Sad farewell

My best friend is moving to Hawaii tomorrow. In the 20 years that Autumn and I have been friends she has visited family in Hawaii many times and she also lived there for several years at one time... but she always came back here. So I think I still haven't accepted the fact that she's actually moving there for real this time. We spent the day with her and her family yesterday so that our kids, who have grown up together, could have one last day of fun. Jackson and Keana were kind enough to pose for a few photos at the end of the day

Another good friend joined in the photo shoot so that we could give Autumn and her family a proper send-off



We love you. We'll miss you. Come back and see us soon.

Fun with fundi

My midwife appointment yesterday revealed that I'm measuring small for my date. A measurement taken from my pubic bone to the top of my uterus, or fundus, should come close in centimeters to the number of weeks that I am pregnant. But yesterday's measurement showed no change over that of the previous measurement 4 weeks ago. I had a sneaking suspicion that this could have had something to do with the fact that this baby seems to be stretched out across my belly instead of in a head up or down position. If she's horizontal, or transverse, then so too is my uterus which would make for a lower fundal height. Well, I should have left it at that. Instead the midwife and I decided to take a quick look on ultrasound just to be safe. Sure enough, baby is transverse and measuring just perfectly for my due date but.... my amniotic fluid is on the low end of normal. You might recall the puke fest that we had going on here last week and it's taken a while for my appetite to return to normal so it's entirely possible that I just need to increase fluids and nutrients. But the midwife left me with another recommendation: try to limit activity this week. Ha! I know I shouldn't laugh because it's a great recommendation and low amniotic fluid can turn into a serious problem, but, ha! Just getting a resistant and squirming Sam dressed in the morning is an aerobic workout. I go back next week for another check-up so we'll see how well I've done.

Peanut butter and honey on toast

That had been David's puke-friendly (now there's a hyphenated word you don't see too often) breakfast selection. I chose it for the following morning when I began feeling nauseous and, you know, it didn't taste too bad coming back up later on that day. Well chosen. Pairing it with a glass of sprite made the experience none too unpleasant. All in all a 5 star upchucking affair.

Strawberries and green beans.

So the boys have been puking this week. It started with Sam throwing up the entire undigested contents of his lunch; since he eats mashed foods anyway, the pureed green beans and tofu looked pretty much the same coming up as they did going down. He seemed pretty surprised by the whole experience but not entirely disturbed. I guess when you're three years old and have been through as much as Sam, green liquid bursting forth from your mouth and nose is just to be expected. He took it all in stride.

Then last night, after Sam had gone a full 24 hours puke free, Jackson started up. Now Jackson has only puked once in his life and that was over 5 years ago when he was a mere babe. So you can imagine that he might find the experience a bit more distressing when chunks of strawberries came flying uncontrollably out of his mouth. He had been asleep for about an hour when the upheaval started. David and I ran into his room to hear him cry, "It just won't stop. It keeps coming. I can't stop it!" After things had calmed down and I had gotten him into the bath he was still very worried that he would start throwing up again. I found myself reassuring him that it was perfectly okay to let the pink chunks of fruit fall freely from his mouth into the toilet or the bowl we had provided. And I thought, lucky boy to have had strawberries as the last thing he'd eaten; I'm sure that was a lot more pleasant coming up than green beans and tofu.

This morning David and I both chose to stray from our usual breakfast of cereal with milk. I eyed his peanut butter and jelly toast while he took in my waffle with strawberries.
"I'm choosing my food based on what I think might taste best coming back up... just in case."
"Ha! Me too."

If it's yellow...

Jackson has a hard time remembering to flush the toilet after using the bathroom and like that funny little guy on Ally McBeal, I like a fresh bowl. I've been reminding him for years to flush but it still hasn't sunk in. If I catch him coming out of the bathroom and tell him to go back and flush he acts like I've asked him to give up one of his kidneys to a sick relative he's never met. To make matters worse, our toilets are those environmentally friendly low-flow types that back up if anything larger than a grape tries to go down and frequently require several flushes to rid the bowl of all waste. So I find myself checking in on our toilets a few times a day to make sure there's nothing lingering; this way we can actually go for more than a day or two between cleanings without something starting to grow in there. Not sure I was really going anywhere with this just thought it was time to include a post about toilets.

A curious parting

Yesterday morning the boys and I were pulling out of the garage on the way to school while David waved from outside the car. I rolled down the rear window and Jackson yelled, "Bye Dad! Hope the seafood's fresh!"

The adventures of super turkey

I believe it was in 6th grade that I learned how much I enjoyed writing. I wrote a story called The Adventures of Super Turkey - it must have been some Thanksgiving themed writing - and it was picked by Mr. Reppard to be read in front of the class. Although I didn't think the story to be too shabby I was still nervous as hell to read it in front of a class full of unforgiving, pre-pubescent peers. The story full of humor and, well... adventure, was met with friendly laughter and applause.

That was 20 years ago and I've done a lot more writing since then, though never again about a turkey. All along the way my writing has been met with favorable response by friends, family and professors. I even dared once to enter a poem in a contest held by a local paper and won second place. Despite the years of praise I still often wonder, "Does anyone really enjoy reading this crap I write?" And apparently from the emails, phone calls and other various comments the answer is "yes." So thank you to everyone who reads and enjoys my writings, and especially to those who tell me how cool my blog is. Twenty years of stroking just hasn't been enough for my ego.

Welcome to the ghetto

A little over 3 years ago David and I were thrust into a world we could have never imagined. The day Sam was born was the beginning of a new life for our family. We were bombarded with advice from well meaning friends and acquaintances; some of these people had experience with this new world, but most did not. The support of these people was amazing, invaluable and something for which I am eternally grateful; but their advice always missed the mark. We also were visited by "professionals" who came bearing books and essays to help us understand and cope with our new life. One of the supposedly helpful materials given to us was a little essay called Welcome to Holland. Now I don't know what disability the child of the author had but I have to believe that it must be something mild if she chose Holland to use as her metaphor. If I were to write a similar piece I would probably title it Welcome to the Ghetto. You boarded that plane expecting to arrive in beautiful Italy only to find yourself exiting a urine soaked cab as some transient holds a gun to your head. Realizing your roundtrip ticket was mistakenly issued as one-way, you don't shrug your shoulders and learn to love your new home; instead you vow to fire your travel agent and find a way to Italy. Unfortunately the transient made off with your cell phone and all you credit cards. While I'd love to be in Italy or, hell even Holland, I have learned to love my ghetto life. But David and I have still had to find our own way of surviving in the hostile new place we found ourselves and no fluffy book on special needs children or clever essay on accepting our new life helped. Actually, I believe most of this well meaning material and advice only fueled the fire for our favorite coping mechanism: black humor. Some of the stuff that came out of our mouths shocked even us which made it that much funnier. Unfortunately, there are quite a few people who would love to see us tarred and feathered for some of the comments we've made. One mom on the Joubert Syndrome list I belong to wrote that there should be a special place in hell for anyone who uses the word "retard." Which I just think is... well, retarded. And I maintain my right to use that word when it makes an almost unbearable situation just a bit humorous for David and me, or if the word conjures up the appropriate image with all the social stigma attached to drive home a point.

And all this was leading up to explaining the real meaning behind the "2.7 kids" in the blurb beneath my blog title and its reference to Sam's incomplete brain. Even though it was damn funny to me and David at one point it still seems a bit callous when written here. Now I shall take my children, properly assembled and not, and go into hiding for awhile.

Maybe she caught a touch of the southern twang

Sam caught a nasty stomach bug last week. He's got kind of wonky digestive issues so we really weren't sure at first if this was a virus, something he ate, or just Sam. When I called the school office to tell them he would be absent the woman in the office asked if he would be out due to illness or some other reason.
I said, "Illness. He has diarrhea."
"Oh," she balked, "TMA. You know. TMA." First of all, you wussy, you mean TMI as in too much information. Second, no it's not. I'm sharing this little detail hoping that you might tell me if this is something going around the school right now in order to help us determine the possible cause of Sam's illness. It's what people do even in polite conversation:
"I've had this terrible sore throat."
"Oh, my friend's daughter had that and went to the doctor who said that's been a common complaint at his office lately. Guess it's going around."
If I had wanted to really gross you out I could have told you about how I went through 6 diapers with Sam all in the span of 15 minutes because the poop just kept flowing. And at one point it was coming so fast and furious that I didn't have time to cover up his visceral spout and had to jump out of the way of the frothy brown geyser. My description would not be complete without adding that we tried to rehydrate the poor boy with fluorescent orange Pedialyte, and because his bowels had been so violently emptied, he shat orange liquid within minutes of imbibing the glowing drink. So there's your TMA you prudish clod.

Morning paper

Reading the paper this morning and read about an ancient American Indian burial site unearthed in a city nearby. The reason it was discovered is because workers were building a new retail and residential development. Residential? Ancient Indian burial site? Two words: they're here. Apparently a bunch of tribal reps from one of two tribes that deals with Indian burial sites in the county showed up to the site. The Chairman of the tribe said they deal with this stuff all the time and wouldn't discuss how the tribes and developer planned to move forward. I'm such a cynic. As I read further into the article I had to share with David. The following conversation ensued:

"Wouldn't say how they planned to move forward. I'm sure the developer just pays 'em off."

"Shit. It's like Poltergeist."

"'No biggee. Just go ahead and pave over our ancestors. But if you want us to remove the curse that will be an extra $4 million.'"

"'And in that corner over there could you build us a little casino?'"

Mr. Bell's secret fertilizer

Those of you with children may be familiar with the songs of Raffi. I like Raffi. I may be a bit tired of him after listening to him for almost 6 years, but he remains a decent fellow in my opinion. Some of his songs are downright fun like "Bananaphone;" others, more serious, convey his respect for nature. Some are full of lessons and meaning and others are empty but entertaining. Yet all of them are acceptable for listening. There remains one song, though, that I can't figure out. "The Changing Garden of Mr. Bell" is a haunting little number about a man who has a colorful and everchanging garden in his yard. Seems innocent enough, right? And it could be until our attention is called to a photo on Mr. Bell's mantle that pictures what may be his missing wife and child:

I once saw a photograph, upon his mantle shelf
Of a beautiful lady, a child in her arms
And the young Mr. Bell himself
I wondered out loud about them, and he answered
In the strangest way,
He just said "look, see how the garden grows,
It's always changing ev‘ry day"

from The Changing Garden Of Mr. Bell
(Janice Hubbard/Michael Silversher)

Do you get the feeling that Mr. Bell might have some skeletons in his garden? You might think that I'm reaching but for the closing lines of the song:

Life's a mystery, full of secrets that might tell
In the changing garden of Mister Bell

Convinced now? It gets even weirder:

See the sun through the curtain lace
Dapple his face and hands

What man in his right mind has lace curtains? Clearly there's something very wrong with Mr. Bell. And I'm left wondering what a song about a man who possibly murdered and buried his wife and kid in his garden is doing on a children's album. What was Raffi thinking?

The cheese stands alone

There's a little boy in Sam's class who has always puzzled me. He's a funny little guy who has the appearance and mannerisms of a rat. Now before anybody takes offense at the audacity of me comparing a child with special needs to a rat... just stop... because you haven't seen him. He does bear a striking resemblance to a rat. There's nothing wrong with this either. Unless you find rats to be particularly vile and disgusting creatures then there should be no issue with simply pointing out that an individual shares an uncanny likeness to a small, furry rodent. Have we cleared up the whole political incorrectness crap? Because I do like this little boy. Okay, so part of my affection for him does come from the entertainment value he provided for the week I spent in Sam's class. Shit, there I go again. I feel like I have to clear the air once more. Forget it. He's a cute kid, special, a real dear, a true angel. Have I got the special needs party line down yet? You've heard it before. He's a real blessing... but he still reminds me of a rat!

So the whole time I was in Sam's class this little boy was busy. He always seemed like he had something to do or somewhere to be. He had a plan. You could tell this by the way he would lay his index finger next to his mouth and pause for but a second. Then he would set off to carry out whatever it was that he had been scheming up. But the end result was never to his satisfaction... and he would stop and re-start the activity then stop again... only to pause with his finger aside his mouth to think things through once more. Meanwhile he would make little grunting noises as if caught up in the effort of the plan. It was like watching a rat in a box maze frantically searching for the right path that led to the cheese. Turning this way and that, hitting a dead end, going back to the beginning, rushing and twitching for that cheese. Only for this little boy it was becoming quite clear that there was no cheese at the end. He never seemed to find satisfaction with his plan. Then one day he tried to engage me in his impossible plan. With my hand in his he led me around the classroom. Over to the light switch. Was I to turn it on? Off? No no... that wasn't right. We went back to the beginning. To the light switch again. Still the solution did not appear. So we tried the refrigerator. Nothing. Hand me the toy phone then. Shall I talk on it? Do you want to? No, not that one? How about this block? Oh, back to the phone. The block. The phone. The light switch? Finally I said, "I'm done getting the run around. I'm stopping this madness and staying right here." He stopped and looked up at me with his beady eyes. Then he took my hand once again but I wouldn't budge. He pulled and instead of yielding I twirled him around. And again I twirled him until his little face lit up almost into a smile. I'm on to something, I thought. So I twirled him again and saw him smile for the first time. Then he nudged me while still holding my hand and I twirled for him. Together we twirled and I heard him laugh. We twirled several times until I began feeling dizzy but I didn't want to stop because I realized that this was the longest I had seen him participate in any one activity and it was good to hear him laugh. I was dizzy and happy and he was happy and dizzy and together I think we found the cheese.

If only we weren't so damned concerned with safety

The mini-van shopping has begun. Somehow I thought we'd be able to fit 3 children into a Honda CRV. Little did I know that carseats are super-sized now. Is that because cars are getting bigger or children? We even tried fitting Jackson in between two carseats without his booster. It can be done but not exactly safely. In the event of a side impact his little head would be crushed between the two very hard outer shells of his siblings' carseats. And, as of right now, he's the child who holds the most promise so we're not willing to take the risk. I have never wanted a mini-van. Actually, I do believe that I swore once on my mother's life that I would never be caught dead driving one. Boy she's going to be disappointed. I used to think that a mini-van represented all that was wrong with the world. Gas guzzling cars that accommodated more children than any two people had the right to conceive. They were a sign of how we raped and overpopulated the earth. I was such an idealist back then. Oh, how things have changed. I still agree with the basic premise of my previous belief; I just don't care so much anymore. That's not completely true because I have given our situation some justification... er, I mean, thought. First of all, mini-vans have improved on gas mileage. Second, although it's true that we're over-populating by having more kids than there are parents, reproductively speaking Sam is a dead end. Okay, really we're considering a mini-van because we're looking at future wheelchair lift potential; something most new car buyers fortunately don't have to consider. Still the old me will be having a good laugh at the new me if and when I get behind that wheel.

And the result is....

It was pretty clear from the ultrasound this morning that we're having a girl! I probably should have waited to write about the sock issue after finding out the sex of this baby but I had a pretty good feeling that I wasn't carrying another dirty-sock-desk-cubby-stuffer.

Boy? Girl? What it really comes down to is socks.

Tomorrow I go in for my ultrasound which should reveal the sex of this baby. Honestly, David and I will be happy with a healthy baby of any sex. A baby is a baby. I will admit, though, that at some point I would like that baby to turn into a girl; maybe this could happen around the age of 3 or 4. I've talked to my friends who have little girls and there is a difference between boys and girls. Really. Now I know there are pros and cons to both. I would never assert that one sex is better than the other. At least not on a public blog. And I like my boys. What I don't like is their dirty socks laying all around the house. Wherever David removes his socks they remain... for days... until I pick them up. Sometime last year Jackson decided to follow his father's example and began leaving his socks laying around. Since I'm bigger than him Jackson actually listened when I threatened to throw away any dirty socks I found laying around. For several days it seemed as if Jackson was depositing his dirty socks into the laundry basket. And then I found about five days worth of soiled socks shoved into a cubby of our downstairs desk. Later that day when I told this story to David he said, "Oh yeah, Jackson mentioned to me a few days ago that he was doing that." Now you would think a good father would ask his son to remove the socks immediately and put them in their proper place, but in David's world and in the world of boys a desk cubby is a perfectly acceptable place to stash dirty socks. Are you beginning to understand why this household is in need of some more female influence? I've found socks in so many various places inside the house and out that laundry day can be like a treasure hunt. Only the treasure is a dirty sock. Now that both boys are in school I'm feeling like I have more time to have some fun with this before the baby comes. I'm thinking that after I do laundry I'll hide the clean socks around the house for David and Jackson to search for every morning as they try to get ready for work and school. Maybe I'll even mix it up a little and hide a mismatched pair here and there.

School day horror

Sam spent his first day at school without me today. When I told the teacher that I would be letting him fly solo today she asked sarcastically, "So soon?" Fine. So I'm a little attached to that little bugger and couldn't bear to leave him alone last week. But I think I did the teachers a favor because he gave them a taste of the real Sam today. When I arrived to pick him up ( a bit earlier than school actually let out, of course), Miss Peggy told me he had poked himself in the eye. This eye poking and scratching was something I had been warning them about all week but they had yet to see it for themselves since I had always been there to mitigate. Fortunately, the damage was not bad at all but I let the teacher apologize and sit with her guilt for a bit. Then she told me how Sam had scared her because he got upset about something while she was changing him on the changing table and nearly hurled himself off. Another little thing I had warned them about. Apparently she didn't know how strong and determined he could be. He ended up peeing all over his clothes while his diaper was off during this struggle. I had forgotten to bring an extra set of pants which is why I found my son dressed in some god-awful blue polyester britches about 2 sizes too small for him. I swore I would never be one of those moms who dressed her poor retarded child in some get up like green sweats banded at the ankles, a yellow turtle neck and sneakers that they haven't sold in any reputable store since the mid-seventies. And never would my child be caught dead in polyester. I should have taken a picture so that you could experience the true horror yourselves. But there shall be no photographic proof of this catastrophe. And if any of you mention this traumatic event to me in polite company I will deny it and call you a poopy faced liar. The true chiller here is that Sam had a doctor's appointment right after school and I did not have any pants for him in the car. Not one to let my child be publicly humiliated we rushed home to grab some pants. Jackson was extremely distressed over the fact that I didn't change Sam right away but I assured him that I would change him out of that freakish apparel as soon as we got to the parking garage at the medical building. And you better bet we found a parking space in a dark corner away from public viewing.

The happy chair

Just look at this adorable child.

This is Sam sitting in his chair at school, enjoying circle time. He loves circle time. There's singing and clapping and music and kids who say hi to him and instruments that he gets to shake and jingle. Then there's the chair. The chair fits him so perfectly. He can rock in it and lean forward without falling onto his face. He likes the chair.

Okay, that's all you get for now. David and I have so many mixed emotions about sending Sam to this school that I'd end up writing a novel if I got going. So I'll give you the chair and leave it at that. The chair is Sam's happy place. I think I need a chair like that to sit in when I go back to school with him tomorrow.

Five year olds are weird

When David was little he used to take his marbles to school in a Crown Royal bag. At his last birthday he received a bottle of Crown Royal inside its purple bag and we discussed the slight inappropriateness of a child taking this bag to school. So what does David do with this bag after removing the alcohol? He gives it to our 5-year old son. Jackson's not big into marbles, but he does like animals. Instead of storing his small, plastic animals inside, he crams into it a large, stuffed dog. Lily is the dog's name and the Crown Royal bag became her new sleeping bag. This was all kind of cute until I realized that Jackson sleeps with Lily every night and now Lily would be snoozing alongside my son in a tossed out booze bag. Eventually Lily must have gotten tired of the old whiskey sack because she only slept inside of it for a few nights. At this point the bag was elevated to the level of Jackson's other stuffed animals who shared his bed at night. There it lay, the empty sack, next to Lily and my sleeping boy. This was far more unsettling than using it as a marble tote.


Just the other night Jackson came to me, beaming with pride that he was able to stuff Lily, Flower the other dog, and Violet the lizard all into the sack. He took them to bed this way. Apparently they were all going to have one big slumber party inside.

A small pat on the back

Sam had his 3 year check-up the other day and I'm happy to report that he's a whopping 29lbs. That may not mean much to you but what it does mean is that he's in the 25th percentile for his age. What? You're still not impressed? How about if I told you that most children with Joubert Syndrome affected to the same degree as Sam... and some less affected... are fed via g-tube? And some of these children have had g-tubes put in as late as 3 years of age due to an inability to receive adequate nutrition by mouth. I'll make sure not to leave out the part about it taking us 4 months of working with Sam until he could properly latch onto a bottle and coordinate his suck-swallow-breathe reflex. And despite his recent set-backs in feeding due to illness he's up in rank on the growth chart from his usual 10-15th percentile. Of course, some of this success is due in part to the extreme stubborness exhibited by David and me, and our near refusal to let any doctor cut a hole in our little boy's tummy. But a big part of the congratulations should go to Sam and his amazing propensity to awe even us with his multifarious abilities. Good job, precious boy.

Dino Attack

Last week when we were up visiting my family, Jackson had a sleepover with his younger cousin, Kai. According to my brother the boys did not fall asleep until well after midnight. The following night was Christmas eve and we all stayed over at my brother and sister-in-law's house. Jackson and Kai had been together for two days, up way too late the night before and were very excited about Christmas the next morning. So it should have been no surprise that a few minutes after putting them to bed in the same bunk one of them would be crying. I don't know exactly what happened but from Kai's hysterics and the guilty look on Jackson's face I knew something bad had gone down in that bunk. While my brother took Kai from the room to comfort him I launched into Jackson with questions about what had happened. But the kid wouldn't talk. I could tell I wasn't going to get anywhere with him unless I played the really mean mommy card; I threatened to burn every single present of his under the tree. He fessed up and told me he had done a "dino attack" on Kai. What?! "Why did you do that?!" "I don't know! Don't ask me that. It's too hard to explain!" I stopped the questioning because his last answer made perfect sense to me. When you're a five year old who has been anticipating spending time with your only cousin for weeks and you've played intensely together for the past two days while dealing with physical exhaustion and the excitement of Christmas, the next obvious thing to do with that cousin when put in close quarters together with a complete lack of adult supervision is to go dino on his ass. Am I wrong here in thinking that Jackson's actions were completely justified? Certainly not the way one should behave, but behavior to be expected under the circumstances. Once I understood it from his point of view the night went much more smoothly. Sometimes it helps me to get in touch with my inner 5 year old.