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?

Adapting

There is something about talking to my parents that makes me feel like I'm 12 years old all over again with no control over my emotions whatsoever. Over the years, I have cried to them about everything from junior high school gossip to my career choices. Strangely, it doesn't seem to matter why I have called or stopped by to see them in my childhood home. If something is bothering me, I look into their faces and it all spills from me, whether it's something I intended to share or not. I could call to ask my mother about how to best thicken gravy and end up sniffling into the phone and talking about something much closer to my heart. However, when I step out their door or hang up the phone after visiting with them, it seems that I never fail to feel better and am usually smiling. I don't know what I would do without them.

For the first year of Erik's diagnosis, it seemed that every time my parents came to our door, I was in the middle of a big, ugly cry. It was part of my daily routine. This went on for months and then almost a full year. A few months ago when my mother came to pick up Erik, she said it was nice I wasn't crying all of the time anymore. Now that I think about it, I'm not sure why I didn't succumb to simple dehydration. I did cry a lot, and it was probably very difficult for her to see me that way.

Strangely, I now find myself in tears less than I ever have in my life. My sloshing reservoir of sloppy emotion seems much lower than it used to be. However, I won't worry about this phenomenon unless the tears stop completely, in which case I will declare myself completely dead inside and will check into a facility with a soothing-sounding name and baby blue paint on the walls. I'm simply a more seasoned, weathered version of my former self. There's good and bad that comes with this. I'll never be the same. However, I don't sweat the small stuff so much anymore when it comes to my child. The other day I was checking a label on something I was about to share with him as a treat. My eyes quickly scanned for the words "aspartame" or "saccharine" when I suddenly thought, "Oh gee, Nance, one spoonful isn't going to kill the kid. He's missing 25 freaking genes for Pete's sake. I think artificial sweetener is not his biggest problem. Let it go." How awful is that? I haven't worried much about terminal cancer or the normal variety of sudden death in my son. The usual worries that accompany motherhood are still present, of course, but I hardly feel them. It's sort of like trying to tend to a paper cut in a web space between your fingers when someone walks up to you and suddenly kicks you as hard as they can in the shin with the tip of a steel-toed boot. Oh, sure, the cut is still there, but you sure as hell aren't thinking about it anymore. All you can think of is the throbbing pain in your leg.

Now that the tears have dried to an acceptable level to where I can enjoy time in public without rivers of snot running down my face, I find I am actually thinking clearly and honestly. At least, that's my perception of myself. You may think I'm crackers, and I'm okay with that.

Today I was talking to my mother as Erik made us laugh over and over fetching books for his Boppa to read to him and showcasing his wonderful personality. As I was talking, out came the thing that was bothering me most at the moment. Amazingly, my eyes remained desert dry. I confessed to her that I was terrified because the time was coming when Erik wouldn't be cute anymore. In short, I asked her, "Then what?"

There was no hesitation on her part. She said the perfect thing to say at the time, which was, "I don't know. He'll be different."

Neither of us know. Since cute is pretty much what he is and does best at this point, the thought does indeed terrify me. Yes, I keep telling myself I will always love him, but I can't imagine myself loving him any more, and I'm now questioning my own capacity to love him in the future. After all, motherhood wasn't the most natural thing in the world for me, and it took months to bond with him as a baby. I have always wanted to give this kid the moon, but sometimes I just don't know how.

This is the reason I fear meeting other WS adults. This is difficult for me to write, but it's the truth, and I refuse to pull any punches here. I have to face my fears, as my boy is growing like a weed. At a BBQ we attended last weekend, he was easily taller than a fellow partygoer who was 3 years old.

I'm afraid of losing cute.

Will it happen gradually, or will we look at him one morning over the breakfast table and see a lanky stranger? I believe Brian and I have been quietly mourning the passing of Erik's baby phase. I sat on Erik's little bed the other day with the blue box I keep on the top shelf of his closet that holds a random collection of things I put there for safekeeping. This includes the notebook in which I recorded each hellish feeding for three months. Okay, so that's not a good memory, but struggling along with such a precious, tiny creature is a powerful memory I don't want to let go of. I want to keep the memory of me and my baby locked together trying to survive yet more wee hours of morning, both of us in excruciating pain with tears on our cheeks. I returned the notebook to the box and retrieved the powder blue pacifier that was always in his mouth as he slept and kept the burning acid down in his throat. My fingers passed over the worn leather slippers with the smiling monkeys on them and the jagged holes from crawling and dragging both of his big toes, the cards we received around the time of his birth, and the little photo book my mother made to document that first year of his life during which we were steeped in ignorance and before I set foot in this strange, new world. It was hard to close the box, but keeping it open was even more difficult.

I came to the conclusion that these kinds of changes generally happen gradually and mercifully. After all, that's how my baby disappeared. His legs began to lengthen and his hair began to darken. The chub in his cheeks began to drain away, and he began bonking his head on things around that house that were formerly safely out of range. Now there is very little baby left to see. There are times I creep quietly into his room and watch him sleep, when I catch just a glimpse of my baby boy with his lips slightly open and his body curled up next to his stuffed animals.

I have been thinking a lot about change lately. For example, the whole concept of pregnancy, while it was something I wanted desperately at one point, created in me a gigantic case of the heebie-jeebies before my personal experience with it. I read about the weight gain, the fact I would have 50% more blood coursing through my veins, and how my baby would compress various internal organs, causing me great discomfort and trouble breathing. I went into it knowing these things and was very pleasantly surprised. Because these changes were so gradual to me, I hardly felt a thing. Getting up 10 times at night was perfectly natural and acceptable. People I hadn't seen for weeks were amazed at my increasing girth, but the changes were indiscernible to my own eye. When I answered the phone gasping for oxygen after a trip down the stairs, someone asked if I was okay, and I had no idea what the caller was referring to. A friend of mine found it quite amusing when he told me I didn't look pregnant at all and I enthusiastically agreed with him. Apparently, he was being sarcastic! Because of the gradual nature of these massive changes, there was very little discomfort, and I was able to enjoy a full 41 weeks of pregnancy. I am so thankful for every moment of this experience.

I imagine the changes that come as Erik grows will continue to occur slowly, too, allowing us to adapt to any new challenges that come with having a growing boy who is different. I imagine that even at this point, challenges that likely look massive from the outside are likely much less overwhelming to me, as I am accustomed to them. I anticipate many new challenges for us to face and adapt to. In the meantime, I will face my fears as best I can. What is most important is that looking at this kid makes my heart swell with love.

I just pray that I never lose that.

Facing the Future

As most of you know, I'm a big chicken when it comes to meeting an adult with WS. I'm technically quite ready now, but it's still not something I'm excited about. Why? I have been thinking about it lately, and I have concluded that even with the therapy appointments, home visits, and special ed, living in complete denial is still an option at this point. I have grown accustomed to these things, and they are normal to me if I don't stop to think much about them. Erik can initially pass as a typical, adorable toddler quite easily if his orthotics aren't visible and he is on the quiet side. As he ages, however, WS will become more apparent in several ways. I admit that the fact WS will become more apparent in his facial features used to rip my heart into pieces. The fact that he will look less like us and more like the face of Williams is hard to bear, but I have come to terms with that, for the most part. I am comforted by the fact that he will retain his personality and sense of humor. He will, of course, likely always look a lot like me and Brian, too. I keep telling myself that he will always be Erik, through and through, and that my feelings for him will only intensify, if that is even possible.

My friend Shaena carries a photo of Erik in her wallet, and when she was on vacation, a member of her extended family whom I have never met saw it. Without knowing our story, she immediately knew Erik had WS. It was the first time someone had "read" Erik's face since I did the very first time before our diagnosis. However, she was quite familiar with this face. Her 1-year-old brother died of severe complications of WS. From Shaena's account, it sounded like this girl felt almost as if she had seen a ghost and that it was a little bit of a shock to her.

The WS convention is next year, and I am going to be there. The thought of being surrounded by those with WS and their families is more thrilling than anything I could imagine, yet there is fear in me, too. I have no doubt it will be a completely overwhelming, bittersweet, emotional experience I will remember for my lifetime. By that time, I'll be as ready as I will ever be. I will hopefully meet some of the wonderful families I have grown to love on line and be able to put my arms around them for the very first time. I think if there is one thing we have learned in our blogging neighborhood, it's that it is indeed quite possible to miss someone whom you have yet to meet.

My friend Aspen met a young adult with WS recently, and she wrote a beautiful post about the experience that has haunted me for days now. She mirrors a lot of the feelings I have about the possibility of experiencing this for myself, and I hope she doesn't mind me sharing her experience with you.

I miss you, Aspen -- and I can't wait to meet you.

Read about her experience here.