Heart-Hangover #1584

Ya know I'd like to keep my cheeks dry today
So stay with me and I'll have it made

-- "No Rain" (Blind Melon)

One of Erik's friends celebrated her 3rd birthday this weekend. We had a fabulous time with our friends at the party. I enjoyed getting a good dose of the sparkles, pastels, and glitter that come with having a little girl around. The snow came down in big, gorgeous flakes all afternoon, and it was very cozy inside. Erik sang "Happy Birthday" with as much emotion and energy as Whitney Houston singing the national anthem and clapped his hands together when the song concluded. He allowed me to steal frosting from his piece of cake, and in return I let him eat in peace without my fussing over him like I usually do. He is really enjoying his own friends now and asks about all of them. I no longer have to listen to him begging me to turn the car around when we are on the way to visit children his age. He was even interested in the opening of presents and was delighted to see a purple monster truck emerge from under layers of wrapping paper. He staged a miniature carjacking and took off with it for the nearest tile floor.

One day after the party, the familiar heart-hangover set in once again. Although it is much easier for me to attend children's birthday parties than it used to be, my response varies greatly these days. While I do just fine sometimes, on other occasions I feel like collapsing the next day. Some people are afraid of the dark. I just happen to be afraid of balloons, buttercream, and birthday candles. Last night I asked Brian if he had difficulty watching Erik interact with everyone, and he very quietly said yes.

That made me feel a little better.

Erik gets in faces, whether they are familiar to him or not. He knows no strangers. He says hello hundreds of times to everyone for at least an hour, which often generates slight irritation from other children. It shows on their faces, which I suddenly feel like slapping, although I suppose I can't blame them. This now keeps us from taking him to the adult functions we would have taken him to when he was younger. While everyone is generally very kind and seems to find Erik's personality delightful, it's hard for me to hear the laughter that goes with taking him anywhere. And I hear it EVERYWHERE. I know they aren't laughing AT Erik, really, but my mama bear protectiveness kicks in each and every time, and that's exhausting. I admit that sometimes I wish he could just blend in a bit. When he saw my friend's father come through the door at the party, he yelled, "HI, SANTA!" The room erupted in laughter, and I wanted to crawl under something and die.

Although we often have to intervene when he is completely inappropriate with a stranger or someone who might find his behavior uncomfortable or disruptive, it is now necessary to let him go in a safe environment and watch what happens, even if it makes me very nervous. It's incredibly difficult for me to do. I was a shy child. I did my best to blend in and not do anything to draw attention to myself unless I was completely at ease. Erik is my polar opposite that way, and it terrifies me. He is always completely comfortable around people. His personality is very unusual. His behavior is even more unusual. I guess "blending in" just isn't part of the plan for Erik.

It's obvious my kid couldn't hide his (halogen) light under a bushel if he tried.

So, after binging on cookies and opening a bottle of good wine by myself yesterday, I suppose I feel better. There's nothing like a sloppy, pathetic session of feeling sorry for myself and letting the emotions ebb and flow. Facing what I feel head on seems to make the next birthday party a little easier.

While I was writing today, I thought of the "Bee Girl" in this music video. I haven't seen it for years. I found it, and it was just what I needed. Watch the whole thing, dance, and enjoy.

Partied Out

(Erik and Sophie)

Erik had a great Sunday. Over the course of the day, we had six children come to visit. Sophie, one of his friends who also has WS, came to visit, as they were vacationing here in town. Erik played with Sophie and her little sister Ava and seemed to have a great time. Ace, the family's new baby boy, caused him to stop in his tracks briefly from time to time as he waited for the frightening infant noises that never came, but he seemed to enjoy his company, anyway. Erik even doled out (manly and casual) kisses when the kids left.

I put a stock pot full of beef stew in the oven in the afternoon and baked a berry cobbler. Friends of ours came to celebrate Brian's 40th birthday, and the house was once again full of children. Brian and I both agreed that Erik has turned the corner as far as playing with children goes. As I have said before, the most disabling facet of WS has been Erik's sensitive hearing. It isolated us from the world to various degrees for years now. While it is still an issue we struggle with, we are now able to enjoy the company of other adults for the first time while Erik plays independently with his friends. I noticed this happened a couple of weeks ago at Kathy's, when Erik stayed in the play room with Dominick for quite some time and I was able to enjoy a glass of wine without a child hanging from my neck. Truthfully, over the past four years, Erik has been less like a child and more like some sort of a fashion accessory I have worn to social gatherings. Without my lanky boy draped over me, I almost didn't know what to do with myself. I imagine this is a combination of Erik's friends maturing and becoming less unpredictable as far as noise and crying goes and Erik adapting to the noise of the outside world. Watching him adapt to compensate for and even overcome portions of his disability, sometimes so efficiently that it is difficult to remember particular struggles, is a beautiful thing to witness. He is amazing. I am also comforted by the fact that he has a high-quality group of friends who will grow up with him. Just like his parents grew up with me over the years.

Emergency Celebration

Erik turns 4 on Tuesday, but we celebrated his birthday yesterday. I have thoroughly enjoyed being able to count down the days with Erik, as he truly understands what birthdays are this year and was excited about who was coming to visit. The theme for this year's party was emergency vehicles. We had a full house, even though some of Erik's biggest fans were unable to attend. I find myself daring to invite more children with each passing year, as Erik handles the extra activity and noise with more and more grace. He did beautifully, and many people commented on how much he has matured. I certainly felt as if everyone here was celebrating all of our hard work over the last year with us. I was incredibly excited to see Bev, the woman who worked with Erik in our home those dark first months, at our door. She misses Erik immensely now that he has moved on to preschool and was able to stay for most of the party. The cake was yet another incredible confection sculpted with love by my parents. It was shaped like a bright red ambulance, complete with working lights and siren. Erik was absolutely thrilled. It soon became mildly dimpled with fingerprints from Erik and the other partygoers of shorter stature who admired it on their way by.

One of my friends from my old job at the clinic offered to arrange for an ambulance to come to the house. I received a text message providing a heads up that they were blocks away, and I quickly told everyone inside to gather on the front porch. There is nothing quite like a group of adults holding wine glasses cheering on an approaching ambulance. We giggled and hoorayed with gusto as it approached with its spasmodic lights piercing the slightly gloomy afternoon. The neighbors probably thought that one of my wild parties had finally claimed a life. The kids were amazed and ran without hesitation to greet my friend and the slightly bashful EMT driving. The back doors were opened wide, and Erik was coaxed inside. Erik stood next to the stretcher and said, "Look at YOU on that ambulance!" He cautiously inspected everything, including the vehicle's undercarriage, by the time we headed back inside to feast on pizza. It was a very surreal and oddly festive sight to behold.

We then sliced into the cake. The candles were no match for Erik's lung power. He unwrapped presents for the first time, encouraged and guided a little by Brian this year. It was good to see him actually tearing wrapping paper and being interested in what was inside the boxes, not just the boxes themselves. He enjoyed the kids and adults around him and understood that it was his day. Towards the end of the party he played with the other children in his bedroom, although they mostly played around him and asked him to join them in their very imaginative games. Erik said goodbye as each of them left, and the sweet, strange formality of his words made us smile.

I was a little emotional today. After some of the stress that comes with planning an event like this finally lifted and all was said and done, I realized we had been given the best gift of all: A rare day of feeling almost completely NORMAL.

Sweet!

(Videos and slide show coming soon)

Dandy One

(My father helping Erik blow bubbles. Erik calls the large bubbles "dandy ones.")

I had a good day today. I don't seem to have many these days. It was rather lovely.

Despite the heat, autumn is in the air. There is the scent of earth and ailing foliage baking in the hot sun. This warm mixture of death and life fills my nostrils. I roll down the windows in my vehicle and let all of it into my lungs. I drive past my old schools, one of which has recently been razed to make way for a new one, and feel more than a little nostalgic. Last week I drove past the ancient brick building that housed my fourth grade physical education class and had flashbacks of running laps over the glossy wooden floor. My gym instructor sometimes wore paint on her face that make her look like a rather fetching version of Gene Simmons. If the boys didn't behave, she would kiss them and leave black and white smudges on their cheeks. These days that kind of stunt would trigger a multimillion dollar lawsuit. Now that I think about it, she was probably the last gym teacher I had that was remotely interested in kissing boys, anyway.

Not that there is anything wrong with that.

Erik continues to do well off dairy. He refuses to consume soy milk but will eat soy yogurt and cheese. His bowel issues have almost completely resolved. He has discovered the joy of asking more complex questions. He has queried, "Are you ready to go now?" and "Do you watch Elmo?" He seems to be realizing that these kinds of questions start conversations much more effectively than random words (Boppa! Monster trucks! Wheels!) or rumbling engine sounds, which previously made strangers squint in confusion and look to me for translation. He still tells jokes that make sense only to him, and he laughs hysterically at them. He is amazing. His motor skills are still horrendous, and he doesn't show signs of substantial improvement in this area, but he gets around quite well if he is not distracted. Once he is outside in a bustling environment, he tends to stumble and fall more. Amazingly, it looks like soccer comes naturally to him. While he can dart about kicking a ball, he seems quite annoyed when the concept of passing it back and forth is suggested.

He has finally mastered the stairs in our house. I will never forget his therapist walking him up and down our stairs over and over. His legs just didn't seem to work the way they should, and I dreaded this exercise because it seemed hopeless to me. When her Subaru used to pull out of the driveway, I would burst into tears. I still remember this well and detest our stairs, although Erik now races up and down them at light speed, sometimes not even bothering to use the handrail. He has only fallen once.

I got his little plastic blocks out the other day, bracing myself for yet another disappointment, and he actually stacked the dang things for the first time. He was shaky, but he did it and seemed annoyed when I tried to help, which I was pleased to see. He obsesses less about wheels and more about sprinklers, talking about sprinklers and sprinkler-related paraphernalia each time we leave the house or drive past a park. He wants to go next door to see the neighbors' sprinklers and asks me over and over if they will be on, sometimes as soon as he opens his eyes in the morning. The last time we went to a playground, he was merely interested in playing with the drinking fountain, using the slide and equipment only to humor me.

Erik's echocardiogram is scheduled for the 18th of November. There is no way we will be able to get him to lie still for the study, so sedation will likely be necessary. I will be fine after the study but will feel intermittently nauseated for weeks until that date comes and goes. If all goes well, we only have one more year of annual heart checks. Hallelujah.

Tonight we just finished my father's birthday dinner, and the house smells like meatloaf and potatoes. I stuck a candle into the glistening crust of a freshly-baked apple pie my mother made, and we sang "Happy Birthday." Erik sang the loudest. He loves birthdays. If you ever want him to sing to you on yours, just give me a call, and I'll put him on for you.

All in all, it was a very good day.

I'm Home

Imagine...

Being a first grader attending a school hundreds of miles away from the closest ocean shore. Taking a trip to the beach to collect seashells to prepare for your moment of glory at show and tell when you returned home. Walking along the glossy, packed strip of sand and marveling at hundreds of colorful, glistening seashells nestled in ocean foam just hours after a turbulent storm. Plucking them from the sand and placing them carefully in a basket. Knowing that this moment alone on the beach was a rare gift, just as these natural works of art were, but knowing you would have to choose only a small handful of them to share with others during a short period of time.

How would you select the ones to share? How would you feel about this heavy basket full of treasures, knowing most of them would go unseen by others?

This is how I feel about my memories of Sophie's Run this weekend. This year was very special, and I am excited to share my memories of the event but realize that even my normally endless supply of words I use to describe my experiences will not do them justice. I came back happy and full of energy. I will sort through them all and bring out the most colorful ones to share with you but will hold the others close and draw from their strength and beauty to keep me going through the year.

For those of you who were kind enough to share the day with me, thank you very much. I feel stronger than ever. It was truly a celebration this year. And for those of you I just met this weekend, I'm honored to know you and am looking forward to spending more time with you.

Thank you.

Three Candles Part Deux

Three Candles

I plan on posting a slide show and perhaps a description of how Erik's party went, but it will take me some time to gather photos and put it together. In the meantime, enjoy this video of the three of us. I imagined his birthday would get less emotional as he grew, but this one was a doozy. I was fighting off tears of pure joy! About the time this video ends, Erik began singing "Happy Birthday" again, and everybody joined in for a second round. It was one of the most touching things I had ever seen!

Many thanks to my parents for constructing this year's cake, which went wonderfully with the construction theme, and to my baby brother, who sent the drawing of the backhoe that is on display next to the cake. I plan on getting it framed and hanging it in Erik's room. Thanks also to everybody who came and helped Erik welcome year number three. There were also friends and family who were unable to be present this year, and we missed you terribly but hope to see you soon.

It was a beautiful, happy day.

Flying Colors

What you don't have you don't need it now
What you don't know you can feel it somehow

-- U2 "Beautiful Day"

The song I listened to several times the day Erik was born. It still makes me cry.



Yes, I know it's early. I have been up since 2:15 with a briefly sobbing child. I have no idea how long he had been lying in a ball on the floor behind his door with his bedroom light on crying, so guilt prompted me to scoop him up in my arms and take him to bed with us. This is something I rarely do. I put him between us, and his hands ran over the contours of each of our faces in the dark. Realizing his father was lying there, he greeted him with the usual, "Hi, Booga." After a little mumbling to himself in an obviously happy state of mind, he fell into a deep sleep.

Erik snores like a dump truck repeatedly driving through a nitroglycerin plant. In fact, he makes his father look like a complete amateur. No, it's not normal for a toddler to snore. I have been informed of this and was provided handouts on sleep apnea/congestive heart failure. Although I will address this with his physician at his upcoming routine visit, while I listened to him this morning, it was quite apparent the snoring is just the familiar rattle in his chest magnified. He used to grunt loudly as a baby when he concentrated on something, and many folks thought he had asthma, as they mistook it for deep wheezing. I never worried about this and grew to love it along with the other strange physical quirks my baby has. When your body is missing one of the essential components to keep things springy and tight, you can't expect everything in your chest not to shimmy around a bit. However, sleeping with him is completely futile. My baby's adorable, but he's a freaking rattletrap. Always has been.

Today is Erik's birthday party. Although there will be brightly colored balloons and the appropriate decorations, I have kept the pediatric guest list to a minimum this year once again because of Erik's tastes/hearing, and the annual event still has a very definite cocktail party feel to it with a few adult friends and family members. It probably always will, because that's where Erik is happiest--around adults having a good time. I fantasize about Erik being the center of attention at future parties here, playing the piano and loving every second of it. Maybe I can set up a tip jar.

Erik's IFSP was Thursday. He was tested by two staff members at his school, one of whom has worked with him since he first attended and one of whom was present the awful day he was labeled "severely developmentally delayed" for reasons we had yet to discover. I'm delighted to report that the evaluation room no longer infuses me with depression that lingers long after I exit now. However, the obnoxious hum of the fluorescent lights, the bland-colored miniature furniture, and the looming stacks of paperwork inside make me instantly exhausted to my bones.

Erik was seated at the tiny table and given a rapid salvo of instructions to follow, including answering questions about photos in a book, stacking blocks in a tall tower, and putting rings on a stacking toy. He was then asked to climb a set of tiny stairs. I sat silently with Brian, and we attempted not to be a distraction during testing. Although Erik was completely distracted by the sounds in the hall and we had to close the blinds to minimize visual stimuli, he did beautifully. The kid obviously doesn't test well, and it was quite apparent to these ladies that he knew exactly how to answer the questions and respond to their instructions but would rather be socializing with them or finding a toy truck to roll around the room. The tester that is not familiar with Erik kept having to hide her face in the crook of her arm or turn away, as he would greet her repeatedly in falsetto, and she tried to remain serious, very ineffectively trying to stifle her giggles. He would smile sweetly and cock his head often, precisely imitating the cute noises Janet made as she demonstrated what she wanted him to do.

Erik's preschool teacher then joined us, and we completed his goals. I explained that if there was anything I have learned at their facility, it was that I believe anything is possible for Erik. Goals on paper looked insurmountable at first, and I was easily discouraged. At this point, even if I wince and wonder if one of his goals is realistic, I can freely admit that all things are possible. It's not the end of the world if he doesn't accomplish a specific goal set, but he has demonstrated time and time again that I need not worry about that happening regularly.

The test was scored down the hall while we waited. Instead of feeling anxious, I tried to fight falling asleep as the room did its best to suck the life force from me. As for the test results, we will receive a formal report by mail soon, but Janet and Allie soon returned and let us glance at the paperwork after smiling and informing us we might be surprised by the results.

Most areas of Erik's development were quite comfortably charted in the meat of the purple "typical" range on the graph.

Typical?

Wow.

The only part of the testing he failed miserably was gross motor. He was asked to walk up and down that set of tiny wooden stairs in the room and appeared as though he had downed four Long Island ice teas before attempting this. It didn't help that he wasn't interested in the task, either. I again explained the visuospatial problems that are and always will be a fact of life for Erik and then my confidence in him, knowing he will grow and master using other senses to accomplish tasks like these during which his eyes and brain don't seem to communicate normally. He will find his own way in his own time. I couldn't be more proud or more confident.

By looking at the test scores, Erik would NOT qualify for special education services. Oh, yes. He's that good. However, because of his diagnosis, he automatically qualifies. My hope for the future is to find a niche for Erik between special education and typical education to guide him through school. I want him to enjoy a normal life but receive the services that work for him, no matter what they are. I am not a mother who insists upon everything in Erik's life being "perfectly typical," because he's not and never will be. However, I am quite sure there is a perfect place that's typical for Erik and our family in the world, and we are well on our way to finding it. That's very exciting.

Three years ago tomorrow at this time of the morning, I was exactly one week overdue, bulging with baby. I was probably awake in this very chair making the music CD I would take to the hospital to listen to while I was in labor, blissfully unaware that Erik was about to give us all a great scare on the monitor that would be strapped around me to record his mysterious life rhythm. He threatened to quietly slip away from this world, but hours later he would be tucked into a hospital bed with me sleeping peacefully, as if he had been with me all of my life.

I will be the mother of a 3-year-old this weekend.

That's exciting, too.

I'm Not Dead Yet

For the last week I have been plagued with gradually increasing fatigue, the likes of which I have not known since my pregnancies. It soaked into all of my bones and eventually toppled me into a pile on the love seat, the place I normally go to die quietly. I spent the majority of the weekend there under a blanket watching trashy movies. I managed to go about my duties during the week, including a business lunch and an outing to the martini bar, but I felt something was horribly wrong. I made a mental note to call my doctor and have blood drawn to make sure I wasn't the next in our familial line of women with a fizzling thyroid. Yesterday I awoke with a slightly sore throat, and my situation suddenly became very clear and much less sinister. I apparently have been fighting the germs Erik had picked up at day care one week ago. All week long he cried and shot impressive streamers of mucus from each nostril. He has taken a liking to sucking water from the straw in my Weight Watchers water jug. Since Erik continues to drool all over me daily, anyway, I thought there was no harm in that. Now that my illness has manifested itself in the form of a common cold and I have stopped fighting it, the fatigue is subsiding and I feel like me again. Erik, of course, is back to his old self.

Yesterday I got myself together and attended Dominick's 3rd birthday party. Overall, I enjoyed myself immensely, even though Brian had to leave early for his fantasy football draft meeting across town. Anything involving other children is and will likely always be difficult for me to attend. There is always an emotional hangover of varying severity hours to days later. There are some situations I avoid entirely, such as baby showers, which I will likely never again attend. I never know how a birthday party will affect me, but I am usually up for finding out. I wouldn't miss Dominick's for the world, anyway. Kathy called before the party to remind us to bring Erik's swim trunks for the Slip n Slide. I brought his pool therapy bag with us but knew deep down he would not participate in that activity, as he would simply get run over. When we arrived, I poured myself a glass of red wine and found a chair under a tree, where Erik sat on my lap and we watched the party unfold. I was able to coax him into playing with a toy monster truck and later an abandoned pile of plastic tools while the other children swarmed the play equipment and Slip n Slide. There were other 1 and 2-year-olds there, walking around like they had done so for years, which always makes me giggle but gives me a giant case of the creeps, too. They still look like walking fetuses to me. The worst, though, is the soft coo or loud squealing of babies, which remains foreign and strange to me.

These thoughts, of course, played in my mind in the background as I enjoyed the company of my friends and their extended families, which many years of events like these have made me a permanent member of. As the children whacked at an impressively fortified Curious George pinata built to withstand more force than an M4 Sherman tank, my friend Kathy asked if Erik would like a try. I almost hugged her for thinking of him but was unsure how to answer this question. Erik was in the driveway quietly playing with toys and wouldn't know if he missed out or not, but I shrugged and said that he might. My heart began to pound, as I had no idea how he would react, and I was trying this for the first time in front of a crowd. I retrieved him and placed him in front of the pinata. I wrapped his thick fingers around the broomstick and raised his arm into the air, pushing it forward, feeling the wood connect gently with the surface of the pinata. By the second whack, I felt the muscles in his arm contract and his arm move forward ever so slightly under its own power under my steadying hand. When I felt this tiny movement, I smiled. One more whack, and we were done. Erik enjoyed the cheering and applause and then went back into his own world again. I returned to watching the walking fetuses swinging sticks with ease in this slightly disturbing birthday tradition, Tootsie Rolls beginning to bleed from punched-in holes in the body of the ailing paper mache monkey. Once the candy spilled en masse from a giant crevice, I watched the other kids scramble forward to stuff candy into their pockets. Oh, what the hell. I ran forward as well, gathered a few candies, and returned to Erik in the driveway. I placed a few small pieces I had unwrapped into his palm, and he immediately turned his hand over, scattering them onto the asphalt. He returned to rolling a plastic screwdriver on the ground. I felt my heart sink but knew that I had to try. I consumed the remainder of the candy myself.

On the drive home, I thought long and hard about my friends, some of whom were holding brand new babies who slept peacefully or gurgled and cooed like all babies should. My heart swelled for them and I actually thanked God they will never have to go through what we go through on a daily basis. Even though I am horribly envious, I am now able to look outside myself and be genuinely happy for them for the very first time.

I have looked back at my survival over the last year and have determined that, for me, survival has been comprised of a few essential components. Firstly, I stick to a predictable daily routine, which provides me comfort in its monotony and predictability. I avoid situations that trigger unmanageable depression, such as baby showers, while I let myself attend others that have a more unclear outcome. If there is a negative result, I can always alter my game plan later, at least until I am ready to try again. I now take better care of myself, which includes getting fit and occasionally indulging in good wine or getting my toes/hair done. I can see now that my personal relationships are suffering greatly, but I hope that I will learn to better care for them with time. I honestly don't know how to remedy that at the moment. Right now I am still busy learning to heal but see that next on the horizon.

All I can do it attack this one gentle whack at a time.