Epidermis Profundus

I have thought long and hard about the cruel words that occasionally come my way. It's actually amazing they don't come more often, but 99.9% of the feedback I have ever received here has been positive. Maybe that's why it's so shocking to hear something negative. I could start a blog on casserole recipes or little stories about my cat and would expect more negativity. In the old days, I would have cried for two days. This time, there were no tears shed whatosever. Instead, the four ugly words followed me like obscene little ghosts as I went about my daily activities, but a glance over my shoulder reveals that they are beginning to vaporize. Knowing the way I think, I will likely never forget them, but they will get shoved in a box somewhere in my brain.

My skin doesn't feel very thick, but maybe I am making progress after all. If someone pokes fun at my son by calling him horrible names and it doesn't bother me, my guess is that there would be something incredibly wrong with me. I want thick skin, not gnarly calluses.

Right?

Of COURSE it will hurt my heart. However, I hope that with each passing year it gets a little easier to heal these types of wounds. That they will feel less like axe wounds and more like paper cuts. I have faith that it will be easier. Looking at my latest response, it is clear that it already has. I can hardly read what I wrote two years ago here, as my heart fractures into millions of pieces. I am enjoying life again. That's progress.

When I started this blog, I did it thinking I was just whispering my feelings into the darkness of the universe because, quite frankly, I didn't know what else to do or where to turn. Writing has always been a comfort to me ever since I could hold a pencil. To find out someone is actually reading my words and might even feel a little less alone, WS child or not -- well, that's comforting to me, too.

It's nice to be heard and have hands to hold. Thank you.

Thin Skin

Should I yank the videos and the photos of Erik off the internet as his disability becomes more apparent and his appearance becomes just a little more unusual with each passing year? Do I let strangers who hurt me with their horrible comments win, or do I learn to ignore them? Can I at least think of a snappy retort or two? I am in need of much thicker skin. I knew the risks when I decided to share Erik with the world. I thought I was ready, but the game is always changing on me.

I know I am tougher than I used to be, but I have a horribly long way to go.

Merry Christmas 2008

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.

A Close Shave

I am incredibly excited.

Because of Erik's anxiety and sensory issues, taking him for a professional haircut has never been an option. Brian purchased an electric hair clipper kit at Costco years ago. I fell in love with the little plastic cape, the cute little mirror, and the collection of clipper guards in various lengths. I cut Brian's hair twice with it but decided doing this was too scary. After all, Brian works in an office setting and needs to look professional. To cut Erik's hair, I have been using a pair of tiny scissors with blunt ends ever since he grew his first strands. He has so much of it now that this has become a ridiculous endeavor. I can get it to look presentable, but when it grows out, it sticks up all over the place. And I have lacerated the loose skin overlying my knuckles more than once when he moves suddenly. I bleed but continue to cut because getting him to sit still is next to impossible.

For the past couple of haircuts, I have taken the silver hair clipper out of its zippered case. I put it on the counter and let Erik touch it. After a while, I turn it on to let it buzz and hum under his fingers. Then I put it away and store it back under the sink before I begin hacking away at his hair with the baby scissors.

Today I got the set out again. I found a guard that looked like it would work, and I snapped it onto the shaver. I took a deep breath and readied myself to try something new. I told Erik he could watch his John Deere DVD after I cut his hair, and he agreed to sit on the counter for me. He very quickly spotted the shaver and allowed me to turn the thing on once again. We talked about it for a minute, and then I ran it across the top of his head a couple of times at warp speed. A couple of alarmingly giant gobs of blond hair fell onto the counter. I winced but continued, hoping my quick shear would not ruin any upcoming Christmas photos. He squinted his eyes shut, still smiling, and let me continue, seemingly enjoying the sensation on his skull.

What used to take me 20 minutes now takes me two. Sure, the guard was a bit on the short side, and he looks like a the youngest jarhead in history, but it's fairly even. He was tickled pink when we were through because he has seen his father use an electric razor and seems to like being a little more grown up these days.

Dread

Wake up look around memorize what you see it may be gone tomorrow everything changes. Someday there will be nothing but what is remembered there may be no-one to remember it.

-- Michael Dransfield

Last night I dreamed I was attending a business meeting. The type of ridiculous time-waster I used to be forced to participate in years ago when I worked at a real office with real people. We sat around a glass table on a deck atop a skyscraper. We were surrounded by thick railings and glossy plants in chunky pots. As I chewed on the end of my pen and went to my own happy daydream-place, I glanced down at the streets below. I saw water gush up the stairs from the entrance of the subway. The thick, forceful column pushed a handful of dark silhouettes of what I finally determined were people into the air before slamming them down onto the sidewalk. After that, they were still and looked like soggy, crushed ants. I slowly stopped my chewing, removed the pen from my mouth, and realized I heard faint screams. I looked up into the sky and saw giant chunks of rock falling through the atmosphere, leaving lazy trails of wispy, toxic smoke. I looked at the people around me to gauge their reactions and determine my own socially acceptable response. They quickly gathered their papers and belongings. They were going for the door to the inside the building. I was suddenly aware of the lovely warmth of the sunlight on the skin of my arms and face and the summer breeze that ruffled my hair.

I remained seated, attempted to accept my fate, and said, "I think I'll stay here. It would be a shame to die inside on such a beautiful day."

I wanted to see what was taking place, even though I was doomed, anyway. I was left alone.

Everything went blurry for a while, as dreams tend to do. Because I voiced my preferences aloud (always a mistake in my case), I soon found myself trapped inside the confines of the glassy building. There were tiny, white garlands of lights strung around poles for Christmas, and people sprinted in every direction. I thought how strange it was that I couldn't find the familiar block lettering of the required exit signs. I knew in my heart that I would never make it outside. I wondered what I would do when the power went out. It really bothered me that I couldn't see what was coming for me. That I would die in the ruins of a dark building alone.

Then I woke up.

My heart flailed inside my rib cage, and I marveled at the sharp feeling of adrenaline surging through my veins and arteries while the rest of my body was almost paralyzed and half asleep. That alone has to be hard on a person. I could hear my pulse pounding in my ears.

I think I know why I had that dream. Partly, anyway.

I hate the unknown. It's also difficult watching somebody die, like I fear my friend is. The more time that passes, chances are his diagnosis of ALS is correct. I'm still trying to grip firmly onto my previous toasty-warm cloak of denial. We had a really good day together this week, and it was easy to forget that his body is giving out. I made him chicken enchilada soup, and he even ate a sandwich I prepared without a problem. He rarely eats anymore because it all goes down into his lungs and causes infection, as his throat no longer functions the way it should. However, if you ignore the limp and the cough, it's pretty darn easy to forget he's sick at all. Yesterday, though, he told me that he was speaking in a meeting and had to excuse himself. His lungs are beginning to fail at a frightening rate. Each week seems to bring another subtle change. Changes I usually choose to ignore or have trouble visualizing at all. He is consulting another doctor in another state, but there doesn't seem to be much anyone can do for him. He lives on nebulizers, pills, and physical therapy, but nothing seems to slow the course of this disease.

There are still good days. Days during which I feel as if we are sitting out in the sunshine, telling stupid jokes and laughing ourselves silly. Just like we used to do when our lives were so different years ago. Back in the days before we thought about things like developmental disabilities or neurodegenerative disease. I don't like talking about his illness, especially with him. Most of the time I just think of other things. Sometimes we talk about him finding a way to send me messages when he's gone.

My tree is decorated, and I bake cookies. I go to parties with Brian. I love the fluffy snow falling from the sky like powdered sugar. It's strange doing little things and pretending that everything is fine when I know he is suffering out there somewhere on his own. But I do. I do all that I can afford emotionally within the limits of practicality, but I have a life to live here and other people to care for, even though I'm hurting deep inside at various levels all of the time. I hate that my life is going to change yet again in the near future. I hate change. I know what's coming. I don't know how or when, but it's out there. I just can't see it yet.

And it's leaving a smoky trail as it searches for its target.

(Update: He is in the hospital this evening with yet another lung infection.)

Imperfection

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

But I didn't cry.

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

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

But I didn't cry.

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

How imperfection makes the world richer and more interesting.

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

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

And I didn't even cry.

E-Mail Part Deux

I just saw the advertisement for novelty IQ tests on Facebook I had an issue with 10 days ago. It no longer says "(4) of your friends are RETARDS!" It now says, "(4) of your friends are IDIOTS!" By the way, I never got a response to the e-mail I sent.

Is it tasteless? Yes. Can I live with it? Hell, yes.

Coincidence? Maybe. I'll keep my eyes open.

In any case, I plan to keep on SHOUTING. Thanks for the inspiration, ladies.

Potty Training Continued...

My son sat on the toilet today! He did not even scream, cry, or curse at me. He seemed to even enjoy the experience. I ask him regularly if he wants to try it, and he usually firmly but politely lets me know that will not be happening, after which I let it drop. Forcing the issue has only caused more of a delay. Yesterday he gave me a couple of unenthusiastic okays. He sat down on two occasions and even accomplished something during one session. Stinky Dog came along for the ride and gave him encouragement in his deep voice. It looks like I will eventually need to schedule regular visits to the bathroom, as he does not give me clear signs (until it's too late) indicating he needs to go and doesn't seem to give a hoot if he is sitting in his own filth or not. He does enjoy fruit snacks, however, and is pleased when he is presented with those, so that gives him some incentive.

Last summer I discovered Erik's diaper was overflowing at Los Angeles International Airport five minutes before our plane boarded. I had absolutely no place to change my long-limbed boy. Changing tables are no longer structurally sound for Erik, as he would likely snap them right off the wall. I ended up finding a counter in a janitor's area inside the ladies' room and I did it there. It was a complete nightmare, after which I wanted to bathe in gallons of hand sanitizer, but I shudder to think what would have happened if we had boarded the small plane with a loaded diaper. There wasn't enough room to stash a larger carry on bag, let alone scoop poop from my child's pants without putting my elbow in a fellow passenger's eye.

We watched Potty Power again yesterday. In this DVD, the narrator, named Jessica, and her friend, "TP" (a talking roll of toilet paper that is noticeably suddenly absent during the segment on wiping bottoms), tell the story of Princess Jill, a seemingly chronically constipated little girl who refuses to use the powder room. The court jester, a disturbingly pervy little creature who sings and tells really horrible jokes that make me laugh every time, decides that the princess is displeased with the color of her potty, which looks as if someone got a hold of it with a BeDazzler, and paints it green. The king and queen then replace the princess's diaper with "royal underwear," a term which now makes Erik giggle, and her potty dilemma magically resolves.

Erik absolutely adores this video. It is disturbing, and I find myself singing songs like "Wipe Your Bottom" and "Sittin' On the Potty" in the car, but it has sparked Erik's interest in using the bathroom.

Unfortunately, his potty problems run much deeper than a fresh layer of kelly-green paint. He seems to find the setup on the adult commode uncomfortable and awkward, but he is far too big for the potty chair I purchased with the intention of having completely trained him two years ago. However, he does understand the toilet and its accessories and is slightly interested -- but not quite enough yet to make it a habit. He is making some progress, and after talking to his teachers, we have decided not to force the issue.

There are signs of progress now in terms of general development as well. He is beginning to enjoy slipping our shoes and clothing on. He very confidently clomps around in our sneakers and boots and finds this greatly amusing. I figure this is a step in the right direction. In fact, today he put on his father's hat, looked at me, and said, "Hi, Booga," which is something Brian always says to him when he comes through the door after work. He is thinking about being like us now, and that is wonderful...and even a little flattering.

Hopefully, that will carry over into the lavatory!

WSA National Convention News

It looks like we will be traveling to St. Louis, Missouri for the convention in 2010!

Important

At our mothers' support group this week, I found myself telling the other women how each of our children has a place in this world, even if we cannot see it at the present time. No matter how severe their disabilities or how short their time on this planet may be, they can and will change the world using the skills they have, one person at a time. I believe that you do not need to know how to add, drive a car, or even speak to make a difference. As I spoke, I realized that my words seemed to be forming more of a question than a statement and that I might be trying to reassure myself that Erik will be okay. What's important for me to remember is that Erik's path is going in a different direction than the neat, tidy one I imagined before the diagnosis came. He will likely not perform surgery, play professional football, walk on the moon, or even do his own taxes, but the things he does are indeed important in ways I don't necessarily understand, and they are straight from his heart. Erik just being Erik is enough to change the people around him forever. He has accomplished a lot in four short years, and I'm sure I don't see the half of it.

Maybe it's the dips on the hormonal roller coaster I seem to be on this week, but the following movie really touched me. I found it in my in box this morning waiting for me just when I needed it. It illustrates my hope for our kids beautifully and soothes my fears somewhat about my own child. As I know that many of you have the same hopes and fears as I do, I'll share it here.

First Christmas Party

We attended the Christmas party at Erik's school last night. Erik has been a part of this place for quite some time now, but we have never been to one of these parties. I suppose I never felt like spending any of my free time there before. Earlier in the day I asked Erik if he was interested in seeing Santa, and I was amazed by his newfound enthusiasm. His reaction sparked excitement in me that I haven't felt in the past few years. I put on a fresh coat of lipstick and switched out his shirt for something with less food smeared down the front. I realized I was having yet another "normal mom moment" and enjoyed the feeling. It's nice no longer being trapped at home by a noisy world.

When we arrived at the school, the street was clogged with cars. The entrance was decorated with a bright green garland of lights, and people were filtering through the front door with their children. Erik was greeted by the staff, and we made our way to the little gym at the end of the hall.

The long, cramping line to see Santa was made up of people who looked mostly only vaguely familiar. I eventually spotted a couple mothers and their spouses I knew well and chatted with them as we stood in line. The sweltering temperature in the room almost took my breath away at first, and I stripped off my jacket. We stood next to twin girls whose mother introduced herself and reminded us that we were invited to their birthday party this weekend. I racked my brain for items 5-year-old girls might like to play with and tried not to panic about being immersed in yet another social situation. When we made it to the front of the line, Santa extended his arms to welcome Erik. It was a sweet sight to see. Erik didn't hesitate this year, even though he has only seen Santa once. He went quickly to him and was placed on his lap. I snapped a couple of photos and then was approached by another mother who introduced herself and shook my hand firmly. She explained that her daughter rode the school bus with Erik last year and that Erik was her own personal favorite. She admitted she had really fallen in love with him. She remembered out loud when Erik first arrived at the school. How he could barely walk and never said a word. How she was amazed by his progress over time. I felt unexpected emotion wash over me as memories of the first two dark years of Erik's life flooded my brain. I remembered the struggles we had in the very room we stood in. I smiled and successfully fought off tears, realizing I have packed many of those memories away now and have moved on but that they would always remain inside of me. I shook off the feeling and told her that I loved her daughter, a little girl with beautiful blond hair, a sweet smile, profound compassion for my anxious son, and an extra chromosome. She smiled back at me and disappeared back into the crowd. I am amazed at how easily people approach me these days and show our family such kindness. It was difficult but eye opening to have a view into our little world from the outside. It is nice to know that we are not invisible after all. I needed that.

On our way out, Erik did the cupcake walk with Brian and emerged with a goatee made of slimy chocolate frosting. His teacher greeted me and reported that this week he followed her instructions for the first time. She said it was no longer necesssary to lead my passive son through each and every thing and that he had improved a great deal. She described how he used to be, too.

Whew.

Brian purchased a snack-sized bag of cookies at the bake sale table, and I bought a star for the Christmas tree in the hall. I put Erik's name on the tag and hung it from a branch. I try to give back a little every year. The funds for the school are evaporating, but I have hope that things will change.

They sure have for us.

Manly Chortle

I tickled Stinky Dog's tummy as I crawled into bed next to Erik this morning, and the putrid, floppy stuffed animal actually laughed. It was a deep, totally genuine sound that made me giggle, too.

Methinks the elusive pretend play component of childhood is finally kicking in. I'll have to check, but I think Erik could possibly be the first ventriloquist with WS in the world.

America's Got Talent, here we come.

Pissed Off E-Mail

To an internet company who is advertising IQ tests for entertainment purposes.

To Whom it May Concern:

I just spotted your link on my Facebook page that read, "4 of your friends are RETARDED."

I am thankful most people are not parents of someone who is developmentally disabled. Not because they are not a complete joy to be around but because the road is difficult, and it does not help that the world makes it very clear that they do not fit in. One of the ways this is apparent is the rampant use of the word "retarded" (slang). In fact, I would consider this bordering on hate speech. It is not acceptable anymore to use this word (even the medical field is dropping it), and many of my friends on Facebook who see these links have children who would have been considered classically "retarded." We find this offensive. Period.

My son was born with a genetic birth defect, and I was told that he would be "retarded." It was like a punch in the stomach. Put yourself in my shoes. How would you feel if you found your child was the butt of jokes? No matter what your age, it is no longer appropriate to use this word. Period.

I challenge you to change your thinking and improve your public image by removing this word from your links that pop up on sites like Facebook. If you do, I will sing your praises to EVERYONE who will listen. My friends are already spreading the word. And we have very LOUD voices. Please forward this to the appropriate parties.

Very sincerely,

The mother of a developmentally disabled child who does not think the R word is funny

One of Those Days

Another first: Erik locked me out of the house.

I stand on the front porch, completely embarassed because my girlfriend is leaving and has to be somewhere five minutes ago. She is on her cell phone and looks in my direction with a concerned look on her face. I smile sheepishly and peer through the side light window. I see Erik's face and talk slowly and loudly, begging him to open the door. He stares back, seemingly quite pleased with himself. He looks directly at me and smiles defiantly, enjoying the power he suddenly has. I finally decide to trick him by asking him if he wants to go outside, and I instantly hear the deadbolt slide, freeing the door. I jam my foot in the door like the world's rudest salesman and stomp inside the house, raising my voice and telling him that he is never to do that again. My fear for his safety has transformed to frustration and anger. He quickly bursts into tears, and his face goes red and scrunchy. I roll my eyes, hug him, and take him outside to play.

He rides the yellow tricycle with the little seat he could not balance himself on before for the very first time. And he rides it all the way around my Jeep in the driveway, even steering the dang thing.

I cheer loudly.