Play Date

I am lounging this morning in my bathrobe. Fridays feel like days off to me because Brian picks up Erik at the end of the day, and things aren't so structured or rushed. Usually I have to get things done before 5 o'clock. Many times I find myself with a cocktail in my hand at the neighbors late Friday afternoon, and I finish work up Saturday morning in my PJs while the boys sleep. I decided not to get on the treadmill today, either. Erik will probably sleep in this morning, as he had a rough time going down last night. Yesterday Kathy brought Dominick over to visit. We sat on the floor of Erik's room and watched the boys play. Erik tentatively reached out just to touch Dominick a couple times. It was so sweet that it made my teeth hurt. They are slowly transitioning from parallel play into playing with each other, and it is amazing to watch them change. Dominick graciously shared toys with Erik (Kathy and I probably say, "Awwww, that's nice" in our sleep now), and he was sad when he had to go home. We girls discussed crucial world issues like the recent Britney Spears interview (insert sound of train wreck here) and genuinely enjoyed each other's company. The big news, of course, is that Dominick will be an older brother by the beginning of next year. I am excited about having another friend for Erik to love. I enjoyed having them over, and it made a gloomy, rainy day much brighter. In other news, last night Brian and I decided Erik is going to need a "big boy" bed soon. Sometimes it sounds like Erik is using power tools in his room because he is kicking his crib so hard and makes it creak and groan. He is one small step away from launching himself out of it and landing on his head like he is in a baby mosh pit. I went on line last night and purchased some bedding at Target with little trucks all over it. I love the soft green color (kiwi smoothie) we painted Erik's room, but I had to incorporate that color in with something manly now that he is getting older. That was not easy. I was thinking we were either going to have to move or paint (I voted for moving). My little brother's old twin bed will eventually make its way over here for Erik to use and free up space for my folks at their house. There is a trundle bed that goes with it in the valley at my grandmother's that we will eventually take home for Erik's cousins or friends to use. I also bought a rail to put along the bed to help make this transition easier and safer. I am already having some anxiety about all of this. I am gently but firmly pushing Erik toward the goals we have set for him through early intervention, yet I miss having my tiny, fragile baby already as he gets stronger and succeeds in meeting his milestones. It makes my heart ache, and yet I couldn't be happier he is growing, healthy, and very happy. It seems that once he decides to do something new, he does it with gusto, and there is no turning back. It is all going so fast now!

Lil Beaver Believer

Oregon State won the College World Series! I didn't see the end of the game, as I was attending my book club at Barnes and Noble last night (imagine that -- no television anywhere in a bookstore). Thanks to my folks for making Erik's shirt. He was wearing it when I picked him up after work today. Too cute! It was blazing hot again today, and Brian and I decided it wasn't worth being our usual tightwad, crotchety selves in the air conditioning department, especially since I was working upstairs. Yesterday we didn't turn it on and were very sorry, as it was like a hot kiln in here all night. Gracie kitty even mournfully meowed all night. Our house is surrounded only by grass, and the fairly young trees we do have are much too little to provide much shelter from the elements. We lost one tree to some sort of desert rat in the back yard (our only tree back there). One day it just fell over, the root system having been completely devoured. Last night Erik didn't fall asleep until 11:30 and was miserable because he was so hot. He went down well this evening. I am on my way to sit out on the porch before bed to see if there are lightning strikes around us sparking any fires in the distance. If I feel especially nerdy, I will listen to my police/fire scanner. All three of us spent some time out in the shade this evening washing Erik's rocks in my beloved blue cleaning bucket, which was wonderful because it was breezy and cooler outside. Erik actually DANCED for me when I opened the video camera. He did the squinty/toothy face, too. I couldn't believe it! I can't wait until the therapists see how much he has blossomed during the summer break. He has therapy again in two weeks. Good night and GO BEAVERS!

Ham And Cheese

I dusted off the video camera last night to capture Erik's walking abilities. You might remember my prior frustrations with Erik coming directly toward the camera and ascending me like a monkey climbing a tree, thereby making photography next to impossible. As he grows, his reactions to things change daily. This would be one surprising example. Oh sure, he climbed me anyway but put on quite a little show for me before that happened. This is a far cry from the little boy who sits slack-jawed and drooling at school.

Working Wonders

Brian and I decided we need to get out and do more now that Erik is (a) eating more normal food and (b) is not crying like he did. It is much easier to go places and do things now. For months we were pretty much stuck in our own home, and we are accustomed to being homebodies. It wasn't a bad thing, but we are ready to get out into the world again. Erik is generally up for anything now. There is a children's museum in the new, trendy part of town (which I normally avoid like the plague) called Working Wonders, and we have wanted to try it out for some time. It was promising to be a very hot day, so we set off early just as Erik was wanting his 3-hour nap, hoping the distraction would make him forget he was losing consciousness and wanted to be in his bed. I strapped him in the car with his book about wheels, and he was happy as could be. When we arrived, there was hardly a car in sight, and I was afraid the museum wasn't open. We were quite pleased to find we were their first customers of the day. The interior of the museum is arranged like a tiny town with storefronts and even a park in the middle with a big trunk of costumes, a stage for kids to perform on, and park benches for the parents. We first went inside the grocery store, complete with miniature shopping carts and faux food on the shelves. Any child is free to don an apron and get behind the checkout counter to man the cash register or just shop around. There was a big tub of rice with scoops and such, and Erik played with that for some time. He doesn't really know how to scoop up things and dump them out yet but filled cups with rice using his hand, which I thought was rather impressive. He even pushed a shopping cart for a short distance before suddenly dropping to put his ear on the ground to watch the wheels on the cart turn. Just outside the store was a construction zone, and Erik was quite thrilled with the magnetic gears on the wall that could be arranged and turned. There were giant Lincoln logs and foam blocks to stack and a little home under construction with paintbrushes, pretend paint, and plumbing and wiring that could be installed. There was a post office with letters that needed to be delivered. There was a travel section with a little Japanese home you could visit, complete with a futon, dishes, and little Japanese shoes to take off at the door. There was a pizza parlor with "ovens," a pizza making station, and fabric pizza fixings. There was a corner featuring the great outdoors and fitness with climbing wall, tent, kayak, and large and small stationary bikes (Erik didn't reach the pedals but looked ADORABLE). There was a corner for toddlers with a tub full of plastic balls in it, and Erik settled down into that like a woman of leisure taking a bubble bath, relaxed and happy in front of a mirror so he could gaze at himself, sinking lower and lower until I thought he would fall asleep, much to the obvious disgust of another toddler who was told by his mother to wait for Erik to finish playing on this exhibit. There was a veterinary office, complete with x-ray machines and scales. There were even stuffed animals in a pen waiting to be examined. There was an art studio where Erik once again demonstrated he could make marks on paper with crayons, even though he still doesn't see the point and lost interest immediately. There was a tub full of dirt and worms. There were a lot of neat things for kids to do and play with, and by the time we had seen a lot of it, there were a handful of families touring around. As Erik went up to the third stranger at the end and wanted to be held, I finally started to feel myself slipping a bit emotionally. I admit the fact he will approach anyone and put his arms up to be held is extremely frightening to me and makes me very uncomfortable. He has only been walking a matter of 3 months, which has opened up a new world for all of us, and I am still adjusting to it. I can see it is going to take some time for me. I remember the first time he did this at Barnes and Noble one day, when he crawled up into a woman's lap. It is interesting to see how adults react to a small child hanging onto them as if he has known them for years or is part of their family. All seem to be a little surprised, most of them very pleased, and some visibly slightly annoyed when they realize he is hanging on them or staring at them without any intention of stopping. I do know that I don't like other people touching my child, but most are only being polite and think he is very cute. Most people laugh when he is so unusually affectionate and make a big fuss over him. It is hard being a person like me who likes to be very polite but keep to myself, as I am now finding it necessary to interact more with people I don't know and fighting the urge to take him from them too quickly. This interaction is not necessarily a bad thing, as most people are wonderful, but it is still very hard for me. I think it will get easier with time. I asked Brian today if people can tell something isn't right about Erik when they ask how old he is. We are not really sure. In the end, I suppose it shouldn't matter to me, but I ask because I am very curious at how the world sees my kid. As he grows, there are definitely differences becoming more apparent. After driving home, we put him in his crib after an exceptionally messy PB&J sandwich, and I passed out on the couch in front of my crime shows for a much-needed nap. Oregon State is still in the College World Series, and Erik and Brian are now watching the game. I can hear happy hollering from downstairs, so it must be going well. Erik is finally feeling like himself again and has been cracking me up all day. What a character! His repertoire of funny faces is unrivaled by any toddler I know. I know his birthday is 3 months away, but this morning I placed a bid on a long loaf cake pan on eBay and am planning his party already. I am doing a truck theme and will be attempting a fire truck birthday cake I saw in a magazine. I am thinking red frosting might be the most hideous, unnatural thing I have ever concocted in my kitchen, but I'll do anything for my Skooby and his great love of the wheel. It's either that or a dump truck. I haven't decided. What this all boils down to is that I find it crucial for to me to have something to look forward to, no matter how small. That's the report from the Big House this lazy Sunday. I think my hair is turning into a frizzball from sitting next to this swamp cooler, so it's time to fire up the barbecue, get dinner going, and close for now.

To Erik

You are
a familiar, intriguing mystery,
the delicate contours of your face
a sweet, dark puzzle that revealed
volumes to me before anyone else could.

You are
a bouquet of lovely surprises --
bright petals to tease neon girl-giggles
out of this pathetic, aging darkness that is me
on days it rains and I am lost.

You are
solid as stone in these arms,
remaining when others
slipped away to leave remains
and wait in a distant place for me.

You are
a gorgeous distraction,
causing emotions under guard to fall,
scatter, and bounce at my feet --
silly, colorful scraps of me for all to see

You are
dreams of wispy, baby-scented blondness
and pure blush brushstrokes on ivory skin,
warmth like dancing sunbeams,
vibrant and alive against my cheek.

Like clockwork comes my daily dare
to open these eyes with the hope of discovering
another miracle of morning before me
containing the glittering treasure of proof
you are not a dream at all but that

You are.

Sophie's Run 2006

Some very important events occurred before this blog was "born," and they didn't get included in my ramblings but should have. One of the most important events of the year was Sophie's Run, a 5K walk/run in Corvallis, Oregon on April 29, 2006. Sophie is an adorable 4-year-old girl who happens to have Williams syndrome. This was the race's second year. Heather is Sophie's wonderful, energy-infused mom. Heather's friend Amy originally put the race together as a way to help secure Sophie's future, as the future needs of our small kids with WS in the future are largely unknown at this point. Although this is a great reason in itself to have this event, I think it has and will morph into something even more gigantic than that for families like ours as time goes on. They are raising awareness of Williams syndrome, something most people have not heard of, and bringing families who feel alone together for something fun. Since there are roughly 1 in 20,000 kids born with WS, we tend to be scattered all over the country by this statistic. I have new friends from the states of New Mexico, Indiana, New York, and New Hampshire, just to name a few. I felt quite isolated at first but now have a network of support across the United States. The Williams Syndrome Association holds a convention every two years to bring all of us together periodically. Brian and I are not nearly ready to attend this year's convention in Viriginia but will consider it next time. Since our kids have so many similar physical characteristics and our own concerns and emotions run along such a similar plane as the other families, it is hard not to feel like a giant family. I met Heather on the internet through the Williams Syndrome Association message board when I was trying to find Williams families in Oregon. I felt like I was on another planet, as there was nobody in town with a small child like mine. Heather graciously invited us to attend the race. Brian and I happened to be at a crucial point in our grieving at that time, and I wasn't sure if we would participate; but we both ended up open to the idea. We got a motel night before in Corvallis. Brian found a wonderful room overlooking the Willamette River for our stay. Our fifth wedding anniversary was on the 28th, and we made this trip part of our celebration, complete with favorite binky, plastic wine glasses, and champagne. The Holiday Inn in Corvallis has a fresh-baked cookie bar before bedtime, which was a definite plus for all three of us. Erik had never spent the night in a motel, and we had not slept in the same room with him since we brought him home from the hospital. However, we slept quite well after we all got used to the idea. The next day we got into our comfy gear (Erik brought his Oregon State sweats) and headed for the park. What really made the day special were the family members and friends that made the trip to join us for the race. My mother, father, grandmother, aunt, and uncle were there from my family. My very dear friend Shaena was also in attendance with her husband Andy, their infant daughter Samantha, and even Andy's mother, Judy. We couldn't believe Andy and Shaena made the trip with their tiny baby, a situation most of us would avoid at all costs, and even participated in the race itself with us! Over 230 people came to participate. When we arrived, our race packets had been taken care of for us and we had a parking space waiting. Talk about feeling like VIPs! A wave of emotion hit us as we got out of the car and felt the energy in the park. For the first time, I felt like we were not alone. Words fail me here. I finally had the opportunity to meet kids with Williams for the very first time, which was wonderful and a little scary for me. I am still not ready to meet older kids and adults with Williams but was willing to try meeting the little ones. Sophie and Maddie from Portland were both there to greet us, and their families were wonderful. We swapped war stories, laughed, and cried. Once the race began, I was lovingly stroller-jacked by Erik's very proud grandparents, and I bragged to everybody around me how FAST my kid is (my parents are in excellent shape). Andy, Brian, Shaena, Samantha, and I stuck together for most of the journey. Even very hungry baby Samantha was patient with the length of time it takes four gabbing adults to complete a 5K race at a snail's pace. At the finish line, there was a small ceremony to hand out prizes, announce times, and get the kids together in one place. Since it was Sophie's birthday, we all sang to her. The most incredible thing then happened. When I stooped down to the kids' level, Maddie's arms suddenly encircled my neck, and she gave me the sweetest hug I have ever received. I am not a very religious woman, but I try to keep myself open to spiritual experiences; and this probably qualifies for number one on the charts for me. I can't do it justice with words, but I will try. At that moment, everything fell completely silent. All of the happy commotion around me seemed to cease, the world around me blurred, and I could hear nothing but my quickening heartbeat. I first thought I was passing out! I soon realized something special was happening. This child's soft, dark hair was warm from the sun in my face and her little arms tight around me, and it was a wonderful surprise. I felt a sense of peace envelop me in the midst of these three very loving, eerily angelic kids who think nothing of hugging a stranger, as it is completely natural to them and they lack the usual preprogrammed fear of others. I felt the presence of something more pure than I have ever had the honor of knowing before. What seemed like seconds was probably only a millisecond. After I recovered from that little moment and the ceremony was over, all three of our families drove to Papa's Pizza for Sophie's birthday celebration and fellowship. Erik shoved a chocolate frosted cupcake down his gullet in seconds flat and enjoyed the party immensely. When it was all over and we were going our separate ways, I realized that even though I shed more than a few tears throughout the day, there were people around me who didn't think any less of me for it, put their arms around me anyway, and made something that could have been dominated by undertones of despair and grief into something so incredibly fun. Who knew? Heather e-mailed me this morning, and my memory was jogged to the point that I had to write about it today. Thanks to the families who welcomed us with open arms, and thank you to my friends and family who came to support us. Next year will be even easier to enjoy. I know there were many more of you with us in spirit, and I hope you can join us next year. Two words: Beer and pizza! Oh yeah -- We didn't come in last. We beat the little girl on the tricycle.

Half Staff

My thoughts are with the family of Army Pfc. Thomas Lowell Tucker, 25, of Madras, Oregon today.

Keep On Truckin'

You have to love Costco. Brian had his eye on this Tonka truck for a while and decided to purchase it during our weekend outing. That made me smile. Erik was excited the moment we placed it in the cart. In general, we have been encouraging Erik to play with things that do not spin, and he has learned to stack rings, throw balls, push buttons, and put his nesting blocks inside each other. I can't adequately explain how huge these accomplishments are. He has only been walking for less than four months! However, since his genetic programming has given him a strong obsession with the wheel, we enjoy indulging his natural love of it now and then. Erik's narrow, bunless backside fits nicely in the bed of this dump truck, and today Brian pushed him up the driveway and let him gently roll back down. I placed a bucket of water and a rubber duckie on the front walk, not knowing if Erik would play with them or not, and he washed rocks for us and placed him back into the landscaping. I now see geology in this kid's future. Or obsessive-compulsive disorder. Oh dear. Speaking of deer, all day long there was a fuzzy fawn hidden in the grass of our back field, and I was very worried that she had been orphaned by the fast moving cars to the south. Brian tried to get me to look, but I didn't want to get emotionally attached to another dying animal around here and avoided her all day. Now dusk is here, and a healthy-looking doe has come to claim her baby. The tiny fawn is nursing happily outside our back door in the cool grass in front of a gorgeous backdrop of setting sun and mountains underneath a purple and pink-streaked sky. I suppose they are on the way to the canal for a drink. It's a nice end to a very relaxing weekend.

Happy Father's Day

Dear Brian,

I know that being a father has not been easy so far. I know you have suffered with me in your silent way. Looking back, it is shocking but painfully clear that we have had more heartache than happiness at this point, as blessed as we are that Erik survived and enriches our lives every day. I imagine the hurt will bring us more appreciation of what will go right in the long run and that we will be happy again soon. In honor of Father’s Day, I thought about the happy times we shared during our rocky initiation into parenthood and the reasons you are a great father for Erik. Here are just some of them:

* How you too quickly humored my hormone-soaked suggestion of referring to old Louis L'Amour novels for baby names even though it was CRAZY (Jubal Sackett, for God’s sake?). I knew I made a mistake when you sprinted for the bookshelf. Brian, it was and still is a CRAZY idea. Really. But thanks for humoring me.

* All of the unplanned, inconvenient trips to the store for $25/can specialized formula, medicine, and highly embarrassing health care products, not to mention the hundreds of gallons of ice cream and the many pizzas you volunteered to buy as needed, regardless of what hour it was, for Erik in utero.

* The tiny cot you slept on for 3 days at the hospital without one complaint.

* The football games you missed the season Erik was born and thereafter.

* How you got up for me countless times to feed Erik so I could sleep.

* The timeless songs you sing in your deep voice to Erik when he is crying, like “The Ants Go Marching,” even though you don’t take requests, sometimes resort to songs from Oliver!, or make up the words when your memory fails you.

* The songs you sing that don’t exist, like “Happy Food!”

* The little voice you have given Erik so I can listen to you talking to each other in the other room about fast women, pop culture, world issues, and “Dad, this isn’t the way mom does it.”

* The hilarious expression on your face and the sounds you make when you change a stinky diaper.

* The way you take over for me when I am too tired to go on.

* The fact that you will gladly dress our son when asked, even if your selection of attire is based on how "funny" it is, not on how appropriate it is for occasion or weather.

* How your ear is trained as well as mine to hear tiny cries in the middle of the night.

* The “boy sounds” you make for Erik so much better than I ever could (explosions, flatulence, engines, sirens, etc.).

* How you will hold Erik down in the lab and comfort him with songs when they draw his blood so I don’t have to do it and cry, even though it hurts you just as much.

* The fact that you no longer jump out of perfectly good planes for fun and now drive closer to the speed limit, at least with us in the car.

* The fact that you love Erik more than life itself. It shows in the way you care for him.

I don’t know if I have ever really thanked you properly for all that you have done and continue to do for us. My wish is that we will discover great happiness in the future and be surprised at the profound joy that comes with parenthood.

Happy Father’s Day.

Love, Nancy

Victory

The trouble with using experience as a guide is that the final exam often comes first and then the lesson. -- Unknown

I wasn't going to write today, but I received such an overwhelming response after writing my last entry I thought I had better send up a flare to let everybody know I survived. Thank you for your thoughts, prayers, e-mails, and comments. I felt like I was going into battle and ended up feeling relatively prepared because of you. It also felt great to get my feelings out here, and hopefully it will bring a better understanding of the good, the bad, and the ugly side of what comes with this heartwrenching experience. I promise you honesty here on these pages. As it turns out, I was surprised at how easy it was to talk to my doctor about what was on my mind once I got some momentum going. Not only did she listen to every word I had to say, she actually apologized on behalf of the medical community as a whole not diagnosing us sooner or treating us better, wholeheartedly supported any decision we made without judgment, validated the concerns I had with undeniable medical data, and shared her own personal story of severe genetic problems in her family. Most importantly, she reminded me that my instincts have always been dead on and that I should continue letting them guide me in the future. That was a welcome surprise. Because she is a very strong, matter-of-fact person and I know a little about medicine, we had a conversation about this situation without too much of the sloppy emotion I was worried about. However, I did shed a few tears and let her know I was still in a lot of pain. In turn, she seemed amazed at how well I was doing for such a fresh wound and made it perfectly clear that my feelings were valid. I told her the truth - that this first visit was very difficult for me, and she not only understood but told me about other women that dread coming to her office, some of whom who could never have children and still feel the pain, some of whom who have lost children, and some of whom who have had something go wrong like me. Best of all, she stated that people who pressure me or ask personal questions about childbearing are flat-out rude. I walked out feeling at peace and cried all of the way home - not because I was sad, but because I felt free. I finally felt like I had permission to do what I felt was right for me and feel what I want to feel without apologizing for it or trying not to inconvenience the people around me with my pain. I may fantasize about going all Jerry Springer on someone and punching the first person who says something hurtful or thoughtless to me next, but I won't apologize for those feelings; and maybe it won't get to me so much eventually.

Moccasins

I am scheduled to see my OB/GYN this afternoon for a routine check. To tell you the truth, I have so many emotions swirling in me today about going back inside that building. I have dark memories of sitting in the waiting room, trying to hold myself together in the midst of all of the happy, bulging-with-babies women after seeing my very first little peanut-baby on an ultrasound screen with no beating heart. I have more dark memories of yet another life slipping away after that. I have bittersweet memories of waiting for the doctor in a quiet exam room bawling and laughing at the same time while Brian amused himself with the odd-looking equipment lying about the room. I have sharp memories of great physical and emotional pain. I have wonderful memories of sitting with Brian in that building throughout my pregnancy with Erik -- hearing Erik's heartbeat for the first time, my belly growing ever so round, and being anxiously happy about the impending birth of our child. I have lonely memories of sitting in the waiting room after Erik was born without my husband and son, missing their presence and realizing I missed having a little person with me constantly so much (I talked to Erik all of the time before he was born). I have fuzzy memories of being so bloody tired, not knowing how to ask my doctor if what we were going through was normal, pretending things were fine, and leaving the office feeling alone with unasked questions heavy inside me. Today I must see my doctor for the first time since the diagnosis. She will ask about Erik, and I have to decide what I am going to say. I could say nothing about Erik's diagnosis, but I think that this is affecting my health and what happens in the future to a great degree, so I probably should. If I start crying, will I be able to stop? The only anger I really have is at the people around me who haven't walked a mile in my moccasins, wonder why I'm not happily pregnant at this very moment, and don't hesitate to ask me why (whether they know me and my history or not). Here's their answer. I suppose you wouldn't know unless you were me. And I AM angry, although I will try to let this go as soon as I figure out how and enough time has passed. I have had women wave baby pictures in my face after a miscarriage and tease me about not having kids. I have had people tell me how terrible it is to only have one child. What were they thinking? If they don't know me, they are making giant assumptions. Are they ever satisfied? I suppose they do not realize what it is like to have all of the joy sucked out of thinking about being pregnant, becoming pregnant, staying pregnant, and having a baby. I'm fresh out of joy, and I'm tired of needles, tests, exams, ultrasounds, nightmares, blood, and pain. I suppose they have never felt the nauseating jealously I feel when I look at other parents without a care in the world. I suppose they have never wondered how they would handle being a high-risk pregnancy after age 35 with one special needs child already. I suppose they have never had everybody say their baby would be just fine when he wasn't. I suppose they have never had the joy sucked out of even watching their friends have babies. I suppose they have never felt this kind of fear you cannot just "pray away." Yes, I'm scared shitless, but I need to deal with this my own way, and this means I need to find joy in taking care of our son the best way I know how and to heal in my own time. Being Erik's mom is what brings me peace and joy at the moment, not living up to everybody else's expectations. That is a sure-fire recipe for disaster. I know this is hard to read, but it is a great part of how I feel 93 days after a doctor matter-of-factly told us our baby was going to be mentally retarded and sent us on our way. It is how I feel when I am forced to go back to the place that makes me feel like throwing up in the parking lot. There is some good that has come out of this. I have learned to try on other people's moccasins. Now if only I could learn to cry in front of my doctor.

Skills

Here are Erik and Brian relaxing yesterday afternoon. I have been trying to teach Erik to stick his tongue out for weeks! Perhaps it is a skill best taught by a father. Color me impressed.

Ad Nauseam Part Deux

After being sick all day Saturday, Erik slept for over 14 hours, well into Sunday morning. We finally woke him up, and we all went out to Denny's for a late breakfast. The waitress gave him crayons, and he finally tilted one just right down to the paper and tried to work it back and forth for the first time. He is still too gentle to do things like this, but he is beginning to understand what to do. He wasn't interested in eating the Kix cereal I brought with me but humored me and ate his applesauce and took the Prilosec for his reflux. In the afternoon, Brian went to a wedding, and Erik and I stayed home. By about 5 p.m. after Brian had returned, he went directly to bed and said he didn't want dinner. Bad sign. When it was time for me to retire, Brian was in full-blown gastrointestinal revolt, and I set up my sleeping bag in the living room. I awoke around 10 p.m. and realized I was another victim. I ended up back in the bedroom with Brian, and Gracie kitty took refuge in my sleeping bag. I have never been sick with my husband at the same time. It was so pathetic that we kept looking at each other and giggling because we were so miserable. Erik, of course, was better. He came up to me at one point, put his hand on my leg, smiled a very cute, million dollar smile at me, and tilted his head sideways. I laughed so hard. I'm not sure what he was trying to tell me, but he didn't seem to mind his groaning, motionless parents draped over the living room furniture all day. We marveled at how when Erik was sick, he was still smiling. How do kids do that? We did get up to watch a giant thunderstorm hit this side of town in the afternoon. I thought the noise would frighten Erik because golf ball-sized hail started pounding our unprotected house out here on the desert. We actually got out of the living room for fear of the windows breaking and raining down on us and went to the front of the house, where we all could watch. Erik did fine with a kung fu grip on my bathrobe for reassurance and was very interested in the bouncing ice balls hitting the lawn. That was the excitement for the day. We all went to bed early, and today looks promising, although I am the only one up at this point. I am thinking about coffee and I am 5 pounds lighter than I was 2 days ago. Not a bad start.

Ad Nauseam

I knew I shouldn't have said anything about Erik's immune system. A horribly contagious stomach bug has been passed from one home to another lately, and it has hit the Big House. Patient zero apparently attended a birthday party in town, and many adults and kids fell ill thereafter. It was even reported that one adult crashed his new Lexus after experiencing intense abdominal pain, a sequela of this particular illness, after attending this party. No, really. I'm not making this up. Anyway, lying in bed on this wonderfully lazy Saturday morning, I heard a sound best described as a cross between a clogged garbage disposal and an intoxicated yelp of surprise. Long story short -- I started off my day in the back yard hosing half-digested chunks off crib sheets and mopping the same rancid material off the floor, thinking of my poor parents doing this 35 years ago for me and then my brother. Paybacks are H-E-double hockey sticks. So far, Brian and I feel fine. Erik will be well in a matter of hours, if history is any indication of how he will do, and I will spend the morning autoclaving flatware and distributing a fine mist of Lysol throughout the house in the meantime. I do enjoy Erik's cuddles when he is not feeling well. Is that wrong?

Blessed

A couple things before I go into my crazy manifesto. This is a photo of Erik and his beloved river rocks yesterday morning. He picks up rocks, smiles at them, turns them seemingly very thoughtfully, admiring their contours, and clicks them together before throwing them down and exchanging them for others. He looks so content when he does this, and it is his favorite thing to do these days. Maybe he will go into landscape design. We might have to move to a more arid, desert state, where people like having yards full of rocks.

Here is an article on Williams I heard about on the board this morning. I was warned by another parent when I joined WSA about the board being extreme and depressing. She was right. I don't read it every day anymore or post many messages but get things here and there from it.

http://www.empathogens.com/Williams-syndrome/Williams-beuren.pdf


I had so many things going on in my head yesterday that I can't organize them all or pick one to write about. Yesterday, of course, was Tuesday, which means Erik went to school. He does much better than I do. When we get there, one of the therapists greets him, and we put his things in his "locker" area before getting him set up doing an activity. This time I put a little plastic apron on him and stood him at the table filled with water and toys. Another boy was dumping water out of a cup, but Erik, of course, went for the water wheel, spinning it like a wild man, ignoring the water completely. I stood up, not wanting to become drenched, watched him from the door for a few minutes, and left. Erik doesn't ever seem to notice me leaving. Although it is nice not to have to leave a sobbing child, it makes my heart ache. I have processed a lot of what goes with being Erik's mom, but I am still working on that one. We are just shy of 3 months since the diagnosis, so I am still processing a lot. There is a parent group for us down the hall, but I can't bring myself to attend. I'm afraid of going into a big, ugly cry in front of people I don't want to know, as on days he goes to school this sloshing lake of tears is too close to the surface. I sneak out instead and let my emotions go in the car. I pulled myself together to pick up work from a couple offices at the medical center and hit the grocery store on the way home. When I am depressed, the grocery store is the place for me. If I am not cheered by the waxy, glistening produce in gravity-defying displays, I can find refuge in my other favorite aisles. I now have three favorite aisles: Cleaning products, baby items, and wine. I will save you the reasons why I love these particular sections of the store, but yesterday I was enjoying my own little world, happily sniffing the new kinds of laundry detergent, when I was approached by a man probably in his late 40s. He looked perfectly normal except for the fact it didn't look like he had shaved for a couple days. He startled me by saying, "HELLO! How are you today?" I jumped and felt that awful, terse, fake smile of mine creep across my face as I automatically pushed my cart forward and replied too quickly, "Just fine, thank you. How are you doing?" To my surprise, he enthusiastically said, "Great! I am blessed!" He then passed by and was gone. In the old days, I would have forgotten about this man immediately and gone back to my love affair with Mr. Clean. Those days are gone. My eyes are open, and I can see the people around me now, although my shyness generally keeps me from any sort of effective, comfortable communication with them. I have heard rumors about someone with WS in town who has a job and even drives a car about this man's age. Was this the man? Will our son approach everyone like this as an adult? Will people hurt our son or will they just give him horrible, fake smiles like mine and push their shopping carts away from him? Will he feel blessed? I had to smile to myself in spite of the tangle of questions forming in my brain, because I have been given the gift of seeing what this man sees. I am very blessed indeed.

Sometimes Miracles Hide

Sometimes Miracles Hide

(song by Bruce Carroll)

They were so excited
It was coming to be
Two people so in love
Now soon there would be three

For many years they'd planned it
Now it would soon be true
She was picking out the pink clothes
and he was looking at the blue

The call came unexpected
The doctor had bad news
Some tests came back and things weren't right
He said, "You're gonna have to choose"

"I'll wait a week for your decision"
Then the words cut like a knife
"I'm sure everyone will understand if you want to end its life"

Though they were badly shaken
They had just one choice
They knew God creates no accidents
and they were sure they heard His voice saying

Sometimes miracles hide
God will wrap some blessings in disguise
You may have to wait this lifetime
To see the reasons with your eyes
'Cause sometimes miracles hide

It seemed before they knew it
The appointed day arrived
With eager apprehension
They could barely hold inside

The first time they laid eyes on her
Confirmed the doctor's fears
But they held on to God's promise
'Cause they were sure they both could hear

Sometimes miracles hide

God will wrap some blessings in disguise

You may have to wait this lifetime

To see the reasons with your eyes

'Cause sometimes miracles hide

Though she was not like the other girls
They thought she was the best
And though all the years of struggle
Neither whispered one regret.

On the first day that she started school
And took her first bus ride
They remembered the words that God had spoke
And they both broke down and cried

See to them it just did not matter
Why some things in life take place
They just knew the joy they felt
When they looked into her face
They learned sometimes miracles hide
They said, "God wrapped our blessing in disguise"
We may have to wait this lifetime
To see the reasons with our eyes
But we know sometimes miracles hide.

http://www.amazon.com/gp/product/B000008E1Y/sr=8-1/qid=1149564396/ref=pd_bbs_1/104-8980991-3465516?%5Fencoding=UTF8

Vital Stats

Personality/Vital Stat Profile

Name: Erik Quinn (a.k.a. "Skooby" or "Booga-Booga")

Hair: Blonde

Eyes: Blue (with gorgeous WS starbursts)

Sign: Libra

Age: 20 months

Weight: 23 lbs and change (more ice cream, please)

Height: Unknown but at 50th percentile and gaining

Likes: Anything with wheels, ceiling fans, mom with hot rollers in her hair, ice cream of any sort, Grandma and Grandpa, bedtime binkies, round rocks, rubber ducky, going to Dominick's house to play with trucks, and books about things with wheels.

Dislikes: Gerber broccoli & chicken (hurl), doctors' offices, needles, loud people, taking medicine, going inside after playing outside, noisy household appliances, things with wheels that do not turn, watching Grandma and Grandpa leave in their green car, and any foods with even subtle chunks of anything (unless they are in ice cream).

Recommended Reading: Trucks by Betsy Imershein

Favorite Music: Toddler Tunes CD from church and Sesame Street Platinum (mom's favorite)

Favorite Toys: Trucks, Fisher-Price gumball machine with Roll-a-Round balls, and Cookie Monster.

Least Favorite Toys: Dump truck with 5-million decibel beeps/engine sounds that jerks to a start without warning like "Chucky" from the movie Child's Play, horribly loud barnyard animal sound wheel, and most things without wheels.

Can: Open cabinets and drawers, use a spoon (with help), bring a book when asked, drink from a cup, run and walk on uneven terrain and hills, play the piano (Jerry Lee Lewis-style), throw a ball overhand, take all toilet paper off a roll, turn pages in book when asked, hug people and stuffed animals, say the word "up" without prompting, and much more.

Working On: Using more words spontaneously, pushing buttons with more force (too gentle), bending knees when reaching for something on the ground, drinking from a straw (sippy cup never mastered), gaining weight, and playing with things that do not have wheels or cannot be flipped over and rolled.

Friendship

I was a painfully shy, quiet kid who sat alone under a tree at recess during my first days of grade school and wished the bell would ring so I could retreat inside. I remember generally preferring the company of other adults, like my teachers, because they were easier to figure out than kids I didn't know and were much less scary and unpredictable. One day, a girl approached my playground hiding spot and was brave enough to say hello. From that moment on, this Kathy-girl and I were attached at the hip. As the months and years progressed, we began answering to each other's names, and our families and homes became one to us. We vowed early on that we would marry men that would be friends, live next door to each other, and have weekend barbecues. One more grade school, one Barbie townhouse, one junior high school, one high school, one college, two weddings, one very scary trip to Tijuana, 5013 hilarious stories, countless glasses of wine, 438 barbecues, and over 30 years later, we are still friends. We were even roommates at one point (kind of a twisted, collegiate version of the Odd Couple). Our husbands are now friends, and we live five minutes away from each other. Although we are different in ways, we are similar enough to feel like sisters. We even unintentionally developed a secret language of sorts over the years that nobody else understands. I think that if you develop a friendship that early in life and are lucky enough to sustain it into adulthood, the past is always with you, even the silly kid stuff. As long as I am friends with Kathy, the past is a living, functioning part of me, as it is the foundation of our relationship. As for our boys, Erik and Dominick are mere months apart but polar opposites in almost every sense (kind of a tiny, pediatric version of the Odd Couple). It is quite obvious that Dominick loves Erik to pieces. Erik is finally learning to appreciate people his own size, and I am now certain he remembers Dominick when we get together. The change in Erik since he has spent time with Dominick has been incredible. His fear of other kids is subsiding, and he is learning to relax and discover the simple joy of play. I can see our own houses and families becoming one to them, and that makes me incredibly happy and proud. I believe that because of this blooming friendship, Erik will grow more confident and eventually make the transition to school with more grace than I imagined possible. I hope Dominick and Erik will never know life without each other's friendship, even if their lives become more and more different as time goes on. That is a very harsh reality I may have to face -- as time goes on, their differences may become more obvious and affect their relationship. I must learn to accept what happens naturally. In the meantime, Erik has a friend who loves him very much -- someone who is teaching him how to relate to, love, and enjoy others, and Brian and I have wonderful friends to laugh and cry with. Sometimes I glimpse a miniature version of myself in Erik, watching kids from afar and feeling terribly different, and I thank God for Dominick, one wonderful kid from a brand new generation brave enough to say hello.

Technical Problem Resolved

I have corrected the problem with the comment feature on this blog. You DO NOT need to start your own blog in order to comment anymore. Sorry about that. What you say will take a little time to show up, as it goes to my mailbox first for me to read in private. Thank you to those of you who commented on commenting. Erik seems to be fighting his ear infection, and the redness in his face is practically gone, making him look gorgeously doll-like to me. I can't stop staring at him. Of course, I AM his mother. Love you all and keep the feedback coming. -- N