Ragweed.

For any of you out there experiencing any mom guilt or just feeling plain lazy, this could make you feel better.  Here is a list of things I should have done today but didn't:

1.  Shower

2. Get dressed before 11 a.m.

3. Get child dressed before 11 a.m. 

4. Fold laundry

5. Put a new trash bag in the compactor;  use paper bag on the counter for trash instead

6. Return emails

7. Return calls

8. Buy sunflower seed butter since Louie's school has banned peanut butter

9. Make vet appointment for our dog who I sort of backed over a little bit yesterday.  I just heard a yelp and I immediately stopped the car.  We checked her out and she's walking fine and acting normal. But we just want to make sure.  I'm not that big of a slob.  Am I?

11.  Give children, covered in mac-n-cheese and avocado, a bath

This could go on but you don't want to hear every item on my short or long-term to-do list. You get the picture.  Oh yeah, and I should have wet Swiftered my kitchen floor because yet again, my boys have black hands and knees from contact with floor.  I'm feeling especially guilty about that one for some reason.  But let me reassure you, I'm okay. I really am.  Kinda of.  I think.  In fact, the reason I'm writing this is because I rarely have such a completely out-of-sync, greasy-hair day.  At least I was able to accomplish all basic child care duties including diapering, feeding and disbursement of drinks.  Here's what I actually did:

1.  8:20 a.m. Put Ace down for his morning nap 40 minutes earlier than normal so I could go back to sleep

2. 8:21 a.m. Went back to sleep

3. 10:00 a.m. Hear Ace awake, run in, throw some books in his bed and run out (thinking, what, I don't know...that he would go back to sleep?)

4.  10:05 a.m.  Books didn't accomplish anything.  Get Ace out of bed. 

5.  10:15 Get back in bed and give myself a pep talk while Ace pleads to get up (in my bed). Up. Up!  UPPPPP!!!!  

6.  11:00 a.m. Stumble into Publix to get allergy medication.  Maybe this is allergies, I'm thinking.  My doctor says the ragweed count is high.  

7.  12:00 Feed Ace, pick up Louie from school, put both to bed

8.  1:45 p.m. Go to bed

9.  2:00 p.m. Change Louie's dirty diaper

10. 2:02 p.m. Go to bed

11. 2:45 p.m. Change Louie's dirty diaper

12. 3:30 p.m. Louie is obviously not going to sleep so I get him up.  Ace is up.  

13. 3:35 p.m. Go back to bed and guiltily watch The Hills

14. 3:50 p.m. Boys start to get whiny. Put boys in "ball pit" which is our pack-n-play filled with balls.  They can't get out.  Repeat, they CAN'T get out.  

15.  3:52 p.m. Guiltily finish watching The Hills

I'll stop now.  Half of you are probably trying to find the number to Tennessee Child Protective Services.  Today certainly wasn't one of the award-winning mom days I usually have! 

I rallied around 4:50 and took the little guys outside for a while.  And made their dinner. While I was making (boiling noodles) their dinner I heard a tap, pause, tap, pause, tap.  I'm at the sink, draining macaroni.  Putting trash in my paper trash bag.  Tap, pause, tap, pause, tap.  Ace is sitting below me "helping" unload the dishwasher (yes, I unloaded it - I was rallying!).  It was such a subtle and unusual sound.  I turn around, realizing it's the sound of walking. Louie is walking from the island to the chair. Independently. Not prompted. Not with one person tricking him by letting go of his hand while another person is holding a highly desired item.  He was walking quasi-independently last week - quasi because he would walk independently if forced, prompted and bribed.  

But today, it was his choice.  He made the choice to walk.  For the past two years, those are the steps I've been waiting for.  

Snowflakes.

I understand.  Seems like every time you turn around I'm complaining or upset or the ever-present and somewhat dramatic "grieving".  Okay, so fair warning, this is a dramatic, over-the-top, I have a knot in my stomach post.  Shall we?  

It seems Lucas is drifting farther (further?) away.  I can't figure out why.  The reasons I come up with stretch beyond my limits of thought at times.  Could it be this?  Could it be that?  Should I do this?  Should I do that? 

"He's in there somewhere; he's not lost" Chris reassures me. Is it the life-sucking autism that keeps pulling him away from us, taking his smiles and his rare but hilarious cackle, and tucking them in his tattered pockets and stealing them away for his own amusement?  I imagine that whatever it is - a gene microdeletion on chromosome 7, autism -  to be one of those black ghost-like things with no face.  Is that Death?  Is that the "face of Death" I'm thinking of?  I guess it is.  I wish I could imagine it differently but right now, I can't. It feels like Louie is growing; but smaller and smaller rather than taller and stronger.  A small, tiny boy.  I can barely see him, his stick legs and sweet upturned nose.  

I want him back.  Last night, Chris and I chose, printed, laminated, cut and Velcro'ed hundreds of PECS (Picture Exchange Communication System) and made a travel communication book. Choices of activities, toys, foods, a schedule.  A way for him to tell us what's inside.  A way to help him not slip completely into the abyss, the folds of that smokey black robe.  

Louie has used digital pictures in the past and it worked well. His teacher says he can recognize symbols now and we should be able to introduce PECS. Using PECS is easier because we can cut out the step of taking the digital picture and downloading them to the computer.  Some things are hard to photograph too.  PECS offers every situation, action, emotion and more all on one CD you stick in your computer and start printing.  

Maybe this all could be because I never see Louie anymore.  He's in school from 7:30 until 1:00, 5 days a week, naps when he gets home and then is up for 2 1/2 hours before he goes to bed for the night.  2 1/2 hours of which is spent doing the dinner, bath, bedtime thing.  And, furthermore, he cries pretty much the entire time. Especially if Ace says anything.  Anything. It's not enjoyable time.  

It could also be me watching the two of them parallel.  Side by side.  Brother to brother.  It's an awful comparison between a 13 month old and a 3 year old.  One typical.  One not.  A brother silently sinking away and a brother begging him to stay afloat.  

Ace has such a jolly spirit. His laugh is unlike any sound I've ever heard, a giggle coming from places like above the clouds or falling to earth on the hexagonal symmetry of a snowflake.  I love his two front teeth.  And his smooth baby belly.  And he is doing all of this incredible human development.  I can't get over it.  I know, I know, I talk about this all the time.  The awe in watching a genetically perfect being who is doing all of this feeling, seeing, pointing, this-is-a-crazy-crazy-I want-to-see-it-all-world thing!  Pregnancy, childbirth, all those "is this for real?" miracles I thankfully have experienced.

Ace doesn't give up and will do anything to get Louie to notice him.  Even if that means hair pulling or pushing Louie's walker.  He follows him everywhere.  Does everything he does.  Ace has a hero; a hero who gives him nothing and asks for nothing.  Not even a straight look in the eye.  Of course, as a mother, it hurts to see that.  We are thankful Ace can take the punches.  I think I need to take some lessons from a 13 month old.  

I have a feeling that Louie will always be Ace's hero.  Not for what Louie gave but for what Ace was able to receive.  That is my wish, my hope and prayer.  A prayer I lift high and throw from the rooftops and mountain peaks. A prayer bounded up tightly, safely, bouncing off canyon walls; sailing away on the soft sway of the sea just so it will come back around even more breath-taking, beyond what I could have even imagined to pray for.  And be answered.

So, here's what I'm grieving this time.  I'm grieving that I cannot look at Louie's baby pictures, especially the ones in the hospital, the one where I'm holding him for the first time in the NICU, proud and innocent.  Yes, that was still Louie.  But it wasn't Louie with WS or autism. The black robe guy is nowhere in those pictures.  That baby wasn't the Louie who would drown within himself.  

But it is the Louie that's about to be pulled out of a deep hole by his family.  We will take a rope, the strongest rope. We will train our muscles and our minds; increase our endurance.  We will all make him grasp on, and slowly, we know it will be slowly, he will emerge.  Right?  He will emerge?  

So, could it be that a snowflake is the perfect analogy for these brothers?  I just read that "the ice that forms snowflakes is a clear scattering of light that is illuminated by the crystal facets and hollows and imperfections which make snowflakes appear white in color.  There is a widely held belief that there are never two snowflakes exactly alike...In a more pragmatic sense, it's more likely that two snowflakes are virtually identical if their environments were similar enough, either because they grew very near one another, or simply by chance." - loosely quoted from Wikipedia.  I don't believe in chance.  I believe these two snowflakes, these two brothers will grow very near to one another and that the casting of their dark shadows will glisten with a halo of white. 

It is Well - Kind of.

I am completely blogocentric. At least I can admit it. A friend recently asked at "craft" night (not much crafting gets done), "So, are you going to tell us about whatever whatever or do we just need to read it on your blog?" She was so right! I have been referring people to my blog instead of just telling them myself! I mean, really, how lazy is that? Actually, it's just to build their suspense and what fun would it be for them to read if they'd already heard everything it says, right? Or is it better in person, the real person telling the story? Have I become too blog-headed to be able to tell the difference?

I'm borderline losing my bloggin' mind. Stuff like finding post-its written to myself from myself. I hold it close and examine it; I am baffled. What does this mean? What does it say? Google w/ H20 Haley? What the...? I look closer, think harder, trying to decipher the meaning. Who is H20 Haley? Then, I get it. Oh, right, it says "gargle with salt water. But with the word 'water' was written as H2O AND regular old 'water'." Of course that's what it means! Doesn't everyone need a post-it-note on their desk, reminding them to gargle when they have a sore throat?

Speaking of Google, my dear Internet search engine, would you agree it's almost like the 21st century crystal ball? A fortune teller in her brightly colored G-O-O-G-L-E lettering that sometimes morphs into random holiday or event themed lettering? Yesterday when Chris' neck was "out" or well, basically he couldn't move, I of course, Googled "stiff neck" like any good wife would do then proceeded to convince him that he had meningitis. You often hear, "don't get on the Internet, don't look it up, don't Google it." But what do we do? We Google it. It's ludicrous and yet it provides that immediate gratification. Of dangerous knowledge.

I am forever indebted to Google, as that is pretty much what led us to Louie's diagnosis. Sometimes, you big old Internet, you scare us pale. Nevertheless, you are loved. Just today I Googled "how to get poop out of carpet". Ace has had an ugly diaper rash so I thought it would be a good idea for him to air his chubby bum out on his way upstairs to the bath. He stops on the second step and as you probably have guessed, yes, he pooped. Any tips on removing poop stains from carpet would be greatly appreciated.

Poor Ace. He's had a rough time the past week. He was sick with a high fever, stomach stuff and sore throat. Better now but whiny and clingy yet clumsy and fearless. Not a great combo. Among the list of recent physical injuries: he pulled a side table over onto himself where Chris pulled him out from it and the red lamp that was piled on top it the table. The next day I heard a scream, THE scream that says "Don't pause, don't walk, get in here NOW!" scream. He had pulled a heavy dresser over. I found him beneath drawers and clothes and um...well...the whole dresser; this one scared me...with momentary thoughts of calling 911, but after a 45 second crying bit, off he went to explore more furniture. Then later, he tried to get in the tub while I was rinsing it out and ending up bonking the top of his head. He also drove his push toy straight out of the kitchen, rolled down three steps and landed on the concrete garage floor. I guess you're all probably wondering where I was. Well, I wasn't far. I was in close, close proximity. I promise. I hadn't run up the street to watch American Idol or anything, which isn't on right now anyway. These things, these accidents happen freaky fast. But at the same time slow....waiiiiitttt, noooooooooooo! Also, for some reason, Louie has a bruise around his eye. You know, you just know, that someone is suspecting abuse with all these facial bumps and bruises on BOTH children.

Ace has this obsession with putting things around his neck - pictured above with pink belt around neck. Oh yeah, and another picture of him "talking on his belt - or to him, at that moment, his phone. Anything is a phone these days. Which makes me think Chris and I talk on the phone way too much. Anyway, he doesn't wrap the stuff around his neck. He just carries it on his neck. A belt. A cord. A piece of yarn. A small blanket. A tie. A shirt. If it can go around his neck, then that's where it will go. Last night Ace got a rug-type burns on the back of his neck when trying to get one of those play telephones where the phone part connects by a string to the base, from around his neck. Chris asks me, "Is this normal?" I increduosly reply, "I don't know! How would I know? I am as new to this as you are. Do you think he might have 'put-things-around-neck' syndrome?" Anyone, anyone? Is this normal? I know nothing about normal. Especially when it comes to kids and "normal". Maybe this just means he's going to be really into wearing ties and scarves when he's older? Already accessorizing! Already a trendsetter for toddlers. Or do I call my pediatrician? "Um, yes, hello, I am calling because my son wears things around his neck and is in constant danger of choking." I often feel like a first time mom. What do the moms' of typical kids worry about?What are the big concerns? What are the games you're supposed to be playing with them. Because all I do is teach him all the "therapy goals": put puzzle together independently, stack rings or blocks, point at items in a book, shape sorters. Because I'm used to worrying about everything from kidneys to calcium to heart to words.

In a state of baffling aberration, I forgot about something big. Really big. My child. We have our pack and play set up in Louie's room with a bunch of those balls like you see in ball pits; the balls are great for giving Louie sensory input. So, one night at bedtime I turn on Louie's music and sound machine, shut the blinds, turn off the light...you know, creating bedtime atmosphere. I put Louie in his "ball pit" with a book to relax by fading daylight before getting in bed.

In the meantime, I ran to do something in my room. Then Chris calls me so I go downstairs to see what he wants. We eat dinner. We clean up. Mess around in the garage. Talk about our ten-year plan (ha!), argued about politics, you know, your typical evening at home. An hour or so later we went upstairs and heard Louie's shout. It wasn't a cry. He was M-A-D mad. He'd been in his ball pit the entire time; no longer fading daylight. Just complete darkness. For an hour or more! We don't have monitors because they are all broken and we didn't think we needed one right now. We thought we could hear them from downstairs. Apparently not. We also didn't expect I would leave Louie trapped in a ball pit (he can't climb out yet).

I'm sure, if he could talk, he would have said something like, come on mom, I like the balls and all but an hour in the dark, with only one book that I can't even see? No thank you! What the blog were you thinking? Put me in my appropriate sleeping area and don't let the door hit you on the way out!

This is really getting to be a long post. Maybe stop here and pick back up later.

The past few days I've been demolition gardening, for lack of a better name. The house we moved into had been vacant for about 6 months when we moved in so everything was overgrown. Demo gardening is about the most cathartic experience I've had in a long, long time.

One can take some fiercely pent up aggression out while demolition gardening (we'll call it D.G.). I highly recommend it. It sounds somewhat like torture. First, choose the hottest part of the day, because that's when your kids are sleeping. Don't forget your iPod, water, sheers, clippers, shovel, rope tree trimmer, rake, paper bags. And as you pull weeds and dig up plants with roots as long as Christmas lights you may enjoy cursing either the person who planted the random, ugly plant or the plant itself if you think it grew there spontaneously. Curse some more at the gnome (okay so there was no gnome but there may as well have been one), the bunny statues, plaques that say "Chipmunk Crossing" or "Mother's Garden" found beneath the overgrowth. Please, if you have these in your yard, I understand and respect that. They're just not for me. Right now. At this moment in my life. I may grow to love them one day which is why I am not throwing them away. Just saving them for the right moment when I feel I might need a 4 foot bunny in my yard. In the meantime, I sincerely, sincerely hope that chipmunks do cross your sidewalk and it brings you pleasure and joy.

D.G. gets the adrenaline going and it's no longer bothersome that sweat is burning my eyes. Then mulch. Here's a (un)helpful hint. Put your mulch as far, and I mean, as far away as possible from the site in which you are working. So then you can heave those 1.5 CU (42L) (??) bags over your shoulder about 12 times. Back and forth. Back and forth. Yell at the weeds some more. Get angry with the former owners, the people you've never met (but are probably the nicest people ever and here I am advocating cursing them!), who didn't plan this out better. Get as mad as you want. Sweat it all out! It's my new favorite type of gardening, if I must garden.

I bet the neighbors thought I was a hired gardener; mulching at the speed of light, (kids, might, huff, wake...up, any, can't breathe, minute, huff), pulling weeds with vigor. Tough enough to stand the midday heat. Tough enough to put my broken self back together. Yep, pretty sure people thought I was a professional landscaper. Not really but just let me hang on to that, okay? Some kind of strange end of summer, sweating, physical labor healing, I suppose.

My friend brought up brokenness the other day. I will generalize by saying that there is probably some brokenness present in all of us. Some breaks are deep, wide and hollow. Some are just cracks. The choices we have been given are to put the pieces back together or accept it for it's new shape. My last few blogs, maybe all of my blogs for that matter, have evidenced my brokenness. It's okay to break because we can usually put ourselves back together again. With time. And then the next time it happens, maybe we'll remember where the pieces go.

As I was going out to do some more D.G., a random thought came to mind. The words All is Well. A scripture? No. A song? Yes! Later, I Googled; the good ole' master information giver. The real title is It is Well with My Soul by Horatio Spafford, a hymn he wrote after a number of tragic events occurred in his life, including the loss of 4 of his children. I suppose this could sound strange, especially after writing about all my rage with the demo gardening. But after I read it, as I wiped a piece of mulch out of my eye, I decided it is well with my soul. For today, it is well. I felt a peace among the dead weeds, the unkempt landscape; the promise of new growth next spring.

When peace like a river, attendeth my way,

When sorrows like a sea billows roll;

Whatever my lot, Thou has taught me to say,

It is well, it is well, with my soul.

- Horatio Spafford

Hot-Wheeling in Holland or Wherever We Are.

I came across this quote I had scribbled on a piece of newspaper but I can't seem to find where I found it or who it's written by.  I wish I could say I wrote it myself, but I didn't.  I Googled and Googled and found nothing.  If anyone knows, please advise.  

"...thankful for these walls.  These walls that contain my unpredictable, crazy, sometimes messy, lovely life."  

As you may have noticed, many of my posts contain within or end, with my desperate attempts to find the lovely parts of life.  Just so you know, I'm not this positive person always looking on the bright side of things.  In fact, many times I'm quite the opposite, clinging to a string of hope I hold loosely in my sweaty hands.  Trying to shed a coat of bitterness I wear year-round.  I'm always trying to make sure that no one thinks I'm feeling sorry for myself.  And I don't want others to feel sorry for me.  

As Penny, fellow blogger with a son who has the same dual diagnosis of Williams Syndrome and autism that Louie has, commented on my last post, we just don't know where the WS stops and the autism begins.  I am in the process of preparing myself for the possibility Louie will never talk.  I had a dream he spoke last night.  Don't remember much of it.  Don't know what he said.  Just that he spoke. Leaving me today with a formidable, raw feeling of hope and dread and awe and realization.  

Most parents who have a child with special needs have read the poem Welcome to Holland, an apt metaphor.  But I'm not in Holland.  I know the name of Holland.  I'm pretty sure I could locate it on the map.  In the very least, I could find the coordinates.  My family has been uprooted and placed somewhere far, far away from coordinates.  The land where those people live that you spend most of your life thinking, oh that only happens to other people.  Until it goes and happens to you.  Special needs? Huh? Williams Syndrome?  What? Who?  Who is William?  Autism?  Mentally what?  

I don't know this terrain; I am not familiar with its climate.  I'm lost and there is no map. I don't know the rules and they're not posted anywhere.  I have no idea if this place will mend my soul or shrink it and shrivel it to the size of a raisin.  I hope not.  I think that's up to me. Because the one thing I do know about where I live now is that we are at war here.  At war with ourselves.  An odd war, because you're fighting to find the fight within you; enough to fight for yourself and your child.  To navigate the turns and bandage your wounds.  And somehow surrender to or conquer the Battle of Shock and Darkness.  You know many who live here. Sometimes I wonder if it's not a faraway place after all; not Holland, not Italy.  Or the United States.  Just here.  In the world.  In which we live.

Speaking of battles, we had one with Louie a few weekends ago.  After a year with that walker, Louie decided he would use it.  Use it and abuse it.  Rockin' and rollin', hot-wheeling around, turning on a dime, backing up, maneuvering corners.  You get it. The kid knows how it works and uses it everyday to walk into and out of school.  On grass, pine bark, whatever; his own gold-plated ATV.  Like I said, he's mastered it.  

Big test...a public place.  An errand.  We chose Office Depot for its small customer size, wide aisles and because we only had one or two things to get.  Quick trip.  Chris takes Ace off to get aforementioned items while I cruise the aisles with Louie.  Doing well.  A little distracted by the automatic opening and closing doors.  Moving on.  He stops and looks at highlighters.  Further down, he is drawn to some shiny display of leather planners.  Then, for whatever reason, he decides he done walking.  Drops to his knees and starts the "eeeeeeeeeeee" cry.  You can't see it in the above photo, but there is a belt and so he was strapped in and couldn't get out.  He could only, as he did, fall to his knees and cry in protest.

Okay, this is where you may not understand what I did.  Much we do as parents, special needs or not, disciplining, teaching, etc., can be done in a vastly different number of ways.  A method that works well with children with autism and a method we practice often is based on some of the principles of ABA, or behavioral therapy.  Ignore the undesired actions; praise the desired actions.  So, I walk away.  I can still see him obviously but I pretend to be looking at file folders. I had to win this one.  If I let him out of his walker and carried him, it was he who took the gold (sorry, the Olympics having just been on and all).  

We have to stop just to laugh.  I can do this now.  Now that it's over.  Okay, so one thing we didn't consider was that this was the before school tax-free weekend.  Everywhere that sold stuff was busy.  Even Office Depot.  Can you imagine what people are thinking when they see this whole scenario?  This poor child strapped in a walker, on his knees, crying and pleading wit his eyes to unleash him from the metal torture device.  And here, I, the mother, have walked away?  

Chris told the story to someone the other day and noticed a part of the story that I'd already repressed.  How I loudly announced to everyone checking out that Louie was perfectly capable of walking in his walker and this was his first outing to a store and I had to win this battle.  But, you should know, that as I was saying this, I was WALKING out with Louie, still crying, but nevertheless, walking in his walker.  We have since been to a number of other stores and restaurants and he has been walking in his walker, independently and almost, maybe, with a sense of pride?  

Whoever "they" are, again, I quote another nameless author, they say that life is the toughest teacher for it makes us take the test first and then teaches us the lesson.  I can buy that for now. I can wait for my lessons.  I just hope I'm not graded too harshly on the tests.  

Vowels and Consonants

My mom left today after a four day visit and emailed when she returned home. She commented "Louie makes my heart hurt if that makes sense. It's the only way to describe him right now." I understand exactly what she meant. It's the same way I'm feeling right now. My heart just hurts for him. For me. For his grandparents.

You know, the funny thing about Williams syndrome, which really isn't funny at all. Why do we use such stupid language sometimes? Anyway, the not so funny thing about Williams Syndrome is that I'd never heard of it. Ever. So, when Louie was diagnosed, I could make it whatever I wanted it to be. Oh, here on the Internet, it says mild to moderate retardation, so of course I deemed that Louie would be the "mild" case. Many kids with Williams Syndrome are musically gifted. I envisioned Louie playing with the Philharmonic or touring the world singing in 100 different languages. I read children with WS were extremely extroverted, conversational and friendly and loved people. I imagined Louie making friends at every corner; the adored child.

Okay, so it's not turning out that way so far. I know, I know, there's still time. But he doesn't fit the Williams syndrome profile. One of his doctors labeled him as "low-functioning". He is not friendly. He's not showing any musical talent. He doesn't speak a single word or even attempt words. He babbles, 'a' and 'e' and even that is rare. Who would have ever thought vowels and consonants would mean so much to me? His speech therapist sent home a note this week saying she heard the sound "muh." Do I celebrate? Yes, I suppose I do.

Louie has a dual diagnosis. He has both Williams syndrome and autism. Point here is not poor me, as much as I realize it may sound. The point is that every moment, I'm learning more about what it means to be the mother of Louie. And who he really is. And it doesn't matter how many labels we put on him and how much I read about these labels. He'll still be Louie. But a Louie that tugs a little harder on my metaphorical, yet vulnerable heart.

I create all these expectations about what he should be like, according to the things I read, the doctors I talk to, the WS website. And then I find myself left with that feeling similar to the day of the diagnosis - not the "oh this could be anything I want it to be" part, but the wave of nauseous realization that this is what's happening. The reality part. Since Williams syndrome is rare, I wonder if my grieving process is taking longer? Since I had nothing to go by, nothing to compare it to? No knowledge of what I was facing and all the knowledge I have gathered has turned out not to apply to Louie.

I will continue to learn more about who he is and what he needs and stop reading about what he "should be". I will learn more about how he is not words on a page; he is the person sitting on the floor stimming out on a Crawl Ball - cause and effect toy. His current obsession. Cause and effect.

These are tough times with Louie. And as Ace reaches every milestone it's such bitter sweetness; or maybe it's a full-blown-elbow-jab in the ribs. Wow, this is the way a human develops. This is absolutely amazing. Chris and I watch in amazement, saying "Louie is just now doing that" or "Do you remember how long it took Louie to figure out the ball tower?" Ace has now surpassed Louie. We knew it would happen. Ace is beginning to walk and talk. Words! Real words! I need to call Mensa International right away.

So, Williams Syndrome isn't everything I thought it was going to be. Is anything? Hasn't everyone been disappointed by imagining something in the future and it turns out to be nothing like what you thought it was going to be? I'll answer for you. Yes. But haven't there also been those moments, those that you least expected that were amazing? The ones that aren't planned, the wet kisses from my boys, the full moon rising on the horizon, a brief but meaningful moment with a friend, sometimes just to let them know, "Yes, I'm still alive and I still love you." Camping on the beach cause you were too young to a.) afford a hotel, b.) think about and become frighted regarding the safety, c.) sitting on a lifeguard stand late at night, feeling the salty wind, watching the waves and the black water that went on forever and ever. d

We all struggle with the disappointments, unwelcome surprises and hurtful situations in life. We should own our pain and not feel guilty about it. Rachelle, breast-cancer survivor from my book club, said it perfectly the other day. "It's like if your whole hand gets slammed in the car door, it hurts. If your pinky gets slammed in the car door, it hurts." Doesn't matter what your hurt is or the cause. It still hurts. And that's okay. We are the ones who live with that hurt no matter how big or small we think it is. It's ours and we feel it and that's really all that matters. You have to feel it to get beyond it. But we can't lose ourselves so much in our pain that we miss out on those deliciously, hilarious moments that make you laugh until your side hurts or the appreciation of a sleeping baby; a sight that takes my breath away every time I see it. Sometimes we do, though, have to lift the covers in order to see these thing too. You know, go ahead and get out of bed.

My Dear Friends, I Thank You.

Hello Dear Blogger Friends, 

I don't believe I have told you lately, or ever, actually, how much I love reading your comments. And all your funny stories that make me laugh so hard.  And all the support I get from all of you.  I wish I weren't writing this mass thank-you but it's the only way to reach many of you. I just want to take a moment to acknowledge you and voice my appreciation for your friendship and support. Soon, I will be back to keeping up with your blogs as well.  As you know, it's been a crazy, crazy July.  To July, I bid you adieu and will see you again next year.  

I know, you can't hear any more about me moving.  I can't talk about it any more either.  I just keep hoping for some "ahhh...everything is done and unpacked and hung up and filed" moment. Okay, here I am talking about it.

Let's discuss something much more interesting.  I bought a waterpik over 3 months ago.  My dentist said it was imperative that I use it everyday with this specific solution I mix at home to try managing some kind of gum gap thing that's going on.  I haven't done it.  Nope, not once.  But it hangs over my head.  Every single day.  "I should waterpik, I should waterpik, I should waterpik."  It's become my mantra.  And every day I see that stupid 2 liter ginger ale bottle sitting empty, thrown carelessly to the bottom of the bathroom cabinet. The one I bought specifically for mixing my special waterpik solution.  It just lies there like trash, saying "You should waterpik, you should waterpik, come on, just mix the solution at the very least."  The only time I even touched the dumb gadget I ended up breaking the glass pik part and had to super glue it back together. Wow, it was good to get that out.  I'll keep you posted.  I know you will all check my blog many times throughout the day to see if I've updated regarding this matter.  

Anyway, I just want to hug you all, near and far, friends I've known forever, friends that live close and far, friends that I've never even met in person. Blogging has been so good for me. Obviously it's my therapy.  Clearly, I should probably invest in some real therapy some day.  But for now, this is working and much of it is because of all of you.  Thanks, guys.  

More Self-Indulgent Complaining and Some Funny Stuff Too.

Ok, so the boys are in bed.  I can hear Louie's "Pure Relaxation", or whatever zen music a 3-year-old- with-William-Syndrome is in to, drifting from his room.  He goes to bed listening to it every night.  Sometimes he just lies beside his CD player, presses play and sucks on a pacifier (he doesn't use them during the day, supposedly) he had stashed for these moments.  He turns it up too loud, well, too loud is an understatement.  He turns it up as high as it will go and I have to rush in and say "Turn that 'Pure Relaxation' down right now!  You're going to wake your brother!"

Chris is out fishing.  I'm having Sprite and popcorn for dinner.  Everything is starting to come together with the move.  Everything except my "office" and my clothes.  Once these two things are in order I think I'll feel much more in control.  

I've been in the "nervous breakdown" type mode.  Again, as I mentioned in my last post, I'm not sure what that means exactly but it sure sounds like something I'm having.  Just the move and the trip to visit the in-laws and the surgery (though it was minor) and then the in-laws trip to our house (keep in mind, this is only 2 weeks after our trip to see them).  And then the unpacking and the whole subdivision thing - which I both love and hate.  People sure exercise a lot here.  And that!  I should put that exercise thing on my to-do list!  

I'm also feeling a lot of guilt about this last visit with my in-laws.  Bonnie, Chris' mom, and I are oil and water.  Or is it oil and vinegar?  I like oil and vinegar so it must be oil and water.  They were here Thursday night until Monday morning.  Chris and his dad worked on house stuff, such as installing a trash compactor and an ice machine.  I'm not talking about an ice maker, like the one in your freezer and the ice comes out the spout on the front of the fridge. I'm talking a full size, like say, trash compactor size, piece of equipment that fits into the counter space.  You actually loose a cabinet for the ice machine.  It holds around, oh maybe, a TON of ice. This is a big thing in Chris' family.  This ice.  All of them have one.  It's a MUST-HAVE. Chris' parents have two at their lake house.  One upstairs and one downstairs on the screened-in-porch.  I don't know, maybe this is totally normal and I'm the weird one.  I just don't see how having that much ice is going to benefit anyone.  It makes me feel really over-indulgent and guilty.  I know.  I've got some issues.  But those go way back and will have to be discussed later.  Preview - outhouses, the wooden end of a broom banging on the ceiling if showers were lasting too long - and we had to turn off the water between getting wet, soaping up and rinsing off.) 

Anyway, so this left a lot of time for Bonnie and me to "spend time together".  I will preface this by saying she has a good heart.  And I know her intentions are good.  But she is no fun.  And I'm fun-loving (really, I usually am!). She worries about wax on lemons (putting them in your water), about grease or "sticky" on just about anything and everything.  She follows me around with a mop.  She is OCD clean, perfectly pressed, perfect-white-pants person.  And I am so, so not that.  I kind of secretly wish I were sometimes, though.  

One morning,  I was sitting on the floor in the hall outside the bathroom, opening a box of keepsake type things from when the children were born and she was putting on her make-up.  

I say "I sort of get sad when I think back on Louie's birth. That time until the diagnosis was the darkest period of my life."

She says, "We knew.  We knew something was wrong and we kept 'throwing you fleeces' (I have no idea what that means; she's been known to make up sayings like this) but y'all never bit." She said that about three times.  The fleece/biting thing.  I have some hearing loss in my left ear so maybe I didn't hear her right?  Does anyone know any sayings that sound kind of like that?  

Anyway, I say, "We knew something was wrong too.  We switched pediatricians three times trying to find answers.  We followed protocol for what you do in these situations."

She says, "I'm just saying like at 6 weeks, when he was 6-weeks-old you should have been doing testing."

I say, "You can't just spend tens of thousands of dollars doing tests for the millions of genetic disorders in the world."  I think I said that.  I hope I said that.  Then I got up and walked downstairs.  

She says, "Where'd you go?" as I was walking away.  

I tell her, "Gotta get more coffee."  That really got to me.  Bad conversation.  You never want to be told that you should have been doing more for your child than what you did.  We thought we were doing everything we could for him.  

And then there's the do we have one more child question that's been hanging around lately.  I just turned 35.  I want to get the young ages behind me quickly so I'm okay with having kids close in age.  My doctor said now versus December wouldn't make a difference but if we're talking now and a few years from now, he'd definitely recommend sooner rather than later. Not that later wasn't possible.  

I have enjoyed this typical parenting experience with Ace.  I do not love Ace more.  I just have loved having this typically developing, milestone-hitting child.  I would love to experience it again.  It would be hard having three and especially with one having special needs.  But I can't help but to feel someone is missing.  That's what my heart says.  Chris' heart doesn't say anything, on the other hand.  But his brain says a lot, like, "what if we have another with special needs, what about all the time it takes with a newborn, what about money, what about how horrible you are during the gestation period?"  My brain says all those same things too.  

So, I had an OB/Gyn appointment today.  It was just your standard check-it-all-out appointment.   Unfortunately for everyone, I had both boys with me.  Louie has been home from school since he's had the stomach flu and my babysitter wasn't available.  It takes Dr. Black more than 30 minutes to get to me.  Louie and Ace were strapped in their stroller with all kinds of toys and snacks.  This worked.  For a while.  And then it didn't.  It so didn't work.   I let them out of their stroller.  They're still crying and whining but at least a little less as they begin to "explore" the room.  Ace starts eating all the snacks that had been dropped on the floor.  Dr. Black comes in and I profusely apologize for the food and the toys and the shoes strewn about and all the crying.  He was kind and understanding.  Then Louie goes over to the black and silver trashcan.  The one with a lid.  And starts opening it.  Dr. Black tells him not to do that and then looks at me and says "I just don't want him to get someones blood on him."  Yeah, me neither.  Thanks.  Seriously, thanks.  

Finally (as in OMG, I've been here forever - don't get me wrong), I'm in the stir-ups.  In the middle of the examination, gloves, long q-tips, plastic bottles and all, Ace starts screaming.  I don't use the word 'screaming' lightly. I look down to see that they had gotten in my purse and found my cinnamon Altoids, opened them and they were all over the floor. Ace had one in his mouth.  Those things are hot, you know?  Dr. Black is between my legs so I scream "He's got an Altoid in his mouth!!!"  The nurse runs over and gets my sweet little one-year-old (today's his birthday) and saves him from the Altoids.  I'm sure my visit will be remembered fondly by each and every staff member. 

Just wanted to update you all on what's been going on.   I've missed blogging and missed reading all of your blogs.  Getting back into the swing of things though.  Slowly.  Getting there.  

By the way:

Happy Birthday, my little Ace.  One year ago today you were swaddled in my arms.  We had just met a few hours ago. And I was in love.    

 

Looking Up. Or at Least Putting it on My To-Do List.

Do you ever look up?  I mean really sit down and look up at the sky?  I just did that and in doing so realized I never do it and it's nice.  It relaxes some muscle in your eye that never ever gets any reprieve.  No rest for that bottom eye muscle.  Just work, work and no play.  Looking forward.  Looking down.  Looking in our rear view mirrors.  But when is there ever a time to look up?  Just to look at the sky and the tops of the trees glowing in the yellow of the setting sun? Just to look at an individual leaf?  Lovely.  Lovely, I say.  However, my moment was not all that tranquil since the neighbor's (who appear to be having a patio built or something) workers are still there, even though it's almost 8:00 p.m., with the jigsaws, jigging or sawing or whatever.  

So, I've been absent lately.  From blogging.  But very much present in the middle of a big pile of craziness I call my life.  Let's start with the packing.  We packed our old house up bit by bit so when we returned from vacation, we could pretty much be packed and ready to move.  Good idea.  Not really accomplished, though.  

Okay, so the vacation.  Beautiful town (Fairhope, AL), wonderful being all together, quaint bicycle rides along the boardwalk by the bay.  But more packing.  A bag for the pool.   Pack a bag to go out to eat.  Pack a bag to go to the beach.  Then, there's the rest of the trip. Remove kids' clothes.  Apply sunscreen covering the bodies of two 20-some-pounders - with one recipient making it extra challenging by thrashing about like those stupid bass my husband is in love with.  Put on swim diaper, swim suit.  Don't forget, pack a bag.  Swim.  Back to room. Remove swim diaper and suit.  Put clothes back on.  Pack another bag.  Take off more clothes. Eat.  Pajamas.  Pack a bag.

Louie recently started his first day of public school.  I expected it to be a little sad.  Maybe a misty-teary-type moment or two.  I did not expect a full on melt down.  That's me; not Louie. Me.  Completely freaking MELTING-like-lava down.  Louie is in a self-contained classroom. All of the children in his class have autism. We'll discuss this on some other post.  I know self-contained vs. inclusive classrooms for children with special needs is a controversial topic among educators and parents alike.  

Louie's school has a balanced calendar and the longest break is June and July when they are out for six weeks.  During this six week break the teacher holds two weeks of class (shortened school day).  The extra weeks work out to be every two weeks during the break so that the kids aren't out of school for more than a two week period of time, as children with autism need routine and can quickly regress without constant interaction, guidance and instruction.  

Louie's first day was the first week back from the regular school year, during one of these "extra" school weeks.  In the interim, between the regular and "extra" school week, the classroom was moved down the hall to a bigger room. As you may or may not know, children with autism don't like change.  At all.  So here they had been out for two weeks and then when they returned, everything had changed.  Not happy. Lots of stimming behaviors, lots of repeating phrases and words, lots of just plain losing it.  Every kid was in full on "I HAVE AUTISM" mode.  I thought to myself, "This is not the place for Louie.  This is wrong, wrong. All wrong!" ("Hello, Denial.  Where have you been lately?"). Everyone, all the kids, Ace, me - everyone was crying.  Except Louie.  He was fine.  Thank God. Seriously, thank God.  If he would have been crying too I'm pretty sure I would have taken him and ran far and fast. Instead, I just grabbed Ace and ran to my car, both of us crying like babies; at least he had an excuse being a baby and all.  So I drove home sobbing and messy crying and my whole stomach just convulsed from it all.  I'm telling you...this was a major freak out.  

But, alas, there is good news.  When I picked him up that afternoon, he proudly walked out in his walker (this is big deal), smiling, the happiest kid ever.  He used to lose it when I showed up to get him at preschool. Just cried and clapped for "more" when he saw me until I picked him up.  He doesn't do that here.  It's totally and completely where he needs to be.  He's already made a ton of progress.  It's his place.  They have visual supports everywhere in the classroom.  It's structured with a ton of teacher support.  He's in his element.  His element. Not mine.  I understand that now.  

Okay, so then there was my appendectomy.  That's a boring story.  It just happened one night at 4:00 a.m.  There was only one memorable moment and it was right before I was about to go to surgery.  Chris wasn't able to be at the hospital with me since someone had to be with our kids, right?  He and Ace came up for a minute and was able to talk to me right before I went in (Under? The knife? Whatever. Yuck.); I guess to say hello/goodbye in case I kicked the bucket during surgery. Then he left to go pick up Louie from school.  And there I was alone on that white railed bed with curtains on each side and other patients on either side of those curtains.  Here's where it gets blurry.  Oh morphine, you silly, silly, where-have-you-been-all-my life drug.  Just kidding.  That morphine.  Isn't it just awful?  Anyway, the anesthesiologist (I'm pretty sure that's who he said he was) came to talk to me and sat down by my bed.  I told him I was afraid. He said he understood.  His kindness was reassuring. Or maybe it was the drugs because right after that they said my name and it was over.  Is that a bizarre feeling or what?  There ya have it.  Appendectomy.  Check.  

Oh yeah and it has to be said that I thought I was going to die the next day when I had some kind of delayed reaction to the anesthesia and threw up every 15 minutes for 5 hours.  Keep in mind this whole time we're trying to figure out when we're closing on our house, still packing and all that.  Well, I say "we" but really it was just Chris since my head was in a trash can.  He was taking care of the kids, me, trying to check in with work intermittently, all the house stuff.  It was a lot for him all at once.  He came in during the middle of my puking my organs out and said "I'm about to have a nervous break-down." (P.S. Seriously, what is a nervous break-down because just judging by the name I would say I have one of those about every day.)  Anyway, I just remember trying to talk and reassure him but all I could do was move my mouth.  No sound.  Okay, so really, that's the end of that story.

We've moved into our new house.  I'm not going to bore you with all the gory details.  But I did realize during all of this is that moving is one of those things in life that you just simply forget how very bad it is.  And then when your friends complain to you when they're moving you just kind of tune them out and mumble something like, "Mmmm...that stinks for you.  Sorry."  Kind of like how you do when people tell you their dreams.  Except I like to hear Chris' dreams. They are interesting to me.  Speaking of dreams, I have to tell you (I know, I know), the other night I had a dream that Ronald Reagan bought me a portion-sized box of that cereal Pops.  It was 10 cents.  He got one too but he didn't have to pay for his because he worked for the government. And this all took place in the convenience store next to my elementary school.  Hmmm.  I don't know what to tell you about all that.  Oh yeah, we got milk too.  A small pint-size.  

I feel like I have so much more to tell you.  But as you can see in the pictures, I just simply can't live like this anymore.  This chaos.  This asking "where's that ointment for Louie's rash?"  "Hey, Jenny, do you know where the meat strainer thing is?"  "Have you seen the nail clippers?"  It's got to end!  It's true as with anything in life.  Some people are better at things than others.  Some are better movers than others.  I've come to realize I'm not so good.  I thought I was organized; that I'd labeled each box with such specifics.  How could I have been so wrong?  So very, very wrong?  I have a friend who I witnessed, who I saw with my own two amazed eyes, move in to her new house in the morning and was serving chili to a crowd by evening; kitchen completely organized and put away.  She's good that way though.  

Well, I'm off to get organized.  Find some order.  Put away some clothes.  Consolidate my to-do list. But I'm also going to try looking up more often.  At the sky and the trees and the birds. You know, exercise that bottom of the eye muscle.  And not let all the moving and school and the packing of bags make me forget about occasionally just looking up.  There's cool stuff up there.  

I'm Supposed to be Packing but Instead I'm Blogging.

Lately I've been fumbling between rushing around and lazily procrastinating. I'm sorry to the mommies I stood impatiently behind yesterday during a "rushing around" moment.  Just inside the doors of Kroger, you both blocked me while you frantically wiped down your carts and kids with disinfectant wipes.  Yes, that was me rolling my eyes, shifting my weight from one foot to the other in hurried exasperation, heavy sighing.  Yes, that was me, the rebel mom who didn't use the wipes, who just wanted to blow through Kroger in 5 minutes or less to get the necessities - milk, juice, Three Musketeers new dark chocolate mint mini's.  I'm sorry, okay?  I let you down.  I didn't support your caring, responsible, germ-free ways.  

I'm afraid I have a false sense of security about how much packing I've done.  Just because the pictures have been taken off the walls it feels like a lot more has been done than what I know to be true.  It's behind the cabinets, inside the closets, under the bed; those are the places that get you.  And overwhelm you.  At least, so far, this is one of the most organized moves I have ever participated in.  Even Chris is on board.  Last night he brought up some vacuum bags to put with the other vacuum bags so they would all be together.  That's HUGE!  Instead of just stuffing those found bags in a random box, he brought them upstairs so that they could all be in one place.  My heart swelled with pride and skipped with joy.   

We all the supplies.  Lots of empty boxes.  Tape. Markers for labeling.  Lots of newspapers for wrapping.  I stare at them.  I carry them to another room.  I rearrange the empty boxes.  I decide I have more important things to do.  For example, going through my phone and assigning various ring tones to my contacts.  Sonar for Chris.  Crickets for my dad.  Sci-fi for my mother-in-law.  This is very important work.  A task that just must be done.  And of course, blogging about procrastination.  Isn't that like the pinnacle of procrastination? 

Sitting outside this morning, enjoying my coffee (procrastinating...I never sit outside to drink coffee), I thought about this house and all the things I will miss.  There is an elementary school behind our house.  Prospective buyers often asked us how loud it was and if the noise bothered us.  The answer, which I only just thought of, is if the sound of children playing is bothersome to you, then yes, you might consider it loud.  But you can only hear them if you're outside and to me, it's quite a lovely sound.  Children at play. 

When we bought this house it had been a rental.  It had not been loved.  We painted its dirty walls.  Uncovered hardwood floors under layer upon layer of vinyl and linoleum.  We put tile on the counter tops, installed new hardware, put up blinds and curtains, gave it a new roof and covered the old chalky aluminum siding with a nice taupe.  We planted azaleas and monkey grass.  We hung a flag and trimmed the trees.  We loved it like a house should be loved and it became a home.  

These walls have seen so much joy and so much heartbreak.  We brought baby Ace home to this house.  We celebrated Louie's first birthday here.  And, of course, that night we sat on the back steps, crumpled heaps of brokenness after receiving Louie's diagnosis. We've come a long way since that night.  A lot of grieving and a lot of healing has taken place.  There is one thing I will be leaving this house with that I didn't have before (besides Ace) and that is an anchor in the present.  The reason for this change, for this new in-the-moment me, you might assume is that I've had some epiphany or inspiration; that spiritually I've reached new ground.  But it's not that.  Actually, it's pretty much fear-based.  The reason is that the future is a scary place to go now.  So I don't visit it as often.  And I just became cognizant of this last night...that I no longer tell myself that worn out line, "Well, when this happens or that happens, then I'll be happy." I'm just happy today.  And that's really nice.  It's a gift and I'll take it. I will take that anchor and cling to it.  

A Love Letter

My Dearest One Way Sign, 

Well, the verdict is in.  Just as we suspected.  I overheard the P-Units talking last night and we are in fact moving.  They've been saving all my diaper boxes; the Portable On Demand Storage unit sits coldly in the driveway; I've overheard the many phone calls with the realtor. But I've been in denial.  Until last night when it became plain and clear.  I can't ignore the signs (excuse the pun) anymore.  They are rushing around, actually putting stuff  in the diaper boxes, sorting through things for a garage sale, and generally running around like parents who have to move their entire house the week after they return from vacation.  Good times.  Good times.  

Anyway, get this.  We're moving to a subdivision.  Seriously.  A subdivision.  I don't understand them and they're American consumption mindset.  Especially during a recession.  They say they want more space, more closets, more this, more that.  What they don't seem to be considering here is what this is going to do to you and me.  I simply can't bear the thought of leaving you.  Alone at the end of the street with only strangers nearby.  

I know, I know.  I understand that you can't leave Battle Avenue.  And that you are needed to direct drivers to not drive in both directions on your street.  Your job is important.  You save lives.  I get it.  Let's try looking on the bright side - my parents have friends who live in the neighborhood so I'm thinking that I will at least get to visit on occasion.  It's not like I get to see you all that much as it is.  Just so you know, I give them the picture of you all the time.  That's how I "ask" to go see you.  Many times they dismiss me and say "Not right now."  "Well, then when?" I ask.  "When?"  

My parents think they're doing me a favor by allowing me to see you once, maybe twice, a day.  And when they finally do take me to see you, then they set that stupid timer for 3 minutes and then make me leave when it goes off.  You know what I'm talking about...you've seen it firsthand.  Do they really think 3 minutes is long enough for us to be together?  Don't they see my agony when they rip me away from you?  Don't they see the pain they cause?  They simply don't understand me or our relationship.  

I have to admit, I was wooed by a handicapped sign the other day.  But quite honestly, it did nothing for me in the end.  It was too small and I don't care for the blue color with white lettering.  It's nothing compared to your bold black block letters set strikingly against the chalky bone white.  Your steely strong body.  The way you say the same thing on both sides. You amaze me.  Your beauty is undeniable.  You always make me smile.  In fact, I smile the minute I set foot on the sidewalk and I can see you standing strong in the distance.  When I finally get my hands on you, I find it so very hard to let go.  I just simply want to hold you and look up at your beautifully delightful black and white face.  

Please know, it's not my choice to move.   I don't want to.   I will think of you often.  You are my one true love.  And you always will be. 

S.W.A.K.  

Yours Truly and Forever, 

Louie

Louie

-n-

One Way

4-Ever

Hello Summertime. I've Missed You.

It's not officially summer but it certainly feels that way.  This all began a few days ago when the humidity made its heavy way to Tennessee and settled in for sticky, bug-biting, lovely long summer days.  

I do love the seasons.  I love how perfectly and strangely and distinctly different they are.  This is something I have come to appreciate more and more.  Except spring.  Spring is a huge transition for me.  Coming out of the winter gray into chirpy green and blue days.  It's just too much.  My pasty skin practically blinding in the tell-all light of spring.  Then the time change comes along and messes practically everything up; your kids' sleeping, your own sleeping, light.  Suddenly there's too much light.  Wait, what am I supposed to do with all this daytime? Getting cozy on the couch with popcorn and the remote seems wrong.  Lazy.  I should be outside...pulling weeds or some other spring-like task. Spring requires too much.  Okay, like I said, I'm in the process of appreciating all the seasons.  

It's sticky and hot and Friday.  It's a good day.  We had a follow up meeting with the school yesterday.  It went well and I feel like we came to a fair compromise.  But today I feel like everything has been completely drained out of me.  Sucked out of every pore.  I guess I was running on adrenaline.  For more than a week, it kept me going.  Fighting for your kid requires a mental strength that you don't even know you possess.  But you do and you always have.  Ever since you became a mom.  I think it is a gift we are given with the birth of a child.   Superhuman mommy strength!

I'm so glad the meeting went well but I feel as if  I've been studying for a big test and it's finally over.  I've taken it.  Now I don't want to see the book; I don't want to see the teacher.  I don't even want to be happy that it's over because that would involve me thinking about it.  Right now I can't think of it.  I can't talk about it.  

I'm glad it's summer.  Pre-summer summer.  Carefree and flip-floppin'.  Summer always reminds me of orange sherbet.  Whenever we visited my grandparents in the summer we got orange sherbet after dinner.  More exciting than you even know.  Anyway, summer also reminds me of the whippoorwills of my childhood.  The sherbet was the city treat.  The whippoorwills were every night of my youth.  Their long hauntingly beautiful calls, their timing perfect, as twilight turns to the fallen night.  

I'll get on with enjoying the summer and doing summer-like activities.  But right now I'm diffusing.  My fight-or-flight-reaction was strong but now I am weak.  Excuse me while I go get cozy on the couch with popcorn and junior mints.  Even while daylight still exists.  It's dark somewhere.  

Baldy

Chris has had some time off work.  Not to go anywhere, just to use up vacation days.  After the first day or so beyond the length of time he would normally be home, it becomes a little awkward.  It's like we're in some sort of family time capsule where there is no day of the week. "Today is Monday? No, wait, it's Tuesday."  We start to overlap each other on duties and then end up not doing them at all.  "Did you give Louie his medicine this morning?"  No.  The answer is no.  No one gave him his medicine. It's similar to those dreams you have where you wonder if maybe it wasn't a dream at all because it was so normal. Like a dream about running errands, getting your oil changed,  going to the cleaners.  

This time with Chris lurking around the house begins in a haze of confusion but ends with that day-after-Christmas feeling when he goes back. We finally get in the flow and start operating as a team; one of us cooks while the other bathes the boys;  Chris folds the laundry and I put it away; I clean up the toys while Chris pours Louie's milk; we go out to lunch; play in the backyard.  We're grooving.  A finely-oiled family machine.  Conversation increases in both frequency and quality. We have time to discuss the nuances of day beds versus pullout couches. I tell him about a woman I overheard talking loudly on her cell phone in Target about how her insurance won't cover her hysterectomy (is nothing private? Nothing?).  Anyway, point is, we have had a lot more time for both meaningful and silly conversation.  It's been nice.  

During one of his days off he got a haircut.  The salon is fairly open so the customers and stylists are all crammed together.  A fifteen-year-old with hair to her waist sat next to him with two or three stylists working together to try to comb out the massive head of  hair.  Chris commented "Looks like you've got some dreads going on there."  She looked at him and said "Whatever, baldy."  As in "You are a balding-thirty-something-man who needs to mind his own business."  Poor Chris.  As if this isn't something he already worries about.  

And so this sparks a conversation between us about the insults we endured as kids.  "Kids called me egghead...man, that stuff sticks with you, " he tells me.  I try to relate but have a hard time.  Either I've completely blocked it all out or it didn't happen to me.  Not because I was super popular or anything but just because my school was small, redneck, rural and poor and we were all pretty much in the same boat.  The only thing I can recall is in middle school when my friends made fun of me because my butt wiggled when I walked.  So I tried my best to walk so that my butt would not move at all.  Difficult.  Very, very difficult.  "Is that all you got?  I've been hearing about that butt thing for years."  It's all I got.  Sorry.  

Which led us to the "I want to keep my child locked in his room forever" conversation.  Every parent has had this thought at one time or another.   This feeling, this innate quality we have as parents, is full of so much pain and so much pure and simple love.  Protection.  We want to protect them from the hurt that we experienced.  From the hurt that we know they may experience because of the way they walk, the clothes they wear - or don't, the shape of their beautiful, oblong head.  Kids can be mean to one another.  They pick out the most permanent detail to exploit, the detail the child can't change like the color of their skin, the way they talk, the size of their nose.  

But I try to tell myself and Chris, that there are also the children who are kind.  Who you lie next to at sleep-overs and giggle until the sun rises.  There are the kids who share their lunch, who help you with math problems, who hold you tightly when your first love breaks your heart. And who wants to miss out on those kids? 

Chris goes back to work tomorrow.  He's out fishing now.  Enjoying the sunset, calm waters and the first fireflies of the year.  He needs that time.  That perspective.  That space.  We all do.  But I would speculate that he doesn't put it all out of his mind.  That as he casts his rod into the smooth lake water he wonders how he can protect his boys while letting them go at the same time.  

I Wish.

Louie has a diagnosis for autism as well as Williams syndrome.  We don't know for sure that he has autism because there has been some disagreement among doctors.  But the diagnosis has allowed us more services through our early intervention program.  It's interesting because sometimes it feels more like Louie has autism than Williams syndrome.  I thought the dual diagnosis would help us receive more services in the public school system as well.  But that is yet to be seen.

Louie's first IEP meeting was held yesterday.  And so it begins.  I had hoped for more.  For more understanding and less resistance.  Louie deserves extended school year services.  He meets all the criteria.  They denied my request, ignored my proof of regression and wouldn't provide their denial to me in writing.  So now here I am.  Wondering and wishing and not knowing.

I wish I didn't have to do this whole IEP, special education, therapy, make-sure-everything-is-documented-or-it-wasn't-said thing.  I wish it were simpler and our children were given exactly what the law says they should get.  Sounds simple but its complexities already make my head fuzzy.  I don't know what to fight for and what to let slide.  I don't want to start my relationship with the school off on a sour note but I want Louie to have every opportunity available to him. Louie simply doesn't have the opportunities most of us are given just by being born. Opportunities to start, to fail, to begin again, to make choices, to drive our cars fast on a summer night with all the windows down.  

I sat on my patio last night and realized again what it means to be an advocate.  It's not a matter of being right or who's pocket the money comes out of or revenge for the school's lack of, ummm...charisma. It's a matter of human rights.  It's a matter of society's responsibility to care for those who cannot care for themselves.   It's a matter of taking the strengths that Louie has and making them mean something.  It's up to us to shape those strengths and mold them into assets that will give Louie opportunity.  Isn't that what's it's about?  Opportunity?  Hope?  A future?

I want Louie to do the things that other 3 years olds are doing.  But he isn't and he won't.  I still sometimes find myself thinking "Well, when he learns to fill-in-the-blank, then he will be close to catching up."  And then gravity takes hold and the weight of the truth bears down on my disillusion.  He won't catch up.  He will never catch up.  So our goals and dreams for Louie need to be adjusted. 

What I want is for him to learn life skills.  The skills that come naturally to most of us; the ability to feed ourselves, brush our teeth, get dressed, shave, balance a checkbook.  I want Louie to be able to do these things.  Maybe this is obvious and something most other moms of kids with special needs have already realized but it just crystallized for me.  My goal for Louie is that he is able to have some sort of independence as an adult.  

Louie may not ever talk.  This has only been a passing thought in the past, quickly dismissed and ordered out, but this time it has taken a seat.  It's a real possibility.  I am not trying to be dramatic or negative.  Nor am I overreacting.  I just know too much now.  Louie's vocalizations have not really changed since he began vocalizing at 6 months or so.  He rarely babbles any consonents and his expressive communication, including gestures and signing, is little to none. There is a window of time for a child to learn to talk.  After it closes, it's rare speech will develop.  Especially conversational speech.  That window is not yet closed for Louie.  And in my mind, the window will never close completely.  But Louie may never talk and I must begin to prepare myself for that possibility.  

Ace, nine months, has almost surpassed Louie in every developmental area.  I guess that's why I have a hard time with the public school saying no to our requests.  No to a 3 year old who doesn't walk independently, talk or possess any self-help skills.  What more do they want?  I can't imagine.  I'm not asking for the world from them.  But I am asking for the world for Louie. Does that make sense?

I wish, I wish, I wish right now.  I wish I knew someone who has been exactly where I am. Someone who sat on their patio and wondered why the line between compromise and complacency is such a faint one.  I wish I had my degree in special education and law.  I wish Louie would say "mama."  I wish I knew how to prepare to raise a child who doesn't speak. 

Most of all, I wish Louie could run in the school office and say "Hey, principal!  I don't need your so-called stinkin' special education!" and then he would bound quickly out the door, out to the playground where he would kick the ball causing a cloud of dust to hazily rise up into the afternoon light, the rest of the kids, his friends, would laugh and run toward the rolling ball.  I wish that's what Louie could do.  

One Year Out: Reflections on Losing a Child

Joyce Heil, our pediatrician's wife, recently shared this essay with me.  It touched me deeply and gave me strength at a time when I needed it. She gave me permission to post it on my blog.  I thought many of you could relate and possibly, after reading it, take away some of her wisdom and lovely perspective on raising a child with a disability.  She wrote this a year after their daughter Jillian passed away.  She had Rett syndrome.  

One Year Out:  Reflections on Losing a Child

By Joyce Heil

We lost our eleven year old daughter, Jillian, a year ago.  She had a viral infection and suddenly her heart developed an arrhythmia that doctors could not fix.  While her death was sudden and unexpected, she was at risk for premature death because of her disabilities.  

Jillian has two older brothers, now 15 and 14, and a younger sister age 6.  I would like to share with you a few aspects of our journey this past year.  

Most people feel the loss of a child is catastrophic.  And it is.  But we lost a lot of our daughter years ago when she regressed in her development as a baby.  There were so many losses along the way as she missed milestones, lost what ground she had, and suffered the distorting of her body.  We tried as a family to look at those losses in the face and grieve them, at the same time receiving who she was and the gift that she was.  This year has been a continuation in that path of grieving and rejoicing that began with her diagnosis.  

As you all know well, caring for a disabled person is challenging:  anticipating needs for someone who cannot tell you, managing the medical treatments for a complicated patient, balancing the needs of this child with the rest of your family and your own life.  These are hard things.  We have seen since Jillian is gone, how she called us to a place of unselfishness that was good for us as individuals  and as a family.  Having someone around you who constantly demands that you think outside of yourself is truly a gift.  After Jillian died, my then 13 year old son said, "Mom, I don't think we get along as well as we did when Jillian was with us."  And he was right.  Jillian called us to a higher place.  

Similarly, we recently took our first big family vacation without Jillian.  We flew to southern California for a family reunion.  I don't know about you, but when we traveled with Jillian, we had to really function well as a family just to survive!  My husband and I had to work as a team.  The boys had to help push the wheelchair or corral their younger sister.  Everyone had a job.  Now it is easier.  The boys can listen to their music, Paul can nap, I can read, but we are at risk for being short with each other, self-absorbed and independent.  Now, we had to fight to be a team even though the trip was so much easier.  And we were not Jillians' ambassadors anymore.  We were just a regular family.  It is not bad to be a regular family, but I missed what Jillian called out in others as we pushed her chair.  She brought out the best in people, in us and those we met.  

I miss Jillian's smell.  I miss her soft hands, her furtive glances, her smile given when least expected.  I miss her simply being present.  

She taught me that suffering is wretched and that wretchedness must be faced.  But even when we want to run away so bad, brokenness brings a kind of life on this earth nothing else can.  I don't know how you feel about heaven, but one day my body and mind will be broken, too.  And I think she will be waiting to greet me.  I'm excited about that day.  

The work that you do, the caregiving you offer, the tears you shed, the love and joy you give and receive on your journey with these children is some of the most important and transforming work on the planet.