past our pew. The people around us smiled and glanced back at us, too, not knowing our story but obviously appreciating our unusual, unbridled enthusiasm. From there, he apparently spent the majority of his time in the children's program he would normally be part of. The very program that has not been possible for him in the past because of his hearing. By Marla's side, he had very little trouble this week.

We gathered our things after the service and found Erik and Marla. As we turned to leave, I threw my arms around Marla (something I do not normally do) and hugged her tightly. I then plucked one of the last shortbread cookies from a tray for Erik, and we made our way outside. Erik squinted his eyes tightly shut as Brian held him up to the rope hanging down from the church bell, and Erik gave it a few tugs, filling the air with bold, joyous clanging. I made small talk as I fought persistent tears and marveled at how completely wiped out I felt. I laughed out loud at this and sighed.

I was a happy mess.

Haunted

I sat in church next to Brian today and ended up craning my neck to see the small door across the sanctuary that frames three square glass panes. I previously detected movement behind the glass in my peripheral vision and turned my head to look, instantly recognizing bits and pieces of Marla, the woman who cares for Erik during church services. I spotted a neat ponytail. A flash of disembodied, bright smile directed at an invisible somebody in the hall. I then thought I saw a piece of Erik. A long, stiff leg encased in a plastic brace kicking from an awkward, high angle. Perhaps from an invisible somebody's arms. I smiled and lost track of the sermon. When I glanced back at the pastor and then back at the door, he was gone.

During our church services, young children are called to the front of the sanctuary. They are usually given a trinket or encouraged to use props to help illustrate a popular Biblical story or a heartwarming but educational anecdote. From there, they are instructed to follow a woman in a jaunty, brightly colored hat to their age-appropriate Sunday school programs while their parents continue to worship. Erik has never been a part of this group. It is simply not possible at this time because of the sometimes crippling side effects of his syndrome. Instead, I search for glimpses of my child through the windows surrounding the congregation during the service, hoping to see his face as he leads Marla by the hand. He loves going to church, and we have never forced him to do anything that causes him discomfort in a place where he should feel safe and loved throughout his lifetime. Unfortunately, it has been a long road reassuring him that he is safe and loved in this often noisy environment filled with the children he prefers to avoid. As the adults gather after the service, Erik is in his element. He reaches his arms out to each and every person that passes by, almost frantically grabbing at their clothing and smiling up at them. In fact, he is usually so desperate to grab onto strangers that Brian and I are sometimes forced to carry him out the front of the building so he is unable to get his hands on people. It can sometimes be quite awkward. It's beautiful but scary, sad, and frustrating at the same time, too.

Some Sundays I don't think about our odd church arrangement much at all. We attend every other Sunday and dutifully call Marla at home the night before to instruct her to meet us inside the front doors. However, some Sundays I think a lot about it as we sit quietly inside. I wonder why we have to watch other children sit still listening to stories as Erik wanders the rest of the building haunting classrooms and the nursery as much as he can tolerate. He seems to fill the role there as the greeter who never fails to spread smiles before disappearing when things become too loud or frightening.

This Sunday was somewhat difficult for me once again, but I noticed that my eyes don't threaten to fill with tears much anymore. They remained bone dry, but my heart was heavy. The people who watched me grow up in the church patted me sweetly as I passed by and offered friendly hellos, but I honestly don't really know much about them these days. Williams syndrome has isolated us all now for years. I am thankful, though, for some friendly faces in the crowd, and I find myself grinning back.

Erik, however, seems to be another story.

While we sit quietly or sing strange, contemporary songs that seem to punctuate new-fangled church services these days, Erik is behind the walls making his rounds. The choir room. The classrooms. The library. The commons. The offices. Each time we emerge into the hallway with the rest of the coffee-swilling, cookie-munching crowd, Erik is standing at Marla's side with his hand nestled in hers, smiling up at an ever increasing number of fans, most of which obviously know him by name. Marla is always smiling broadly. As we said our goodbyes today, Marla told us both that Erik was truly a joy. Her husband just had colon cancer resected, and she informed us that she really needed some time with Erik.

I still wonder if Erik will ever be able to sit still enough to join us at church. Or anywhere, for that matter. To be comfortable surrounded by children in front of the congregation, laughing at really lame jokes and learning things like other kids do to the amusement of the congregation. Probably not. At least not in the near future. By then, he will be too old for this kind of activity, anyway. We have missed out on a lot of little things parents take for granted, and I have mourned each and every little thing before I learned to move on. I know that accepting reality will make things easier. It always does.

For now, though, I see how amazing this little guy of mine is. He is a cheerful apparition dancing on the fringes of what is considered normal there, holding a strong, reassuring hand and spreading smiles before sometimes dissolving into the shadows again when the other children appear.

In fact, if you look away for a moment, you just might miss him.

Sermons and Serpents

I left our bathroom window open last night to cool the house down as we slept. Well, that was the theory, anyway. I don't sleep well with open windows. In addition, for some reason, the birds sang a sweet, happy song starting at about midnight last night. They sang for hours off and on, making me jolt awake and conclude that it was a decent hour to get out of bed. They were probably wasted on sunbaked berries. Feathery drunkards.

The happy result of my insomnia, though, was the gift of extra time this morning before we left for church. Erik and I dressed up a little. I suggested to Brian that we make an outing out of taking our bottles and cans to the supermarket after the service. We loaded them up, reaching into the box we store them in and putting what was overflowing the top into the depths of a black garbage bag, stashing the whole collection in the back of my vehicle behind Erik's seat. Then we were off.

After a successful morning at church, we strapped our happy son into the Jeep with his Dixie cup of cookies and homemade banana bread from the children's snack table on the way out the door. We then drove the short distance to the store. I went inside with Erik to locate soy ice cream for Gracie-Cat, as the yogurt I have been hiding her thyroid medicine in is apparently making her fur fall out in clumps, leaving behind bloody scabs. On our way out the door, we located Brian feeding aluminum cans into the boxy machines that crush them down and spit out paper receipts. I parked my cart where Erik could watch us work, and I got busy reaching into the basket of the shopping cart where Brian had dumped our bottles and cans. I began to help him stuff the machines, trying to breathe through my mouth as to not inhale the scent of hot, fermented beer. When I finally glanced down to see how many cans were left, I saw a length of what I thought was a bungee cord draped over the pile of metal and glass. After further investigation, I realized that I was not staring at a bungee cord at all.

I hate looking weak, especially in front of my husband. I especially hate screaming like a little girl. Instead, I quickly scanned the stripes on the thing and identified it as the booty of a healthy-looking garter snake. I immediately ceased plunging my forearm into the wire basket and heard my voice go up a few octaves to reach the frequency reserved only for emergencies.

"Honey? What's that?" I pointed to where it rested.

Brian looked surprised and amused, and we both laughed. The creature raised its head up and glided over the cans, looking for a way out of the unwanted madness. It decided not to drop down onto the foreign surface below the cart, at least at first, and retreated to a corner of the cart. Brian suggested sticking to the top layer of cans, and we picked around it. Finally, its head stuck out a hole in the bottom of the cart. It gingerly dropped down onto the concrete and quickly slithered under my can counting machine. We finished the job while I watched my toes. I had a pretty serious case of the freakies.

Brian said, "That's going to scare the crap out of somebody later."

We both laughed again.

We discussed how extremely thankful we were that the snake, who had likely traveled around the corner from the sun-scorched rocks along our walkway into the shaded box by the open garage door, had stayed in place and not escaped during church. However, it was in my Jeep the entire time. I am not deathly afraid of snakes, but I would prefer not to touch them, especially when I am rocketing down the highway in my vehicle. Oh, sure, this one was completely harmless. That is, it would be until the moment it came over my shoulder to rest on my lap or lazily wrapped around my calf, after which I would careen off the side of the road into a power pole, plunging the city into darkness, or, worse yet, through the plate glass windows of a crowded Denny's.

I consider that very dangerous indeed!

Oh God

The church office finally called. The woman on the phone was the exact person I was trying avoid speaking with about my problems, as I am highly uncomfortable with her, but it would have been a teensy bit awkward telling her that, so I put on my big girl pants and let it go. They have found Erik an aide for church services. The woman from the office and the volunteer will be meeting with us tomorrow morning at 9 a.m.

This whole process seems awfully difficult and stressful, and I want to just tell them to forget it, but I finally have results and could assist another family like ours by simply not going away. I'm very good at not going away. A quitter I am not.

It's worth a shot, anyway.

Today did not go especially well in general. Erik officially hates school and tells me he is not going the entire drive there. When we arrived, the street was so slick that at one point Erik was moving without actually moving his feet. He looked up at me, confused. By the time we made it to the front of the school, we had a panel of judges (teachers, aides, and bus drivers) critiquing our skating techniques. Erik apparently soaked his jeans around his diaper somehow at school, as he came home in his spare ones with urine-soaked britches in a plastic baggie in his backpack. I haven't begun toilet training, as he tells me no every time I bring it up, like everything else I suggest. We warred over lunch, naptime, not pounding on my computer keyboard, etc. I was a punching bag once again. He did sleep long enough that I got my work done so I won't have to work this evening. My head is pounding.

It might be a good idea to send me good vibes, say a prayer, or chant something appropriate in my honor tomorrow. I really would like to avoid making a complete ass of myself, smacking someone with the Old Testament, or, heaven forbid, crying in front of these women. I really, really don't want to cry.

Stick a Fork in Me

Warning: The following is venting. I don't want to talk about it outside of this post. In fact, I may turn my comments off. If I do not vent, my head will explode like one of Gallagher's watermelons. This remains my online journal, and I have never nor will I ever keep anything from it that comes to my fingers as I type. If you feel like calling me or e-mailing me, please make sure you have a good diet cocktail recipe or hilarious joke ready. I love all of you. I'll be just fine. And thanks.

I refuse to lie to you. The last few days have been pure hell on earth. In fact, I am crying at this very moment, so you will have to excuse a possible lapse in my writing ability. We are snowed in today and have been all week. This will be at least the fourth day of school Erik has missed because of weather-related decisions that people living here for an entire eight minutes have made. Has anybody seen snow before or what? In fact, our city already spent the money allotted for snow removal this year on other things because we haven't had snow for a couple years, so they assumed we would not again this year. Freaking brilliant. Go home, you posers. All of you.

I am seeing some very disturbing things happening in terms of Erik's behavior. He is frustrated at being snowbound and today asked to leave the house, specifically in my car, so we could see my parents. I had to tell him no but that this might be possible tomorrow. I have been punished for this all day. I have been kicked in the stomach. I have been slapped. I have been pinched. I have been yelled at. He has thrown food that he likes all over the floor. He has destroyed his room. He has refused to do anything I have asked him to do. I had to hold him down kicking and screaming to get clothes on him and brush his teeth. He has again refused the things he loves just for the simple pleasure of telling me no. There is nothing I can do for him except take him to see anyone besides me, and he has made that very clear.

You know, this wouldn't be so terribly bad if it didn't happen hour after hour, day after day this week, but it has, and I am at officially at the end of my rope. I have read in the resources I have that this can be classified as typical WS behavior and that if I give Erik slack in terms of his outbursts that he will be "socially rejected" in the future (as if he isn't already, anyway). No pressure. In fact, I have read that a variety of studies have reported that 52% to 85% of WS children are classified as "potentially disturbed," although I am guessing there is another more politically correct term now. I have been warned about a "low tolerance for frustration," and I can see that very clearly now. I try to do the correct things as a mother, treating Erik like I would any other child and focusing on the positive, but I'm certainly not perfect, especially in this kind of uncharted territory. What sucks is that no matter how I respond to him, he continues the same behavior--kicking, slapping, and growling, punishing himself by refusing things he enjoys in order to hurt my feelings, although I try not to let it show. He yells all of the things I have said at himself within earshot and even seems to come up with things I have never said at all (Stop it! Right now! Don't touch that! Go to sleep! Don't do that!). All are negative things, despite the fact he consistently gets praise and love daily. I tell myself that I need to continue being consistent in love and discipline, even though it doesn't seem to be working at the moment, hoping that it will eventually set into his brain that I am not weak or kidding. But, God, I feel so weak. There are weeks where I have moments alone in which I find myself looking at the ceiling or the sky and saying, "PLEASE HELP ME!"

What behavior is "normal" and what behavior stems from WS? I have learned that it is impossible to find much that isn't affected by WS in some way. The low tolerance for frustration. The impulsivity. The anger. I have been told by other parents that what Erik is doing is completely normal, yet in my eyes it has an underlying flavor that is DEFINITELY NOT NORMAL. This is also completely new in Erik's personality when there was no hint of it before. Of course, he doesn't do any these things to this degree unless we are alone, so I suppose most people think I am either nuts or full of shit. I heard on the news today that Britney Spears was held on a 5150 at a psych ward, and I actually felt myself drift into a jealous little daydream. I can't help but remember when my concerns were dismissed by everybody and their dog when Erik was born, including his doctor, when I knew something was terribly wrong. Oh sure, he failed numerous hearing tests, screamed all of the time, and never smiled, but he was just colicky. There are actually people who have admitted to me that they initially doubted my ability as a mother and wondered why I couldn't hack it. I have heard this from several people, and I love their honesty (and their typical children). However, my heart hurts more than just a little bit when I hear this.

I just know that when I was a child I would never walk up to either of my parents and pinch them or slap them on the back of the head as they sat in a chair. Hearing stories from the parents of older children with WS, I relate to everything they are saying. I just know I'm not nuts.

Today I tried so hard. We read books, most of which Erik insisted he disliked and wrestled with me in order to close, destroying some of them in the process, finger painted, played with water in the kitchen sink, and made a sorry attempt to play with toys, most of which he has no interest in at all. He made it quite clear that absolutely nothing I did or tried was acceptable to him or made him happy, throwing ugly fits all the way. What makes this worse is the fact that he does not seem to enjoy typical things, so I have to think outside the box. There isn't much outside the box at the moment. Erik, I'm trying so hard, baby, but I can only do so much. I'm sorry.

Yeah, yeah, I know. Perfectly normal. Typical childhood behavior. Late terrible 2s. Ha ha. Oh, I am in for it now. Oh, yes, I have heard it all. I'll certainly try to deal with it like most mothers. I'll get right on that and try to nut up like the rest of the women around me do. Oh, and can someone tell me what I am supposed to say when I am out with a group of women, they are bragging about their children, and I feel like disappearing into the floor because I don't know how to talk about my own kid without making anyone feel uncomfortable? Yeah, the last time I tried to talk about Erik and how amazing he was, I got this: "That's so sad." I can't even talk about my own kid.

Oh yeah. I almost forgot.

Still no phone call from church. I'm not finding comfort in much of anything associated with religion anymore. After this week, I probably get to tell the church that I once loved, where I learned Bible verses as a child, where I sat in a pew with my folks over the years, where I was baptized, and where I was married at age 30, to go fuck itself with great gusto. I suppose it's time. After all, I reached out for help just a mere two years ago.

Miscellaneous

We attended a birthday party for our friends' 1-year-old girl yesterday, and Erik did very well in a very crowded, noisy setting. In fact, I felt relaxed when we left and could honestly report he had a great time. He even smiled and greeted the other children. The only time I felt like screaming was when an older boy insisted on staring at Erik as I held him in my lap and fed him during the party. Now that I think about it, I'm sure Erik is beginning to look a little strange being spoon fed while we are in a noisy setting. He will not eat in this type of environment otherwise, and I take the opportunity to cram as much food in him as possible while he is distracted! He dove into the quiche and fruit salad! He does just fine feeding himself at home, although he is maddeningly picky about what he puts in his mouth.

There are eight inches of snow on the ground now. Finally. It is supposed to snow all week, and I am hoping the school district keeps things open for Erik.

Church Update: I received two voice mails from the deacon trying to assist me over the last week. The first explained that she had not received an answer back from the person she thought could help us, and the second was that she was unable to arrange anything at this point but would continue to try. I am getting the feeling that the high school girl declined to watch Erik during Sunday school. This is exactly why I feel like a problem that needs to be addressed. I spoke with Brian about accompanying Erik to Sunday school myself, but I predict I would leave church more depressed and more stressed out than ever. I have no desire to sit in that type of environment trying to be a soothing, calming presence when I am need soothing and calming (and perhaps some Jack Daniels) myself. I'm sure that once Erik attends more typical classrooms and events, I'll be more acclimated to it all, but right now it's an overwhelming, depressing challenge I am not ready to try. I am happy being immersed in just special ed for now. One step at a time. So far, this is not worth the trouble. We can teach Erik what we think is important in the comfort of our own home.

Our big screen television went on the fritz, and my best friend's husband, who is an electronics expert with his own shop, came to do surgery on it today while I played with his children. The parts we need will take a couple of weeks to arrive, so my BBC America afternoons are on hold. To entertain myself, I retrieved my copy of the recipe book called the Sneaky Chef in the hopes I can hide more vegetables in Erik's diet. I spent the morning whirling blueberries and spinach in my food processor, incorporating them into brownies (also whole wheat flour and wheat germ). I felt like dry heaving while I stirred melted chocolate and butter into the spinach mixture, but the house smells of nothing but chocolate now as they cool on a wire rack, looking like any innocent batch of brownies. I attempted the peanut butter and jelly muffins made with yam and carrot puree this weekend. Erik ate them but was less than excited about them, making the amount of work that went into them questionable. We'll see how these go over.

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.

Meet the Author

God puts resources there for you. You just have to find them; or, working with your neighbors, create them.

-- Barbara Munster (Author)

I had an amazing opportunity come my way recently and was brave enough to take advantage of it. One year ago as I sat on a horrifically bumpy flight to San Francisco on the first leg of our journey to Hawaii, I finished a book called How the Lilies Grow: Considering the Needs of a Developmentally Disabled Child). It was written by a local woman whose daughter had encephalitis as a child, a condition of the brain which resulted in severe developmental disabilities. The book told the story of this woman's journey through heart wrenching grief and healing before special education existed as we know it today. She found strength through education (specializing in social psychology and public administration) and created resources for her daughter and others through training those who work with the developmentally disabled and programs to empower those with special challenges. Her work still benefits people to this day, and she is still working incredibly hard to make sure opportunities exist for people like Erik who have so much to give but are often ignored. I consider her a true pioneer.

For some strange reason, I spotted her name in some literature that came in the mail from our church. Her e-mail address was there, and I had the overwhelming need to write her a note telling my story and how she had helped me through a rough time, hoping I didn't sound like some sort of weirdo. To my surprise, she replied in the same afternoon and said she would like to meet both me and Erik.

She came to my door this morning with a plate of homemade chocolate chip cookies. She was the opposite of what I expected. I expected someone who seemed...well, old, a little tired-looking, and frail. For one thing, she was my height, if not taller, and her voice sounded a little like a cheerful song. She would go on to tell me that she began singing in some local groups because if she hadn't, she would have simply cried all of the time. In looking at her, it was very hard to imagine this wonderfully strong, comforting woman ever cried at all, even knowing the hell she had been through. And, let me tell you, this woman has truly been through hell. Her stories of the mental health care system of the 60s and 70s will always remain with me. She reported that her daughter, now in her 40s, resides in a new apartment now, a far cry from the conditions at the state hospital back in the old days, attends a day program for those with special needs, and has someone who cares for her at night.

Unfortunately, I was supposed to meet Barbara between services at church last Sunday. I explained what happened and my resultant absence, and she reminded me that God isn't only at church. He is working through so many people in the world surrounding our family. While I talked with her, I realized that I am letting my expectations of how life should look clutter the path we are blazing for our son once again. Church is just one example. I envisioned it as a comforting, safe, loving sanctuary for Erik and our family, and it may be at some point, but it certainly isn't now, and I can't force it to be pleasant or easy. She suggested finding something else to recharge ourselves spiritually instead of killing ourselves to do what is "normal" and "expected." In other words, she very kindly suggested thinking outside the box in terms of what feels right and is good for Erik and our family.

I described my quest to find a balance between obsessing about WS 24 hours a day and denying it exists at all. She very knowingly nodded and said she found that taking a more objective look through education regarding the brain and her daughter's condition provided her much comfort and guessed that my medical background provided me some of the same reassurance. She's right. It's amazing what one step back will do. It can enable you to strip yourself of some of the emotion and rawness that can eat a person from the inside out. A lot of the hysteria, obsession, worry, and guilt can be disposed of this way, at least temporarily, for me. When I step back into my life with a clearer, more clinical picture of what we are dealing with, I can cope with the daily challenges more effectively and, more importantly, understand Erik and what he might be tackling developmentally or physically.

I confessed to her that I drive around neighborhood playgrounds in a bizarre search for one without children playing there just so Erik can have peace. I told her how I am unable to attend regular play dates or many activities the mothers I know do. I told her of the fear I have of taking Erik someplace new with new people and strange sounds. If she was thinking I was crazy, she certainly didn't let it show. She said that although we walk different paths, we are still walking together and offered to be at my side anytime I needed her.

As she stepped through the door to leave, she made sure to say goodbye to Erik, who seemed to instantly love her, and asked if she could give me a hug. I said yes. As Erik and I watched her drive away, I felt as if a prayer had been answered.

She was right.

God works through a lot of people out there in the world. To meet them, sometimes you just have to open your front door.

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, yada...my 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.

Why?

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

Pendulum

I am having a bad day. Not just sort of bad. Really bad. The kind of day when my grief feels fresh, cutting me open from the inside as if I had not been feeling it until this very moment. The kind that leaves me so weak I have no desire to fight the forces of gravity and want to sag to the ground in a pathetic heap. The kind of grief you might see on the faces of the women in exotic countries wailing on the evening news after a devastating loss. When I am ready, I may write about it. I haven't had a day like this in a long time.

Today I came home from a failed attempt to attend church with my family and began frantically scrubbing the insides of my house like a crazy woman. I scrubbed and scrubbed with various sponges and cleansers, trying to wash the darkness I feel down the drain. The tree has been lit, and its 1800 white lights are sparkling. My pine-scented candle is casting a warm glow on my precious set of antique wise men. My toilet bowls are bleached. My floor is pristine.

In my quest to create the perfect holiday home for our son, I have come to the realization I was wrong. You see, it is ME who is in desperate need a safe haven from the outside world, at least at this point in time. Some place I can feel what I want to feel or, in this case, not feel anything at all until I'm ready.

I am progressively more and more uninterested in dealing with how I feel. When I write, I have to feel everything all over again, and, well, that simply sucks. There are times I simply don't want to feel anything painful or profound at all. Times when I want to plod along and do mundane household chores without a thought in my head at all. Thankfully, I can do that here.

Unfortunately, there is nothing left for me to scrub or straighten.

A Place for Us

There's a place for us,
A time and place for us.
Hold my hand and we're half way there.
Hold my hand and I'll take you there
Somehow,
Someday,
Somewhere!

-- "Somewhere" West Side Story (1961)


I didn't make it until 6 this morning, but I slept, and I'm happy about that. My head and my muscles ache slightly from clenching my jaw and falling into the kind of laboring, thinking sleep I used to around the time of our diagnosis when life was more intense. I certainly don't feel rested, but at least my brain has rebooted and I can operate simple household appliances without injury once again.

I spent most of yesterday on the love seat with Brian and Erik running around me doing various activities. I did not nap but managed to eventually drag myself to the bathtub, put on clothes, and prop myself up to look lifelike. By the time it was necessary to apply makeup and prepare for the church meeting on youth ministries in the early evening, I had sagged again and barely had a pulse. I tried, nonetheless, to spackle myself with undereye concealer and smooth my hair, half of which which decided to take on the consistency of brown pipe cleaners. We drove to the church and walked Erik to the nursery, where I was previously told we were welcome to leave him during the meeting despite his advanced age. As soon as he saw where we were, he began bawling, even though the room contained only one babysitter and a completely silent little girl sitting at a little table eating a snack. Erik was simply beside himself. The back of his neck flushed into a shade of angry red as his growing anxiety gripped him. Brian scooped him up and thanked the caregiver. We then went downstairs to the youth center, a large, welcoming room containing a clean kitchenette, a short stack of warm pizza boxes, comfortable, chunky furniture, and a television on which they planned to show a Pixar movie for the older kids. Two noisy, chest-high boys played a brutal match of air hockey outside the door in the hallway. Erik ceased crying and accepted a slice of pizza. He ate it at a table with the help of a teenage volunteer. I began speaking with a couple women about the meeting, and they informed us that it would be held at another location down the road. I almost backed out at that moment. I certainly wasn't planning on leaving Erik blocks away, but we got into our car and followed their directions to a cluster of tall, craftsman-style homes poking up and forming their own blocky, trendy skyline. We parked and walked to the clubhouse. To my complete dismay, I saw the exact opposite of what I was expecting--mostly impeccably dressed parents our age enjoying wine and a variety of classy finger foods in a lovely setting. I looked down at my leather sneakers, the laces of which had been replaced with ones which were approximately three feet too long and were balled into a series of intricate knots that would make any sailor proud, wrinkled blue jeans, equally wrinkled cotton t-shirt, and mismatched jacket and purse. I already felt off-balance, and the meeting had yet to start! Brian and I both winced and laughed at our plight. Our pastor welcomed us inside and offered me wine from the bottles chilling atop a marble bar. Brian located the coffee. We affixed some preprinted name tags to our chests and were invited to sit at a table to socialize with unfamiliar members of our congregation, the bulk of which admitted they had only been in town for three years or less. They marveled at how unusual it was that I was a true native, having been born here at a hospital that met a wrecking ball long ago to eventually become the proud site of the Phoenix Inn. They also seemed to realize how annoying it might be to consistently encounter people like them who swell the population at an alarming rate and disfigure this once peaceful mill town. I halfheartedly tried to retain my cynicism and aloofness but warmed up to them quickly. We met a refreshing variety of people, including those who attended different colleges, were from different states from all over the country, or were actually Catholic for most of their lives. After a lengthy period of socializing, we were shuffled around and instructed to sit with more people we didn't know. I ended up miles away from Brian. We played a game of trivia, which was fun, and I sat across from a delightfully nerdy, obviously brilliant husband who occasionally retrieved his Blackberry from his back pocket, glanced at it, and whispered the scores of both of the football games we were missing to me. We celebrated quietly after each report. The woman next to me wryly told a shockingly inappropriate story about once attending a larger, box-type church across town, her horror regarding the aggressive children's program during the service they attended, and how her husband warned her not to drink the Kool Aid on their way out out of the building. I stifled my laughter under my hand, but I felt my eyes begin to water and tears threatening to spill from the corners. I simply couldn't help myself. Hilarious. Er, I mean, totally inappropriate.

Once the meeting started, we were provided stacks of pastel Post-It notes to write our ideas down on and later attach to a large board. There was also a sheet with an impossibly optimistic number of blanks to hold the names of people who wanted to assist with different types of children's activities, inlcuding the Christmas play. I suddenly understood the purpose of the wine. Have I mentioned lately how much I tend to dislike organized religion AND children? I marveled at the fact I was sitting in this meeting at all and yet how comfortable I was. I reached for a pencil and wrote: SPECIAL NEEDS SUPPORT. (COUNSELING?) I don't feel any sort of heavenly pull to lead a children's group or spearhead a major campaign for anything, but I can't deny there is something happening in me. I'm at a point where I could be of use to a parent who has found themselves in the dark place we were in a couple years ago. Something is telling me in a less than subtle manner to leave myself open and available. As the other parents spoke of their needs and wishes, it became obvious we were likely the only parents who would simply like things to be easier for a child with special needs. We don't have the luxury of pretending things are perfectly normal anymore. After the meeting I approached our pastor, and he expressed his desire to meet with us and find a comfortable place for Erik and our family to be.

The pieces are beginning falling into place now. I am beginning to see the big picture and where we might fit into it. While I sat in the midst of these very polished-appearing parents who seemed to have it all together, I was aware of the fact I would have been feeling very sorry for myself a couple months ago. I had my moments when I felt myself slip a little bit, but, for the most part, instead of despair I very clearly saw opportunity and a way to be of use to someone. I asked the pastor just exactly where the kids with special needs are. He admitted there were some but said the woman sitting next to him during the meeting would know more about that. There's obviously a gaping hole that parents like us are falling into. It would be so easy to give up and stay home. Nobody likes feeling invisible, and I intend to do something about that. I sure as hell felt invisible at one point. I tried to reach out, even having the associate pastor out to our home, but I was obviously unable to express myself or ask for what we needed. I didn't know exactly what it was we needed, anyway. I became invisible, and we gave up and stayed home.

However, that was then, and this is now.

When we returned to pick up Erik, he was sitting happily on a teenage girl's lap watching a movie. She reported that he "did amazing." He seemed positively tickled to see us, even clapping and laughing. He giggled like a school girl. He seemed less than traumatized by the whole evening, and relief washed over me.

Why can't it always be this easy?

Eternal Love and Waterproof Mascara

We made it to church today. I worked out quickly and showered, and then our whole family ran frantically around the house, wet from the shower and in different, very shocking stages of dress. We would barely make it on time. It turns out the clothing I wore to church last time is now the size of a circus tent on my new body. Today was the very first day I was not upset about being late for anything.

We haven't been to church in some time, but we are trying to get there more often. Although I consider myself spiritual, I am definitely not a typically "churchy" person and often struggle with the concept of organized religion for a variety of reasons, none of which I will go into here, but I am fairly comfortable attending the church I grew up in when I go. I feel it is extremely important Erik feels loved and accepted, and Brian and I both agree church will be important as he grows. Who knows? Maybe I'll learn something along the way.

We dropped Erik off in the nursery and received an electronic pager that would summon us back to the nursery if necessary. We were ushered to an empty space in a pew, and the pastor instructed the congregation to learn the names of those around us. This is normally a nightmare for me, but my new self-confidence has made things much easier. I exchanged pleasantries with the woman next to me and listened as the service began, noting the satiny banner behind the altar was the same one I had picked as the backdrop the day we were married over six years ago. It features a brilliant, electric blue cross. My favorite color. The pastor began to walk the width of the stage and get himself into the spirit of preaching. I thought, dangit, this new guy gets me every time, but surely this time would be different. There would be no talk or videos of the disabled, hymns with seemingly hidden personal meanings, or messages that seemed to be meant for me and me alone. Surely God is too busy to send me these messages each time I attend church these days. I have sat through many sermons in that same sanctuary, largely unaffected but appropriately prayerful, and walked out completely dry-eyed with a cookie in my hand. Hundreds of times. Today would be no different.

We attend the more contemporary service--not because we prefer it, necessarily, but because it is early. They tend to play more modern Christian music, a lot of which I don't necessarily care for but I am warming up to. As I attempted not to be distracted by the one very passionate, animated woman in the front row dancing and gyrating unlike any other Presbyterian I know, I realized there was an old hymn playing. One of my grandfather's favorites. "How Great Thou Art." Okay, I thought, that's a little strange during this service. I enjoyed the warm fuzzy and sang very quietly so as not to alarm the lady standing next to me with my desperate search for the correct octave.

And then the sermon began. The pastor began talking of the story "Eternal Love" by Karen Bender. He explained the story as being about parents of a developmentally disabled daughter in her 30s who finds love with a developmentally disabled man. It wasn't so much about the love between the two but more about the mother and her relationship with her child. You see, it was her job for years to care for her child, and she set her marriage and even her personal needs aside for years. Although her husband was woefully neglected, he patiently waited for her to come back to him. She felt off balance because she would no longer feel like she had control of what happened to her daughter. She couldn't imagine what she would do if she had to let go.

You have got to be freaking kidding me.

It wasn't long before I realized I was going to cry. I can cry quietly until my nose decides to emit rivers of snot, after which it sounds as if I am greedily consuming a 44-ounce cherry Slurpee. When I saw the woman on the other side of Brian crying even harder than I was, it only made matters worse. By the time the pastor reached the part of the story about the new bride running to her parents' hotel room for her mother's reassurance on the wedding night, I was a complete mess. The mother reassured her daughter that she had their unconditional love and approval and then watched her go happily back to the groom. She then allowed her own husband to hold her and comfort her for the first time in years.

Oh, God.

This is the point when the lovely woman next to me in the peach blouse plucked a Kleenex from the pocket pack in her purse and offered it to me. I accepted it gratefully, and as I blew my nose, I silently granted her permission to refrain from holding my hand during the closing song.

I survived the service, and we headed down the hall to pick up Erik. We were told he had been taken to a private prayer room (I didn't even know we had those) because the environment was too loud and he became upset. I must have looked very alarmed, as I was instantly offered assurances he was fine. I plucked him from the arms of the girl who was holding him, and we made our way out into the sunshine, feeling a little bit more connected with each other and the world.