Erik Quinn: The Heart of a Family: October 2006

Tuesday, October 31, 2006

Sand and Surf

We are back safe and sound from a fabulous extended weekend at the beach. Saturday the three of us swung by my grandmother's house in the valley for lunch, where we ate and watched football with my grandma, aunt, and uncle. Grandma gave Erik a big, red bucket and shovel for the beach. After lunch we headed to Eugene to pick up Shaena and her baby from a tailgate party at the University of Oregon game. Of course, both of our cell phones mysteriously failed to connect around the stadium, so we couldn't contact each other. There were thousands of people and cars, and we couldn't get remotely close to the stadium, so Brian parked in an adjacent neighborhood and walked in to find her in the drunken, barbecue sauce-soaked tangle of tailgate parties (a seemingly impossible task). Erik and I stayed behind, but he immediately began to fuss, so I reluctantly deposited him in his stroller and began walking down the street toward the stadium, rolling through a thick layer of yellow leaves illuminated by bright afternoon sunshine. Miraculously, just minutes into our walk I spotted Brian, Shaena, and baby Samantha coming towards us on the busy sidewalk. We made it back to the Jeep together, and Brian installed Sammy's car seat next to Erik. From there, we headed off to the coast. Andy, Shaena's husband, planned to join us after the game. There was only one moment all weekend that completely depressed me, and that was the last half hour of our journey, when Erik decided that Sammy's coos and laughs, although they were very quiet, either hurt his ears or frightened him. Although he is doing much better around toddlers and older kids now, babies apparently still freak him out. Since he has been doing so well and seemed happy the first part of the drive, I was caught completely off guard. The last half hour of our ride, Erik was inconsolable, sobbing so hard he began shaking and gasping. What really bothers me is the fact that the other parents around us, of course, feel terrible when Erik does this and feel obligated to hush their children when they aren't that loud to begin with. Our friends never fail to be understanding and calm about this unique and frustrating situation. I hold on to the fact that this seems to be getting better over time, although Erik will always be sensitive to certain noises. Once we arrived and I spent some time alone with him in the car, he was much better around Sammy. He still clung to us in her presence sometimes but had his shining moments around her. He obviously liked her, as he smiled at her, talked about her, and looked for her when she was not in the room, saying her name like Rocky Balboa would ("Sam-MEEEE!").

Our two-story cottage was right on the beach and featured a full kitchen, living room, two bedrooms, and a bathroom. It had a great view. Shaena and I drove into town to pick up groceries at a little store where nobody made eye contact with us and the checker had some sort of unidentifiable, pruritic rash. Of course, we had a blast just being out and about together like the old days (only this time we were buying baby food). Upon our return, we made ourselves comfortable, and Andy joined us after the game. We eventually put Erik down in his playpen, and he slept like a log. Actually, we all did. Saturday morning we lounged around, baked cinnamon rolls, and watched television until Erik finished an almost three-hour nap, when we went into town for fish and chips. The cod filets were as big as my arm. I ate every crumb on my plate and when the waitress asked how it was, I smiled and told her it was terrible. Erik, of course, charmed all of the people in the restaurant he could see, and Sammy greeted the people in the next booth. Both kids did so well. Erik created some artwork with the impressive selection of crayons the waitress provided. After we ate and I struggled to get Erik's stiff brace-legs free of the high chair, a little old lady on whom Erik had previously worked his magic stopped me and said, "I'll take him home with me and keep him. He is so handsome." She seemed almost determined to tell me this in a surprisingly serious tone. My heart twinged, and I thanked her. Erik and I were stuck at home for months of his infancy, and I never really experienced much in the way of strangers fussing over him. Now that he is no longer a baby and is becoming friendly, he is bringing people to me and more than making up for what I missed out on. It is sort of magic, and it is just what I need these days.

As for the beach, Erik loved everything about it. He even loved saying "beach" and "ocean." He charged toward the water, and Brian swooped him up every time the waves threatened to envelop his shoes. The sky was robin's egg blue, and the wet sand reflected the light and wisps of clouds like a giant mirror. Andy, Shaena, and Sammy put their footprints in the sand and got some beautiful photographs of them.

I noticed this was the very first time the ocean didn't seem massive to me. Maybe it was because the weather wasn't angry like it is a lot of the time or because I had my hands full with a small child. I went out alone the last night and watched the orange ball of sun sink behind the contour of the earth millimeter by millimeter until it left a fading, tangerine-colored smudge above the ocean. I found myself thinking about how there was no guarantee the sun would come up in the morning to warm us again. I suppose that's an ominous thought, but I was completely comfortable with it. I know I need to enjoy things moment by moment. If there's one thing I have learned in the last two years, it's that there are no guarantees at all. Everything that seemed solid as stone around me in my life seems very temporary now to me, like a transient but beautiful mist. I can't see myself taking much for granted ever again. The weekend was definitely perfect.

Friday, October 27, 2006

Shoe Salesgirl

Finding shoes that fit over Erik's orthotics seems to be about as easy as finding the Holy Grail. I was given this warning by the orthotist before I began this endeavor. A big thank you to Ms. T in parent group (the woman formerly known as "Rickets Girl") for e-mailing me information on special footwear. Surprisingly, there aren't many companies who offer these kinds of shoes. I ordered a pair of the Hatchback Elites in white for Erik today. They cost as much as a small SUV, and there is one model with the thrill-a-minute choice between blue or white. However, I am tired of the cheap shoes I bought that don't fasten and hang open, as the Velcro strips attract every fiber of cat fur, nose hair, dryer lint, and God knows what else. His shoes looked acceptable at first but now look like pieces of tape that have been hastily affixed to and subsequently ripped off a hirsute Wookie. With jeans on, his braces are barely visible, and in my quest for a feeling of NORMALCY, I would love to have a pair of shoes on my son that actually fasten and look like shoes, not flattened, dirty Styrofoam coffee cups on the floor at a church potluck. Is that so much to ask? I will have the answer to this and many other intriguing questions in a mere 7 to 10 working days. I will give you an honest review upon receiving them. Here's the website for those of you who need this kind of thing (apparently, there are only three of us on the entire continent). What is great about these shoes is that they open in the back. It's absolutely genius!

Thursday, October 26, 2006

My Brain Hurts

It seems that when my body has time to fall apart, that is precisely what it decides to do. During times of great stress in the past, I would hold myself together beautifully until a day off from work, the morning of which I would magically awaken with something like malaria or Hantavirus. Yesterday I was feeling much better emotionally, although I was still a little sullen, and I had a decent day. Therapy went well, and Bev listened to my concerns about my son chasing moving vehicles and the dangers that go with his condition. She told me his autism-like obsession with wheels would pass, but it was really phrased as more of a question than a statement. I detected her voice going up in tone ever so slightly. I don't know how long this will last, and neither does she. I don't imagine my son will be 35 years old sitting on the asphalt in a parking lot, hugging car tires, and screaming "WHEELS!" but I could be wrong. I have been wrong before.

I was really looking forward to today, which would be a day without therapists. I would spend the first half of the day with my son and the second half of my day/evening working. Wrong. I was awakened by the Mother of all Headaches at 5:30 a.m. My eyes were watering from pain. It was disappointing, as I actually got a decent night's sleep on my own. I might have slept too hard. My husband took one look at me and offered to stay home. I do not accept help very graciously, but today I thanked him and immediately went back to bed after taking some medicine to knock myself out. I slept for about an hour and then got into a shower so hot it would kill live lobsters. That felt wonderful. Brian went to Safeway to buy two bottles of ibuprofen (one generic and one Advil) for me, a bottle of Excedrin, a bottle of Aleve for his broken ribs, and a half rack of his beloved Code Red Mountain Dew, now a bargain at 25 cents a can on sale. The checker looked at him quizzically and tentatively commented, "Have a nice day..." I sent him back to work, as I am amongst the living at this point. Sometimes I need just a couple hours to fight these off. I start my headache diary today, as they are becoming a horrible problem, and I don't have time for them. If my doctor told me today that I had a brain tumor, I think these days I would respond, "Well, of course I do." Luckily, I think I am afflicted only with age and changing hormones.

Erik is doing well. We were in the car going to Gramma and Boppa's this week when I heard, "" coming from the back seat. His memory is obviously amazing, as he knows the words in many songs already. I can stop singing, and he will say the next word, although he isn't actually singing yet. We did do some LA LA LA LAs in the car yesterday, and he enjoyed that. He also has some of his books memorized. He obviously knows his ABCs, although he hasn't said the whole alphabet yet. Again, he will say a couple of letters if I stop reciting the alphabet in the middle. There are made-up words that make him laugh for some reason. We yell, "DAD-DOOOOOOO!" all of the time for no reason at all. He thinks that is quite amusing. When I taught him how to say "banana," I said it like an announcer at a wrestling match might scream it over the loudspeaker (BAAAHH-NAHHHH-NAHHH! LET'S GET READY TO RUMBLE!). That is how he says banana now. He is also very fond of saying, "PEEEEEE-YOUUUUU!" with great panache upon soiling himself, which I think is the funniest thing I have ever heard. He still does not put two words together much but can say many single words. He knows so many words now, I can't name them all. He will say, "Buh-bye" and "Dada," but he won't say, "Buh-bye, Dada" quite yet. There are times I look at him and know exactly what he wants me to say or do, but I am trying to get him to ask.

We are spending the weekend in a beach cottage with my friend Shaena, her husband Andy, and Baby Samantha. Shaena and I could have fun anywhere. She appreciates my very black sense of humor, and I admire so many things about her. She inspired me to strike out on my own, buy my own home, and be independent for as long as I was. Her comment on my last post reminds me that it has been 18 years since we met on Halloween through a mutual friend. I was the copilot in her Firebird on many weekend nights. We would cruise the pool hall parking lot blasting AC/DC or Vixen and try to stir up the biggest commotion possible with the biggest hair possible, thanks to can after can of Aqua Net hairspray. I think both of us are responsible for the giant hole in the ozone layer (sorry about that). I especially enjoy getting Shaena to laugh and squirt her drink out her nose. She is my very favorite mark, as she also emits the cutest little snort if the joke was especially funny. Since I have known her for so long, I know how to effectively push her buttons, and she has learned to postpone sipping her beverage until I am finished talking. I can still get her, though, if I fake her out, talk really fast, and time it just right. In turn, she brings me to the point of urinary incontinence with her own jokes and snappy movie lines she has memorized to recite during times that are in desparate need of lightening up. I will, of course, take photos of our outing. Erik has never seen the ocean, and I am hoping the weather will be nice enough that we can take a walk on the beach. Of course, I'll have to remove Erik's braces so he doesn't rust. ;)

Hey. I think my headache is finally gone.

Tuesday, October 24, 2006

Breaking Point

I'm in a midnight black mood today.

I'm not a little miffed.

I'm not a little huffy.

My hide is not just slightly chapped.

I'm furious.

Today I feel alone. I feel like the only person in Erik's life facing this disorder head on. This may or may not be true, but it is how I feel. Why? I am the one ordering the videos (and forcing people to watch them), sitting in depressing parent groups every week, dealing with therapists, going to appointments, taking care of 95% of his special needs, having my interaction with him scrutinized, and spilling my guts about this on line for everyone to see. Everyone else gets happy-fun time with my son and seems surprised when I explain how hard this is on me. All day long I am the one worried about which shoes will fit over his orthotics (and standing in stores making him cry as I force them on), calling in medicine, trying to find pants without giant holes in them from him crawling to chase spinning or rolling things, keeping him from plunging his hands into the wheel wells of cars slowly rolling by, and wondering how strangers will react to him climbing on them when let go of him to open my purse. Strangers now have their hands all over my child when we are out. When I try to forget about Williams, my phone rings with someone wanting to confirm an appointment or a therapy session. I don't have the luxury of forgetting. Believe me, I have tried. I am the one doing research and printing out lists of tests for the physicians who have never heard of what my child has. I am the one telling the therapists that his brain doesn't work the same way as the other children in his class when they don't understand why he can't do a simple task. I am the one who has to fall to pieces every day and pick myself up. ME. Sometimes this all comes crashing down on me. It is not possible to be Ms. Merry Sunshine 24-7 and thank God for "the disorder to have if you have to have one." I am NOT thankful for Williams syndrome.

Over the last couple of weeks I have seen Williams manifest itself in my child in a colossal way. There was no transition period. There was no time to prepare for this transformation. He went instantly from a slumped over, drooling infant to a gregarious, stranger danger-free little man, and people are so busy jumping up and down for joy that they can't see the fear in my eyes, what a challenge this has been (it gets harder every day), or how dangerous it all is. When I try to explain how scared I am, they don't seem to hear me or perhaps silently think I'm a terrible mother for wanting my son safe again in my arms when he has no interest in being in my arms anymore and struggles free of me to explore the world without fear. I have been told several times that I should be thankful he is going to be a handful! I feel awful because I'm NOT thankful. I hope God and the world will learn to forgive me. I have been warned not to talk to the other WS mother in town with a grown child unless I want the absolute truth in extremely blunt terms. Maybe that should be the next step for me. I suspect we might have more in common than I formerly imagined. I know in my heart what she will say. I know she will tell me stories of her child being told not to run into the street but seeing her child run out in the street seconds later anyway because she said she understood but didn't truly understand the concept. Children and adults with WS often say the correct words and seem quite eloquent but have no grasp of what the words they are saying actually mean. Yes, I know my child is simply delightful. Yes, I know how lucky I am to have my child alive and healthy with this disorder. Yes, I thank God for this kid with every fiber of my being. Yes, I love my child more than life itself. He is wonderful!

Excuse me for being scared shitless.

I need time to get to know my son yet again, and I was relieved to hear that Brian is able to see where my fear is coming from and what might lie ahead for us. I looked at Erik this week and saw glimpses of a kid I don't know anymore. That is not a good feeling. Please be patient and let me transition into this period, even though it isn't a pretty process. If you don't understand where I am, that's okay. How could you? I don't want you to point the bright side of things out to me at this point because I am currently crashing head on into a brick wall spray painted with "worst case scenario" on it and am fully aware of where the bright side is. It's the only way I can move on with things. That's how I am wired, and that is how I have made it this far. That is how I am going to learn to keep my son safe and happy.

Please be patient. I'll make it.

I promise.

Sunday, October 22, 2006

National Public Radio

All Things Considered, October 14, 2006 · Fairy tales tell of wee folk who spend their lives singing and dancing. A rare genetic disorder called Williams Syndrome lends scientific support to the legends. Drummer Jeremy Vest is among those who are diagnosed with Williams Syndrome.

(copy and paste link above and click on "listen" button at site)


This weekend is slipping away too quickly. I awoke at 4 a.m. yesterday and staggered upstairs to work. Not very many patients know their medical records are generated by transcriptionists wearing a bathrobe, fuzzy socks, and hair in a giant bed head swirlie. Heck, I reckon some of them are probably stark naked (the climate here makes that option available for only a brief time). I previously set my own rules for working at home, and one of them is to appear put together during the week with casual but presentable clothing, hair, and makeup, even though there are days I don't see anyone but my family. However, during the weekend, anything goes. It's my little way of rebelling these days. Before I was married and lived alone with Gracie kitty, I refused to work at home for fear I would never get dressed and slowly go insane, wearing a tin foil hat, disinfecting the house a la Howard Hughes, and talking to myself. I learned that the talking to myself part was unavoidable but I still blend nicely into social situations when it is necessary, even with germs present.

Once I got things done yesterday, the three of us hung around the house, and I found myself getting a sickening headache. Erik and I both decided it was naptime, and I had almost met the sandman when the Jehovah's Witnesses knocked and then rang the doorbell three seconds later. Brian informed them through slightly clenched teeth that we were sleeping. At that point, I reluctantly gave up on sleep, took a hot shower, and headed for the couch, napping off and on under the influence of a rather strong pain pill in front of various football games until late afternoon, when I felt much better. Kathy, Alan, and Dominick then called to invite us to a nearby Mexican restaurant for dinner. In 20 minutes, I slapped on a layer of makeup, packed the diaper bag, and joined the family in the car. Erik had been fussy off and on all day and had tried our patience a bit but settled into his high chair at the restaurant to enthusiastically greet every patron that passed by as if someone was paying him to do it. He smiled pleasantly at us all, and every time I would look toward him, he would smile at me like it was for the first time and he was genuinely surprised to see me there. It was almost a bit much, but it made me laugh. The boy has learned how to work it. He definitely doesn't smile that way at home, and nobody would have guessed that just an hour before he was soggy and screaming because we wouldn't let him put his upper body in the toilet. When another group of people sat down at the table beside us, Erik waved and waved and waved, even though they were approximately three feet away. One man smiled and waved back, and Brian warned him that Erik would wave at him for hours. In fact, I don't think Erik stopped for the rest of the visit, but the man and his friends didn't mind at all. Dominick and Erik polished off the bag of Cheerios I brought with me, and Erik even tried some beans and cheese without any ill effects. I didn't have to open one freaking jar of nasty, pasty Gerber dinner. It was a very pleasant evening, and Erik seemed to enjoy a hug from Dominick at the end of an evening.

Blogger seems to be giving me permission to upload photos this morning, so I am posting a couple more of Erik's birthday weekend. I wanted to share photos of Erik discovering his cousins all over again with a brand new appreciation for how fun they can be. It was honestly an amazing weekend, and I am still in complete shock at how much he has changed in a matter of days.

Friday, October 20, 2006


Welcome to post #101.

All of the posts here are handcrafted and brewed to perfection using my own distinctive formulas and using only natural ingredients. It has been quite a journey so far, hasn't it? Thanks to those of you who have continued to read my thoughts and kept our family in your thoughts and prayers.

Erik's therapist stated Thursday that I seem like a different person than I did seven months ago. She commented on how playful I am now and seemed genuinely surprised by this, even though she met me at the same time we found out Erik has Williams' syndrome. It's comments like these that make it obvious to me that unless you are in our shoes, even if you're a professional, it is nearly impossible to comprehend what this experience has been like for my family and the effort it has taken to pick ourselves up and move on. Unfortunately, moving on means living with Williams' syndrome on a daily basis. There is no "getting over" a birth defect, as it is always present, affecting how our child views the world and the way he gets around in it.

It is an extraordinarily lonely feeling to be handed a devastating diagnosis such as WS. You must walk calmly out of a building, get in your car, and go home with it like a time bomb wrapped in brown paper, knowing your life has changed forever, although you don't want to believe it at first. It feels like a new, silent member of the family sitting next to you that can no longer be ignored. Since that quiet, rainy drive back home over the mountain on March 13, 2006, with our new diagnosis, we have learned to cope with its presence and have become capable of feeling some joy again. There is so much joy with Erik in our home. However, seven months ago, I was living in a black fog and had no desire to be "playful." Who would? Anyone who met me at that time met a complete zombie. Even my son was less than playful at that point, as WS rendered him unable to interact much with me or the world. There was not much to smile about, as far as I was concerned. When I met the people at Erik's school, the dreams I had for my son had been completely destroyed. I felt it was necessary to get to know our son all over again somehow and learn to appreciate him for who he is and who he will grow to be. If you think you can look at your child the same way after a blow like that, you are in for a rude awakening. Everything changes. You need a new plan of attack, and you throw yourself into being an advocate for your kid. You watch your friends' kids surpass yours and feel even more lonely. You want to stay home and shut the world out. It's hard, and there are some days you want to throw in the towel. It's exhausting. It's depressing. It's heartbreaking. Just when you succeed at one challenge, your child grows and there is another one right behind it like hurdles on a track. However, it's also very rewarding. Erik is now giving so much back to us every day in the form of smiles, being a comedian, and asking for a cookie every 30 seconds. Despite our struggles, I have a lot to smile about these days.

I suppose I am a different person, but not in the way that the therapist meant. I'm stronger, and my priorities are different. I no longer apologize for tears, laughing too loud, or being flat-out pissed. There are still many days when I feel so weak, but for the most part I feel stronger than I ever have in my life. I can thank Erik for that. I have never been so in love with anyone in my entire life, even though it took a long time for this love to blossom completely in me. I believe it is pretty obvious how we feel about each other by just looking at us. Seven months ago, I was just beginning to fall in love with my 17-month-old, even though I loved him very much already. I simply had no idea what my heart was about to experience.

I'm not sure what I will do to mark the anniversary of our diagnosis. I see that other people take note of the one-year mark, too, and consider it a celebration of sorts, even though it was a devastating day for most. To make it one year is to be celebrated, even though there are definitely undertones of sadness. I will follow the example set for me by the amazing new friends Erik has brought to me and simply feel what comes to me on March 13, 2007. I'm sure by then I will find myself even more different than before, and I am anxious to see what being Erik's mother will bring next. I'm looking forward to that anniversary, but now that I have lifted my head up and realized that we are over halfway there, I must put my eyes back on the path and ready myself for tomorrow. One day at a time.

In the meantime, I'll start on the next 100 posts, as writing seems to be therapeutic, at least for now. I hope you enjoy the ride, and I am so thankful I am no longer feeling so alone.

Wednesday, October 18, 2006

A Little Sensory Integration Disorder Humor

Ten Things That Confirm You Are a Parent Of a Child With Sensory Issues

1. Instead of lists to organize your schedule, you start doodling Mayor Johnson pictures.

2. A statement like "Our OT ordered AIT, ASAP, to help with SI" makes perfect sense to you.

3. You order at a restaurant not necessarily what you have a taste for, but according to food color and texture.

4. You go new clothes shopping at second-hand shops (no breaking in necessary!).

5. The barber tools required for your child's haircut includes sedatives, a flashlight or night vision goggles, and a scissors silencer.

6. You break into hysterical fits of laughter when the doctor sends in only one nurse to give your child his immunization, and she exclaims "It will only take a second!"

7. Seven different meals need to be prepared for your family of four.

8. The thought of your child's upcoming dental visit gives you anxiety attacks that require medications and therapy.

9. You do a dance of victory after dry-kissing your daughter and she doesn't wipe her mouth afterwards.

10. You start wearing your socks and underwear inside-out because it really does feel more comfortable that way.

Tuesday, October 17, 2006

Taco Bell & OxyContin

Erik and I just got back from our respective classes/therapy. I made a little detour through the Taco Bell drive through for some pintos and cheese and a bean burrito on the way home (there is something about Erik's school that makes me want to eat giant amounts of food at 10 a.m.). Erik was not as animated as I had hoped he would be around the other kids but did fairly well and drew a picture for me that resembled a giant plate of blue and green spaghetti noodles. He had fuzzy dots of the same colors on the tips of his fingers. Bev said he had some difficulty getting the caps back on the pens, which made me laugh (inside), as he hardly knows how to operate a pen, let alone put it away. I told her we would work on that. I did wonder out loud if the WS makes it hard for him to see how two pieces of something fit together. My bad mother alarm went off as I realized we have not gotten his crayons or pens out in some time, and, no, the three orange crayons the waitress scooped up off the crumb-sprinkled floor at our craptastic local Denny's don't count.

I realized with horror today at the parents' group that I have not bothered to learn any of the parents' names, although I easily remember their kids' names and conditions. What's even more horrifying is realizing I have employed the technique of remembering them by giving them horrible, sometimes politically incorrect nicknames, like I used to do to people in bars and airports. The only problem is that I will see these people again. I don't do this with a mean spirit or even with any intention whatsoever most of the time. I certainly cannot refer to them as "Marlboro Man" or "Rickets Girl" -- out loud, anyway. I now find myself laughing at their jokes, and they end up speaking to me for most of the 1 1/2 hours we are together. I think it's time to take down the ugly wall around me. Today Rickets Girl offered to e-mail me information on special shoes that fit over orthotics. The pregnant woman I knew from prior sessions (no nickname required) brought in her 2-week-old baby and husband (a good friend of my brother's I have known since kindergarten). The baby was beautiful. Although my chest ached a little bit upon seeing the baby, I had no desire to go out and have another of my own. I felt genuine happiness for them. Of course, it is far easier to feel happiness for them when I know they went through struggles of their own mirroring our own with their first son. Their FISH test was negative, and their son has never been diagnosed with anything but is so similar to Erik in terms of size, eating difficulties, and behavior. The husband admitted having another child was a hard decision for them. She was silent on that subject. I believe some women are naturally bound and determined to have more kids no matter what. I don't really understand that, as that drive seems to be absent in me and was pretty feeble to begin with. Any trace of it that may have been present before the W bomb has long been annihilated. I admit that the possibility of never being a grandparent really bothers me, but I know there is no guarantee that will happen in any situation. Of course, if you have six kids, your chances are better than mine. Oh yes, these are some of the things my brain is processing at the moment. Big fun.

I am feeling somewhat better, although the red-nosed face in the mirror tells me I won't be allowed to play any reindeer games for some time. I tried not to breathe on anything or anyone today and gave Erik some cold medicine before class so he didn't have the pearlescent twin earthworms coming from his nose contaminating everything. Hurl.

Brian had a nasty accident in the driveway yesterday while he was putting some of his gear back in our boat. His foot apparently slipped, and his rib cage smashed against the boat's edge, breaking at least one rib. When he came in the house, his face was paper white, which scared me to death. He slept upstairs in the guest room last night, as I was sick and he was in agonizing pain. He seemed to be doing fine today, but I can tell he still has a lot of pain and will for some time. He's a tough old guy. He has an old bump on his rib cage from a previous fracture and now has a brand new defect in the contour of his chest. They can put a man on the moon, but there is not much they can do medically for broken ribs. I supported his decision to skip the doctor unless his condition changes or he decides he wants to wear a brace.

I know I had more to say today about life in general, but it escapes me for the time being.


Monday, October 16, 2006

Biohazard Girl

Random Thought of The Day: I refuse to be a passenger in a car in which there is a dream catcher hanging from the rear-view mirror.

Okay, it's official. I now have SARS. There is a bug making its way around town, and almost everybody I know has it. I felt better last week but seem to be going downhill quite quickly once again. I had a very quiet, uneventful weekend. Brian ventured off with his dive gear to go crabbing this weekend off the coast while Erik and I laid low and busied ourselves manufacturing buckets of snot. Great fun. My neighbor came over Friday night with a package of microwave kettle corn and a bottle of champagne, and we enjoyed some of the spicier fare on our satellite dish (Nip/Tuck). She doesn't have cable. That was a lot of fun. Erik and I did get to my folks' house Saturday to watch the Oregon game, and my mother made steak quesadillas to die for. Erik and I made it out of the house to Target yesterday to pick up a few things I needed but played indoors most of the day. I sang "The Itsy-Bitsy Spider" almost without realizing I was doing it (I sing and talk to myself constantly), and when I looked over my shoulder, Erik was trying to do the hand motions for the climbing spider. He really absorbed things at light speed this weekend. For example, when I lit one of my Yankee Candles in the kitchen Saturday morning, he said, "Candle!" Who even knew he was familiar with that word? He said, "WHEAT!" when he saw me eating my strawberry shredded wheat this morning, and when I asked him what he should say, he said, "Peeze" (please). When we were out and about, I bought a couple new kids' CDs for him and a koosh ball that lights up when you squeeze it. He loves it. He continues to greet every stranger we see but seems to be realizing that not everyone is friendly.

It wasn't the best weekend on record, but I did get lots of quality time with Erik without worrying about work. Brian hauled his gear and clothes back into the house this morning, and the rotten fish smell that rolled in with him was indescribable. I dumped a half box of baking soda in with his clothes in the washing machine. I am glad he is back safe and sound without any real jellyfish stings. I am making crab on English muffins for dinner with a big salad. If I feel any lousier, however, dinner might be nice, hot chowder and bread instead.

I finally got a picture to upload on Blogger. This was during Erik's party when the kids went outside. I will continue to try to upload more photos, but this week we plan on looking into other options for connecting to the internet so I can better communicate with my girls and maybe try a photo hosting site for private on line albums to share with you all.

This week I have to run out to pick up tapes at the eye clinics. I need one of the cosmeticians that work at the funeral home to make me over so I look like I have a pulse, but everything else is going well. It's a good day to feel ill. It's cold and rainy. Time to light more candles! Peeze!

Friday, October 13, 2006

Goodbye Kisses

Fran, our family friend, who was really more a family member, passed away very early Tuesday morning.

Fran has been a part of my life for as long as I can remember. Her husband, Paul, who passed away two years ago, played bassoon with my mother in the symphony for years. My parents were very close friends with them and ended up caring for them for the past few years. Paul developed eye problems and then eventually a brain tumor which was discovered after he suddenly developed seizures. Fran developed cancer and was told her time could be short, although she lived much longer than the doctors imagined she would. They never had kids of their own, but they were always part of our family, and I loved them very much.

My last memory of Paul is when I saw his tall but frail form in a hospital bed. I was pregnant with Erik then. Although he looked as handsome as ever, he was hallucinating. What was strange was that he was lucid enough to describe what he saw to us in detail and knew he was dying. He was, as usual, happy to see me and my family. He loved having us talking and laughing around his bed, although he didn't follow the conversation well. It was fascinating and heartbreaking. I remember tentatively reaching out and touching his foot, trying so hard not to cry in front of him, knowing Erik would never meet him. When Paul was cremated, his ashes were placed in an inexpensive container from the mortuary, and he was temporarily stored at my parents' house in the closet in my little brother's old bedroom to wait for Fran before their ashes were scattered together. There is quite obviously so much potential for humor here, but I will keep my jokes on this subject to myself for fear of offending my readers. I can assure you that Paul would have found this situation probably equally amusing. In short, Paul has been a guest at my folks' house now for quite some time, but he will be leaving now, too. I imagine even that will be sad, now that I think about it. He has been a presence there for two years now.

I couldn't bring myself to have yet another last memory of someone I love in their bed dying. I would much rather remember sitting next to Fran in the audience at the symphony listening to her bilious rant about how much she hated the movie The Sound of Music. She made me laugh so hard telling me she would never get that two hours of her life back. She was an unapologetically blunt person, but I discovered that with these particular types of blunt people, although they tell you the truth whether you want to hear it or not, you never have to guess about how they feel about you. That was a good thing in my case. She was so wonderful. She lightened up holidays and family gatherings by loosening us all up with her straight-faced, slightly salty, hilarious stories and jokes and was an absolute joy to be around. My mother's own joke was always, "I wonder what Fran is going to wear tonight?" You see, Fran had a closet full of the exact same outfit: Black pants and white button-down, long-sleeved shirt. No frills. No surprises. Paul was always cuddly with hugs ready for me, no matter how old I got. They were both always obviously happy to see me, even if it had been months since I had seen them last. I remember visiting their house with my parents in recent years and finding myself instantly seated in their comfortable living room with an aquarium-sized glass of champagne over ice, watching their little dogs, Bubba and Squeak, playing close by. It almost felt like an extension of home.

Fran got to meet Erik, and she loved him to pieces. My mother was told by the nurse last weekend that Fran was pretty much "out of it," but when my mother sat at her bedside last Sunday morning before Erik's party, Fran managed to weakly blow the familiar double air kisses we always routinely exchanged and giggled about (MUAH! MUAH!). She actually smiled when she was told it was Erik's birthday and that we would drink champagne in her honor. Hearing this made me break down Sunday, but I was so glad she knew what was happening that day. Bittersweet.

Now that she is gone, there is a gaping hole in my world, like there always is when somebody close to me dies. Even when I know it is coming, there is slap-in-the-face, cold water shock when it happens, and the emotions seem as fresh and new as the first time I ever felt the pain of loss. The emptiness is palpable and so much bigger than I imagined it would be. I'm no good at goodbyes.

Because Paul and Fran wanted to give back to the community, there will be a rehearsal hall for the symphony built in their name at the local college. Hopefully my mother will soon be able to practice her bassoon there. A part of them will always be here in town, and the people who did not know them will see their name on the building. I wish I could tell those people what they missed.

Wednesday, October 11, 2006

Well-Child Check

Erik had his 2-year well-child check today. We both came down with a cold yesterday but seem to be on the mend already. In fact, both of us felt so crummy we skipped group therapy at the last minute yesterday and went instead to the grocery store to purchase cold medicine and Kleenex. Even when he is sick, which isn't often, Erik is still a happy boy.

Erik is doing well with his orthotics in the house and when he is playing, but when I attempt to get him to walk by my side across a waiting room or parking lot, his toes instantly migrate inward, especially the left side, and he walks pigeon-toed. I will to address this with the physical therapist. Maybe she can take him on a drag around the block at school.

Today at the pediatric office, Erik greeted the receptionist by saying "hi" like an adorable but persistent broken record and did the same with every person, real or imagined, after that once we were ushered into the exam room. The appointment went well, although I still detest the routine, age-appropriate list of questions the nurse asks each time about Erik's abilities. Since we are playing a completely different ball game than other kids, this can be a horribly depressing experience and has even given me the blues for a few days afterwards. I am noticing, though, that the list is less and less depressing as Erik ages. In the old days, I answered "no" to 95 or even 100 percent of the questions they asked about what he was able to do and had a good cry in the parking lot. Today I found myself reminded I have a 2-year-old who cannot stack more than two blocks on top of each other (and even that is a stretch), but that was the only answer to a question that stuck with me this time. Once the doctor came in to see us, I asked how often we should be drawing a serum calcium level, and the doctor admitted she needed to look up the protocol for routine tests in WS children. I got the feeling she was not aware of the calcium issue at all or perhaps thought we needed to make sure he had enough calcium, as she mentioned supplementation, which, of course, is the opposite problem that constantly threatens a young WS child. Her response was a bit unsettling, but I appreciated her honesty. There are only two known people in this entire town who have WS, including Erik, and she has never had a patient with WS. I will continue to educate myself and light fires under Erik's providers as his advocate.

Erik's weight is less than I had hoped but still quite respectable at 24 pounds, 12 ounces (10th percentile). He is 34.5 inches tall (50th percentile). He is a tall, lean drink of water. Dr. G. commented on how much better Erik looks in general from six months ago. He received his MMR/chicken pox immunization and resultant Spongebob boo-boo strip without too much trouble, and I took him to Gramma and Boppa's for a well-deserved nap before I went to work.

I am dying to upload photos of Erik's party, but Blogger appears to be on crack this week. In addition, we are in a pocket of Amishness, which means we can't get a pizza delivered from most places or high-speed internet. It's amazing we have electricity or toilet paper (2-ply!). That means in the time it takes to upload one photo of my precious morsel, I can wash the car, do five loads of laundry, thoroughly pick my nose (both sides), bake a pie, and write 12 dirty limericks while I wait. I will keep trying, because we got some really cute ones.

Tuesday, October 10, 2006


I have been freaked for weeks now wondering how Erik would do with my nephews in the house for the weekend. Truthfully, I had second thoughts about the commotion surrounding Erik’s birthday, wondering if a party was going to be enjoyable or a complete nightmare for him. I thought about not having a party at all. I ended up keeping as many kids as I could off the guest list, and there were only four in attendance with approximately 15 adults.

When Brian’s brother and family came to stay with us on Saturday, I was waiting for shutdown mode, tears, and shaking upon the door opening. What happened next was a complete surprise. What we saw instead was a curious, animated little boy so interested in his cousins that noses actually touched. For the very first time, I saw Erik smile to greet another person his size. It was nothing short of a miracle to me. Once I explained to my wonderful nephews (ages and 2 and 4) that Erik has no sense of personal space and was simply saying hello, they instantly understood as only kids do, and there were even miniature hugs exchanged. There was more of the same as the minutes, the hours, and then the whole weekend progressed. There was no shutting down. There were no tears. There was no uncontrollable shaking. Erik demonstrated genuine interest in his cousins and what they were doing. When he was a little anxious, he clung to me or Brian but still wanted to take in what was going on and was easily coaxed to smile. I called my parents that evening and shared the news with them. This was a big first.

Sunday morning Erik woke up continuing to demonstrate the same behavior. Boppa, Gramma, and great-grandma arrived with the cake, a fabulous homemade confection in the shape of a semi truck, including Hershey bar mudflaps, Oreo wheels, filling made from Erik’s favorite frozen three-berry Costco mixture, a Pez license plate, and a tiny, yellow, edible “support our troops” ribbon. When Erik saw his cake, he did a combination spazzy run/dance and was obviously very excited. It went nicely with my flashing shoebox stoplight, red/yellow/green balloons, and glittery traffic control signs. We spent Sunday morning getting ready for the party, and it came together beautifully. Erik handled it all gracefully and enjoyed it all, including playing with the other kids on our ghetto backyard playground equipment. He seemed to enjoy every moment of the party. I laughed when he learned to say "cake," as it sounded exactly like he was doing a George W. Bush impression.

It amazes me that Erik had this complete change of personality within two days of receiving his orthotics, and I can’t deny there is a possible connection here. They seem to have given him a new sense of confidence and make him feel more substantial physically. I took him to the store to shop for Brian’s birthday yesterday, and he said “hi” at the top of his lungs 45 times to everyone he saw while smiling a broad, new smile I have never seen before. He was almost aggressive about being friendly. There is no trace of the slumped-over, drooling boy in the shopping cart I used to know. I take him to group this morning, and am dying to see how he does there after such a miraculous weekend. I think we are going to have our hands full from here on out. I confess that I am more than a little nervous about that, as this was quite literally an overnight change and will require some getting used to. New doors are opening, and I am anxious about what is on the other side in terms of safety and my sanity. I saw the way people looked at him in the store and wanted to punch them as I went into mama bear mode. However, I am very happy Erik is…well, happy. That is the best darn birthday present ever.

We still have presents left to open but are enjoying each gift slowly, one at a time. That seemed to be the most appropriate way to celebrate. After all, that’s how Erik has taught us to live our lives. xoxox

Saturday, October 07, 2006

Happy Birthday, Erik!

Today's is Erik's official birthday, even though we don't celebrate it until tomorrow. Brian's brother Brad, Brad's wife Dawnita, and their sons Brayden and Brogan arrive this afternoon and will stay here this weekend. I will spend today grocery shopping and getting things ready. Brian is going to steal away and play a couple hours of flag football after he is through with his "honeydo" list, too. Tomorrow the rest of both of our families will come to celebrate with us.

As for Erik, he continues to cry when we install his braces, which we have to do two or three times a day. We take them off before he sleeps. I sent an e-mail to his orthotist with the photo of Erik on his excavator thanking him for his support and professional care during this challenging time. He wrote me back and said it is an honor taking part in Erik's care and that he got "misty eyed" when he saw the photo. He explained that orthotics help children gain confidence in how they explore the world, and this opens doors for them. It sounds undeniably cheesy, I suppose, but I can already see it proving true. I believe Erik will eventually grow used to having these devices put on his legs and stop crying. In the meantime, we make complete jackasses of ourselves singing opera and showtunes for his amusement. We all love that boy so much.

Erik ate the soup I made last night with gusto, including the beans, chicken, and tomatoes. He even liked saying "soup." He is not normally a huge fan of my dinners. I worry a bit about the rampant sweet tooth he seems to have inherited. One of his favorite words is "cookie," but we don't even have cookies in the house normally. I call graham crackers "cookies." Maybe I should start calling broccoli "cookies."

Thanks for the birthday wishes and support for Erik, as always. It is hard to believe my little bundle of joy is 2. Looking back on these years, it is amazing how much has changed in all of our lives in 24 months. I look at Erik sometimes and think about how neither of us signed up for this, but at least we have each other. The video of his first birthday features him in his high chair eating a cupcake, shaky and slow (although he ate the entire thing). It almost appears as if he was moving around underwater. At that time, we had no idea what was wrong, but worry was starting to sink in, at least for me. His second birthday comes seven months after the W bomb was dropped, and that knowledge, although upsetting, has allowed us to deal with things appropriately and has eased much of the heavy blanket of the unknown we had on our shoulders back then. I am not a woman who likes to be kept in the dark. There are more balloons this year, deliciously dorky, hand-crafted construction paper decorations, a wonderful cake by Boppa and Gramma, and simply more HAPPY in Erik's birthday. I'll post a full report of the party next week.
The following is a song I used for a computer slideshow I did of the first few days Erik was in this world. It makes me cry every single time and only seems more appropriate this year knowing what I know about my son. Happy birthday, Skooby. I love you.
“In Your Time”
by Bob Seger for his son Cole

In your time
The innocence will fall away
In your time
The mission bells will toll
All along
The corridors and river beds
There’ll be sign
In your time

Towering waves
Will crash across your southern capes
Massive storms
Will reach your eastern shores
Fields of green
Will tumble through your summer days
By design
In your time

Feel the wind
And set yourself the bolder course
Keep your heart
As open as a shrine
You’ll sail the perfect line

And after all
The dead ends and the lessons learned
After all
The stars have turned to stone
There’ll be peace
Across the great unbroken void
All benign
In your time

You’ll be fine
In your time

Thursday, October 05, 2006


As promised, here is my report of how things went at the orthotist...

Last night I took a sleep aid but still had horrible nightmares about hardware and Erik's legs. I was furious at the poor orthotist when I awoke for reasons that I could not recall. These days when I sleep, every muscle in my body is tense, and when I wake up, I am already tired and sore. I threw Erik in the bathtub and got some breakfast in him before heading off to the fancy-schmancy orthopedic center in town. When I tried to walk him across the parking lot to the front door, he was up on his toes like Baryshnikov and fell flat on his pint-sized bottom. One of the problems with my little toe-walker is that he is getting heavier and heavier, and it is necessary to carry him most of the time when he is distracted because he falls every few steps. I ended up hauling him across the parking lot, into the building, and into the elevator. Once we came out of the elevator, it appeared he remembered where we were. We were the first patients of the day, and the orthotist himself greeted us in the waiting room and ushered us into the room where Erik was casted a couple weeks ago. On the table was a clear plastic bag containing two plastic braces that looked a lot like Erik's tiny gams. I sat Erik on my lap and removed his shoes. When the orthotist came close to us with the braces and ripped apart the Velcro, Erik's bottom lip stuck out, and tears started to squirt from his scrunched-up eyes. The orthotist said he could take just about any kid crying without a second thought but hated making my son cry. In fact, he hated it so much that he didn't place the braces on Erik's leg for the trip home and decided to leave that to the therapists. He admitted he had been on the Internet for two hours after we were there last time researching Williams. Erik, in the midst of his crying, decided the orthotist's nearly bald head looked interesting and ran his freakishly huge baby hands all over it. I laughed and muttered, "Awwwwkward..." The orthotist said, "Hey, anything to stop him from crying." He explained to me what shoes I would need (cheap, flimsy, low, and preferably closed with Velcro) and that I could rip the insole out of them to give him more room. Erik and I next went to Shopko to locate some shoes. I brought the braces in with me and practiced cramming them into various toddler shoes. Truthfully, they wouldn't come close to fitting in most, and I started to get frustrated. Uh oh. I selected two pair that might work and headed home to get as much work done as I could before Bev came for Erik's home visit. When she arrived, we sat Erik on the couch and distracted him while we put his braces on. He cried a few tears but seemed to tolerate it eventually. I had a pile of shoes next to me from my shopping trip and Erik's closet to try. None of them worked except for one of the pairs I had purchased today. They didn't come close to fastening, though, so they have to flop open. His reaction to moving around in the braces and new shoes was the complete opposite of what I expected. He seemed to almost like them! He stomped around in them like a tiny Frankenstein. The orthotist said nobody would be able to notice the braces with long pants, but it was pretty apparent to me. The dorky shoes left open and stomping gait are kind of a dead giveaway. Bev said that most parents have a lot of trouble finding shoes to fit over the braces. I think I'll quit my job and start making attractive shoes for kids in braces!

My day ended peacefully with me kicking my feet up at my folks' house. Erik entertained us and made us laugh until we hurt. When we got home and took the braces off, there was minimal redness, which faded immediately. The photo I took this evening showcases Erik atop an awesome birthday present from Baby Tatum, sister Emma, and mom and dad Lisa and Chris. Tatum underwent a heart catheterization this week but is out of surgery and is doing well (see link in "related blogs"). Every single one of these families is truly family to me. As tough as life has been lately, I know I am not alone.

Erik's birthday is Saturday, but because of football, we are celebrating it Sunday with family. I'm sure there will be more photos in the following week. Erik is also going to be a bee (non-Africanized) for Halloween, so I'll share that with you, too.

Tuesday, October 03, 2006


I had no idea anyone would notice if I stopped writing for a few days. Was I ever wrong! I have been afflicted with an aggressive case of writer's block and have not had the luxury of time to write, anyway. I am making time after a number of e-mails and phone calls checking on my welfare to post an update. I love each and every one of you!

Erik and I survived another group therapy session today. Being a complete masochist, I decided to give the parent group another go. As I made my way down the hall, I looked through the window into the evaluation room, the deceptively cheerful place where months ago Erik was labeled with a then very mysterious "severe developmental delay." There was a smiling couple watching their child play with an evaluator, and my heart ached a little bit for them. I wondered if they were as clueless as I was that day. I moved on and made myself at home in the parent room by flipping on the lights and staking my claim on the comfortable rocking chair and ottoman this time, choosing a glossy Reader's Digest over the behavioral handbooks and medical texts in the shelves but not absorbing any of the words. I was soon joined by the only man that attended last week, and we struck up a very superficial conversation about our work schedules, getting to know each other a little better. The mother I used as an excuse to attend last week came into the room, and I automatically vacated my chair for her, as she looks like she is going to deliver her baby any second. This gesture seemed to be the perfect ice breaker, and she struck up a very pleasant conversation with me. By the time group started, there were five parents in the room. The discussion leader, whom I was less than fond of last week, slowly but surely grew on me. Her personality is on the no-nonsense, blunt side, and once I got a feel for her, I felt comfortable opening up, which was not what I was expecting to do. There was no set topic, and we just talked for an hour and a half about our kids. The verbose woman with a brace on her ankle from last week very carefully and gracefully asked what was wrong with Erik, and I gave a quick lecture on Williams syndrome and all that has happened to our family to the group. The other parents suggested earmuffs or headphones to help with his problems with noise, and I couldn't help but think of poor Warren from the movie Something About Mary who screamed every time somebody tried to touch his ears under a set of furry earmuffs. This thought, as inappropriate as it might be to others, made me smile. I keep about 95% of my thoughts to myself for this reason. I spoke a great deal with this talkative woman next to me and learned she has cerebral palsy. I found her very easy to talk to. Her daughter is probably 2 years old and has hypophosphatemic rickets (XHL). This little girl is very tiny but can speak quite eloquently in an adorable, seemingly helium-filled voice. Despite this child's miniature stature and soft words, Erik seems to think she is the devil incarnate and acts as if he is terrified of her. In our parent group today, I once again found validation for my feelings and fears, which felt very good. Admittedly, I have a long, long way to go as far as accepting what has happened to my little boy and how it will affect him for his lifetime. Maybe I never will, but it is nice to feel accepted and understood by others who have gone through devastating heartbreak just like I have, although the disorders and syndromes may have different names and outcomes.

When it was time to go up to the classroom to see our kids, I found Erik sitting at the little table eating cereal in milk in front of a mirror, smiling and making faces at himself. I almost fell the frick over. Erik never eats at school, and he certainly never likes milk on his cereal at home. He saw me in the mirror but couldn't figure out where I was. When I went around to the other side of the table where he could see me, he gave me a giant, uninhibited smile. I really enjoy seeing the therapists interact with him, as they obviously enjoy working with him. After his hand was stamped and the goodbye song was sung, on the way out of the building, he told the lady at the front desk, "BYE!" I think we are making progress.

On the drive home, I felt unexpectedly raw and edgy. Heaven help the first person who pulled out in front of me in traffic or looked at me sideways. Even though the meeting went well, this facility is an extremely difficult place for me to be, and I imagine it always will be. No matter how positively I try to think, I am there because there is something wrong with the wonderful child in the back seat of my car repeatedly telling me to turn on all of the dome lights, and it hurts like hell. I felt like I had just left a really intense, heavy movie at the theatre. Since 10:30 a.m. is not a socially acceptable time to have a glass of wine (although when Erik cried for months at a time, I would have debated that issue), I put Erik to bed and did some mindless dusting instead. I took a deep breath and eventually made my way upstairs to my office. As I relaxed and worked, my cell phone rang. Low and behold, it was the orthotics office informing me Erik's leg braces are in. I go in at 8 a.m. Thursday. Will this feeling ever end?

A lot has happened this week emotionally, a lot of it related to a family friend who is dying of cancer. My parents, who are helping take care of her, took Erik to see her today. Although she has probably a matter of hours to days to live and is in and out of consciousness in a largely confused state, I felt myself come very close to tears hearing that she knew who Erik was and was happy to see him. I have a black cloud hanging over my head knowing I will probably never see her again. I will be extremely sad to know she is gone, but there is nothing that can be done now. I am thankful she got to know Erik, because the last time I saw her husband in the hospital before he died, I was still pregnant. That I will always regret.

I am surviving and doing fine, although it has been a tough week. I will probably post again after Thursday's appointment and maybe take some photos of Erik's braces. On a brighter note, Erik's cousins are coming for his birthday this weekend, and I am very excited about that. I can't believe I am going to have a 2-year-old!