The Biology Lesson

“Did you know that the platypus is the only mammal that lays eggs?” my eight year old son, Patrick asked me. Sometimes I fear I may have given birth to the next Clifford C. Claven.

“What’s a mammal?” Brennan asked. At six years old, Brennan still believed I knew all the answers.

“A mammal is an animal that feeds its baby milk,” I replied.

“Like a cow,” Patrick added.

“Not just cows,” I was happy to have one up on Patrick. “So do cats and dogs and horses and pigs-“

“Cats! Cats have milk?” It was obvious Patrick did not believe me.

“Yes.” I reminded him of the litter of kittens we saw taking their lunch break.

“Oh, yeah,” Patrick nodded.

“Yuck!” Brennan held up his hand. “I do not want to drink cat-milk!”

Patrick laughed and shook his head, “Don’t worry Brennan. Humans drink
cow-milk.”

“No, human babies do not drink cow’s milk,” I was thrilled to be shooting Clifford down twice in one afternoon. “Babies drink from their mom just like the kittens.”

“What?” Patrick was dumbfounded. “No way.”

“How?” asked Brennan.

I was like a deer in headlights. I should have noticed where this line of questioning was headed. The victory of being the smart one was suddenly bitter. I couldn’t say the words. And of course, visual aides were out of the question.

“You know,” I looked at them with raised eyebrows.

“No, seriously. I don’t,” Patrick looked so innocent.

How could those boys not notice my cousin and her baby at the last family get-together? I’m sure the breastfeeding did not escape my husband’s attention.

I pointed my finger in front of me and decided to go with the visual aides after all. Patrick’s eyes bugged out of their sockets.

“No!” he cried.

Brennan covered his mouth with his hands and ran into the bathroom.

“Did I…” Patrick could not finish the rest of sentence.

“No, you took formula from a bottle,” I answered.

“What about me?” Brennan peeked around the corner.

“You all were feed from a bottle.” I could feel the sense of relief in the room. “Well, except for Garrett.”

There was a gasp. Brennan turned white.

“Is that why Garrett has SMS?” Patrick whispered.

“No, that is not why Garrett has SMS.” I tried not to laugh. For a brief second, I thought about discussing Garrett’s problems of latching on and how I thought something was wrong with me. I decided it would be more enjoyable if I saved that conversation for their teenage years.

Feeding problems are common with Smith-Magenis infants. But, we did not know Garrett had SMS until he was eighteen months old. By that time, I had lived many more serious concerns than my inability to breastfeed: Why is he not sitting up? Why is he not crawling? Why is he not walking? Why is he not sleeping? It was so “helpful” when our first pediatrician’s answer to every missed milestone was “you are holding him too much.”

“Garrett has SMS because that is how God made him,” I replied.

It is my canned response to that question. But there are moments when that does not satisfy my question of: “Why him? Why us?” But, I had dishes to wash and laundry to fold, so we all went about the rest of the day.

At bedtime, I caught Brennan crying in his bed.

“What is it now?” I asked. Brennan likes to pull out all the drama to delay the inevitable.

“It’s Garrett,” he wailed.

“Did he break one of your toys?” I asked.

We put locks on Patrick’s and Brennan’s door. They do have a right to have their things NOT destroyed…but, if they forget to put the lock on and Garrett “plays” in their room…who is to blame? It’s just one of the many steps in The SMS Dance that seems to constantly trip me and Charlie.

“No.” Brennan continued to cry. “I just can’t believe,” he paused and took a deep breath. “I can’t believe,” he sobbed some more.

Finally, he collected himself.

“I can’t believe my brother is a mammal!”

The Accident

I had to go home and change my clothes. Somehow I had managed to get all sweaty at the gym. I try really hard to stand against the wall and blend in. It’s a trick I learned in Junior High, but no longer easy to accomplish since I’m in my thirties with a personal trainer.

After I changed and enjoyed a healthy (code for “flavorless”) lunch with Charlie, I headed out the door for work. I tossed my laptop in the trunk and put my purse and bottle of water on the passenger seat.

The next few details are a little hazy.

I know I started the van.

I remember cranking up the radio.

Then there was a deafening “SCREETCH” and a jolt that stopped the van.

At the same time, I remembered Charlie’s pickup truck was also in the driveway. And I instinctively knew I had hit it. Probably something I learned from reading all those Nancy Drew books when I was a kid.

The damage was not as bad as I had expected. I really thought there would be a busted tail light/ head light combination. Apparently, my van’s side panel rubbed up against Charlie’s running board and shaved a couple inches off of it. The black shavings and one chunk of plastic lay on the ground.

There were not any scratches or dents or even broken glass. I think those step stools attached to trucks are just for show, anyway. And it was on the passenger side (my side) and really would not affect Charlie’s travel experiences in his truck. I was not worried.

I went inside the house to break the news to Charlie. Several of my girlfriends have questioned this move and I really can’t explain it. My usual intuition would be to lie and hide the evidence. All I can think is that I must have been in shock from the accident.

Thankfully though, Charlie was not mad. I know he was not mad because he informed of this at least twenty times.

“I’m not mad,” he stated for the fifth time as he walked around the van, in four inches of snow while wearing his slippers. “I’m not mad. I’m not mad. I just don’t know why. Why did you hit my truck?” He walked over to the truck. “There is plenty of room to get around it. I’m not mad. Can you just tell me why?”

There is no defense when you hit a parked vehicle. Ever.

“I’m sorry,” I said, “I guess I just didn’t look.”

“I know you didn’t look!” he yelled and then told me he was not yelling.

I do not know if he was trying to convince me or himself.

“I’m not mad. I just want to know why you didn’t look.”

Charlie walked back to the van. “Do you see that?” he asked.

I didn’t.

“Yes,” I replied.

Charlie rubbed at an invisible spot on the van. “That is going to rust,” he informed me.

I am pretty sure the whole van is going to rust. Someday. But I didn’t point out that fact.

“I’m not mad. I just want to know why you didn’t look.”

I let the truth slip out.

“I was turning up KC and The Sunshine Band,” I said.

“Disco?” he asked. The look he gave me told me it was the wrong answer. The shock was still affecting my common sense.

“Actually, I think KC and The Sunshine Band are more ‘funk’ than ‘disco’,” I corrected him.

And then, I'm almost certain, I saw him get mad.

Happy Birthday Dr. King

I was attempting to clean the kitchen table before supper.

More like moving The Pile to the counter in order to make a hole for the plates, but I call it “cleaning.” My first grader, Brennan, decided to help by unloading his backpack from the school day. He pulled out a paper birthday cake and laid it on the spot I had cleared. “Happy Birthday Dr. King!” it read.

“Who’s Dr. King?” I asked him.

“Well, he’s a guy that said people could ride on a bus,” Brennan replied.

I was pleased with that answer. Brennan tends to miss the morals of a story and focus on the horrific details.

“Oh!” he exclaimed, “you know what else?”

“What?” I was excited to see him excited.

“He got shot!” And there it was.

“Yeah, I know. That’s very sad,” I answered.

“Do you know what happened to the bad guy?” Brennan asked. “He went to jail. Where’s jail? What do the bad guys eat in jail? Where do they sleep? I wonder-“

“What else did Dr. King do, Brennan?” I asked.

“Do you want me to read the book?” The birthday cake had a book stapled to the bottom of it.

“Sure.” I said and sat down at the kitchen table. It is amazing how far his reading skills have come since the beginning of the school year.

“Dr. King was a preacher at a church,” Brennan began.

“BIRTHDAY CAKE!” It was as if Garrett dropped from the ceiling.

He snatched the paper from Brennan’s hands and began to sing. “Happy birthday to me! Happy birthday to Garrett, happy birthday to-“

“Garrett!” Brennan cried, “It’s not your birthday. “

Brennan grabbed for the paper. Garrett turned away and held the cake up higher than Brennan’s reach.

“Birthday cake! Yummy, yum. I’m going to eat,” Garrett sang as he made an exaggerated display of bringing the cake to his mouth.

“It’s mine!” Brennan hit Garrett in the back. Garrett swung his leg around in a counter attack and kicked Brennan. I stepped between them and grabbed Garrett’s wrist.

“This is Brennan’s homework,” I said to Garrett and took the paper back.

“NOOOOO!” Garrett screamed. He crossed his arms and stomped his right foot. “Humph,” he snorted for added effect.

And then Garrett turned and stomped off towards the stairs. No doubt in a search for another item of Brennan’s that he would wave above his head and begin Round 2.

Brennan turned to the second page. It was a picture of two hands shaking with a dove flying above them.

“He believed that all people should live in peace,” Brennan read.

Trick or Treat

“Trick or treat!” The refrain was coming from our seven year old son, Garrett.

“Trick or treat!” It probably would have sounded less grating if it hadn’t been six o’clock in the morning.

“Trick or treat!” And he had been singing it for the past two hours.

“Trick or treat!” Even with two pillows over my head, I could not block out the noise.

My husband, Charlie, sat up in bed. “Is it November yet?” he asked.

“Garrett will just start asking ‘Santa come today?’” I reminded him.

For us, the OCD-like symptoms that come with Smith-Magenis Syndrome are the most challenging. Garrett will fixate on a TV character or event and absolutely obsessive over it until we are ready to take a ball bat to the purple dinosaur or cancel all holidays.

“Mommy?” Garrett must have heard us whispering. The CIA has nothing on his intelligence work.

“He wants you,” Charlie chuckled.

I walked past Garrett’s door. The knob only works from the outside because Garrett likes to leave his room in the middle of the night.

“You awake?” His head popped out of the top panel. He must have emptied out his toy box, flipped it over and stood on it. Charlie did some carpentry work on the door so we could look in without waking Garrett. Not that he is ever (ever!) asleep.

“I’m going to make some Mommy juice. I’ll be right back,” I answered.

“Mommy juice” was a phrase Garrett invented when he was three. Because he had a speech delay, we used sign language to communicate. Since we did not have a sign for coffee, Garrett combined two words he knew to convey the idea of “coffee.” His unique way of looking at the world constantly amazes (and amuses) us.

“Trick or treat?” It is now difficult to remember why we spent so much time in speech therapy.

Downstairs, I turned off the door alarms and motion detectors. We had them installed after one scary night when Garrett walked out of the house at 3am. He was barefoot and there was frost on the ground. Thankfully, our neighbor leaves for work at that ungodly hour and brought him home. Charlie, who has been mobilized twice with the National Guard, believes Garrett has a future career testing military security systems. We can barely stay one step ahead of him.

All throughout breakfast, Garrett kept asking, “Trick or treat?” He dined on PB and J, a banana, some go-gurt and milk. It would be the same meal at lunch and again at dinner. Every day, day after day.

“Garrett, we will go trick or treating after dinner,” our son Patrick explained.

Although he is the middle child, Patrick fills the role of big brother at our house.

SMS can be an emotional rollercoaster. It is amazing to rejoice in Garrett’s accomplishments and start to believe his delays “are not that bad.” Then reality will rear its ugly head, like when our youngest son Brennan, surpassed Garrett’s abilities. It takes a conscious decision not to dwell on the negative.

After breakfast, Charlie announced he was going to mow the grass.

“Do you have to do that today?” I asked. Garrett hated the sound of the mower.

“What do you want me to do?” he answered. “This is my only day off and I need to mow one last time before winter.”

That is a constant battle for us. I prefer peace and the path of least resistance. Charlie’s philosophy is that the world is not going to adapt for Garrett, so Garrett needs to learn to live in the world. But, an event like beggar’s night can throw Garrett into a meltdown. I felt the need to keep him calm. If Garrett were to reach “the point of no return” in his behaviors, then one of us would have to stay home.

“Garrett we forgot to mark the calendar,” Patrick reminded him.

Always the peacemaker, Patrick brought Garrett a marker. We were checking off the days before Halloween in the hopes that it would help Garrett’s concept of time. When he was younger, we would simply not tell Garrett that an event was coming until it was time to start. But once he began attending school, it was impossible to keep news from him.

Garrett turned and saw the pumpkin sticker on today’s date.

“Trick or treat! “ He jumped and clapped. Patrick and Brennan joined in.

“Trick or treat! Trick or treat!” The boys were laughing and Garrett was grinning from ear to ear.

Then, the mower started.

Garrett fell to the floor. He covered both ears with his hands. He flailed back and forth.

And, then, he started the ear piercing screams. There would be no reasoning with him.

“Can we watch TV?” Brennan shouted above the screams.

“Only if you turn on the Disney channel,” I shouted back to him.

I stepped over Garrett and went to load the dishwasher. If we ignored Garrett, he would most likely calm down. Easy enough to do at home, absolutely impossible in public.

Somehow, Garrett heard the Handy Mandy theme song. He went and joined his brothers in the living room as if nothing had happened. It seemed like a good time for me to get dressed.

When I returned to the kitchen, Garrett sat at the table. He was wearing a chef hat and apron... and he was completely covered in flour. Every measuring cup I owned was lined up on the table and full of flour. He had my largest mixing bowl in front of him. It was filled with twelve eggs. There was not a single shell in the bowl.

I had forgotten to put the lock on the refrigerator door.

“I sorry. I sorry.” Garrett looked at me. “You mad?”

“Get in your room,” I said calmly. “I’ll be up to give you a shower.”

“Trick or treat?” he asked.

“Upstairs!” I shouted.

He covered his ears and ran upstairs.

I was cleaning up the mess when Charlie came in. “Maybe he wanted to be Casper,” he joked. I was not amused.

As I headed upstairs, the smell of chamomile became overpowering. I opened Garrett’s door and saw empty bottles of shampoo, bubble bath and shower gel piled up on his floor. They were poured out into the empty toy box. Garrett sat in the box, completely naked.

“All clean,” he announced through his powdered face.

I had forgotten to put the lock on the upstairs bathroom.

“Trick or treat?” he asked.

We spent the rest of the day answering that question. Charlie decided to set the oven timer. He told Garrett that when he heard the “beep, beep”, it would be time to get his costume. It seemed to do the trick.

Finally, the alarm sounded.

“Garrett!” I ran to the living room. “It’s time to get dressed! Trick or treat!”

Garrett looked at me. He shook his head and turned back to the television. “No thank you. Maybe tomorrow.”

Charlie took the boys trick or treating. Garrett and I stayed home and passed out candy.

And started the countdown to Christmas…

The Professional Mother

Fourteen days into motherhood and I was already a professional. I knew which cry sounded hungry, which cry sounded sleepy and which cry sounded like my own. I was a professional with a slight hormone imbalance.

So, when the day arrived for my son’s first pediatric appointment, I did not doubt my ability to handle the situation. I packed two bottles of formula incase we were away from home base for longer than four hours. Since I was not familiar with the temperature of the office, I brought three changes of clothes: summertime, mid-autumn and dead of winter. Rather than chance a miscalculation of diaper changes, I took the whole bag of Pampers as well as a new container of wet wipes. I also grabbed the two folders of paperwork I obtained from the hospital nursery. I was not going to be caught unprepared!

Loaded down with my purse, two full diaper bags and a baby carrier, I approached the front desk.

“Garrett McGrevy for his two week checkup, “I panted to the extremely young receptionist.

“Do you have an insurance card?” she asked me in between pops of her bubble gum.

“Of course,” I replied.

She handed me a form to fill out while she left to make of copy of my card. I finished the form, in record time, and looked around the unseasonably cool waiting room. I saw a woman flipping through a magazine while her baby sat in his car seat on the germ infested carpet. He was directly in front of her and she was propping up a bottle with her foot.

Appalled, I turned away just in time to see another mom pick a pacifier up off the floor, wipe it on her sleeve and pop it back into a tooth filled mouth.

“Amateurs,” I gasped and handed the form back to the receptionist.

“Wait!” she said as I turned to find an empty seat. “You handed me the wrong card.”

“Um, I don’t think so,” I answered, “we only have one insurance card.”

“The information does not match,” she told me and pointed towards the form. I noticed little heart stickers on her fingernails. She was pointing to the section regarding information about the patient’s mother and father.

I looked closer. Suddenly, I realized that on the line reading “mother’s name and father’s name” I had not written my husband and myself.

Instead, I had printed the names of my parents!

That was when my career as a professional, intelligent mother ended. I had the job two whole weeks before a wet finger tip became as good as a wash cloth and tepid formula was warm enough.

I had a good run.

Do Fun Stuff

Today is a big news day in the SMS community! (Today, as in MONDAY AUGUST 30, 2010...pay no attention to the wrong date above.)

The first ever charity album for PRISMS is being released. And you do NOT have to drive across town and stand in line to get your copy! Apparently, you can buy songs across the internet now...who knew?

"Do Fun Stuff" is a collection of orginal children's songs and 100% of the proceeds will go to further research for Smith-Magenis Syndrome. We have already listened to one of the songs and the boys love it. It has the word "pee" in it...what's not to love?

All songs on "Do Fun Stuff" were donated by various artist friends of Ryan Marshall, the step-father of child who was diagnosed this past year. Ryan has put SO much work into this project! I am amazed by parents who manage to get beyond the grief of the diagnosis and move right into "how can we help other families" in a year's time.

We hope that it is such a huge hit that PRISMS can fund a graduate student to research SMS and support our SMS families.

Read below to see how you can purchase music across phone/cable lines (and whatever wi-fi is made of).





And Thank You, on behalf of our PRISMS family!

I am going to go attempt to download it now.

Just last week, I threw out my cassette tapes. I almost took a picture of the big pleather box (which opened on BOTH sides!) laying in our trash can. I'm sure Charlie believes I hid it somewhere because he's been saying I need to get rid of my "junk" for years now.

I will admit that I kept my Milli Vanilli tape because I know it is going to be worth money someday. I am the only one who did not take it to the radio station to be crushed by a steam roller....

You Know You Are a SMS Parent...

…if you roll your eyes at a mother whining about her baby’s nighttime feedings.

…when you spend all day cleaning and your house is still a mess.

…if you plan your vacations (or holidays!) around the location of other SMS families.

…when you snort loudly at a father grumbling that a storm woke his child during the night.

…if your conversations contain more acronyms than a military SOP.

…when you kick yourself for not inventing Clorox bleach wipes.

…if you roll your eyes and snort loudly at a mother complaining about how long her teething baby cried.

…when you find yourself using sign language and you are not driving in rush hour traffic.

…if most of your friends are your child’s former teachers, aides, bus drivers and therapists.

…when you never leave home without a Plan B, or Plan C; and sometimes even a Plan D.

…if you roll your eyes, snort loudly and shake your head at a father moaning about his child’s bad dream waking up the household.

…when you have watched three generations of Barney kids grow up.

…if you know that white vinegar gets “the smell’’ out of clothes, carpeting and pretty much everything. And you really, really love white vinegar.

…when you have locks on your refrigerator and pantry doors, but you are not on a diet.

…if your retirement plans include three, not two.

…when you have completed more home repairs than Bob Vila.

…if you funded a Christmas with Huggie points, remember when Barney’s picture was not on Luvs and were the first to try Pampers cruisers because you have been buying diapers for more than a decade.

And, finally, you know you are a Smith-Magenis Syndrome parent when you roll your eyes, snort loudly, shake your head and start a tirade at parents who have the audacity to insinuate that they have any idea what it feels like to be tired!