Wednesday, September 17, 2008


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.  

Monday, September 8, 2008


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. 

Wednesday, September 3, 2008

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 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