"taleS froM the trencheS

National Guard wife blogging about her adventures with three sons and the unexpected joys of Smith-Magenis Syndrome (SMS)
....um, yes. They are tears of joy. Really.

Our Squad

Our Squad

Wednesday, October 27, 2010

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…

Saturday, September 4, 2010

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.

Sunday, August 29, 2010

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....

Wednesday, August 25, 2010

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!

Saturday, July 24, 2010

The R Word

Almost ten years ago, Garrett’s pediatrician told us the news that would change our family forever: “Your son was born with Smith-Magenis Syndrome.” In those first hazy moments, we did not understand the severity of that diagnosis. And then we read the list of symptoms. Ironically, the areas that most affect our lives did not sound so upsetting that day.

I glanced past “disturbed sleep cycle,” not knowing that a decade later our household would still be on a newborn’s time schedule. I skipped over “prolonged tantrums,” not knowing we would forever be parenting the “terrible two’s.” I didn’t realize that “self injurious behaviors” would produce a familiar, sinking feeling in my stomach every time I had to search his body for the source of all the bright, red blood. I didn’t understand that “autistic-like behaviors” meant something as small as a change in routine or an unexpected noise would instigate those dreaded “prolonged tantrums and self injurious behaviors.”

No, the words that stopped my heart that afternoon were well into the fourth paragraph. Mental retardation. I tried to read the rest of the information on that sheet of paper, a grainy faxed copy from a text book. Mental retardation. Mental retardation. I could not get past that phrase. Mental retardation. I could barely breath, much less utter the words. Oh my God. This could not be happening to us, to our son, to me. Finally, I took a deep breath.

“Is he retarded?” I managed to ask the doctor. I looked down at my baby playing on the floor. His blond curls and cherub face did not match the despair typed out in my hands.

“I don’t know,” the doctor replied. “I have never heard of SMS. The nurse is calling Children’s Hospital for an appointment in the genetic department. ” I now understand that most syndromes include a diagnosis somewhere in the mild to moderate retardation range, but I appreciate the doctor dodging my question. I was not ready to hear that my son was mentally delayed. Mentally retarded.

That was our family’s defining moment. The day we became different from all of our friends and family. That was the very instant we lost our adult son, the man we thought would be Garrett. Little league, driver’s ed, high school prom and college graduation were all past dreams. We lost our daughter-in-law and our grandchildren. The sadness was overwhelming.

I had dressed Garrett that morning in his baby Nikes and Blues Clues shirt while imagining him in his attorney suit or doctor scrubs. That night; when I laid him back down to bed, one question kept playing over and over in my mind: “Who is going to tie his shoes when I’m gone?” Everything had changed. And I could not stop crying.

But the pain did not end with the diagnosis. I was dumbfounded when I realized our son’s medical condition had become synonymous with a childish insult. Retard. I don’t have to wonder if I ever used this word before April 4, 2001. I have home videos where I did say it, off handily and without a care. The very term that caused so much anguish to me and my husband is a wisecrack, a joke. I was stunned to find it hurt so much. And I had said it a thousand times.

I was taken aback by own reaction to that flippant expression. At first, I thought I was being over sensitive. I had always considered myself compassionate and educated. I had never used the N-word. How had this hateful utterance slipped by me? A year into the diagnosis, I read a Dear Abby letter from a special education teacher urging people to stop saying the “R-word.” Finally, proof that it was not just Charlie and me who had felt this way.

I have heard the argument that political correctness has gone too far. And I agree the list of “bad words” has grown quite lengthy. If someone uses a race, religion or sexual orientation as a put down, then it is offensive to those in that group. And it should be. So, the list keeps growing. Our generation has witnessed the morphing of the medical term “mental retardation” into a slur. The phrase is being removed from state agencies and text books the way previous expressions have been erased. I remember a time when “crippled” was the norm, but I doubt my children have even heard that remark.

But the insult is greater than any one word. It is the act of belittling someone. I will not be satisfied to hear someone replace the expression “that’s so retarded” with “that’s so special needs.” I predict that “special needs” and “developmentally disabled” will be added to the list in another twenty years. So if “retard” is replaced on the playground with a new term that implies “person like Garrett McGrevy,” then it is going to hurt my feelings. And I am going to ask you not to say it. Hopefully, I will ask you calmly and rationally, but don’t be surprised by my tears and emotional display. It is difficult to remain calm about my son. I intend to protect him until my last breath as he will never be capable of protecting himself.

The true irony of it all is that Garrett’s IQ level is not an affliction. It is an arbitrary number that comes from a subjective test that does not measure Garrett’s genius. He can remember the name of every person he has ever met, as well as the make of their car and the color of their vacuum cleaner. But psychiatrists will never ask those types of questions because our society values other talents.

In reality, Garrett does not realize he is being insulted because he does not know such cruelty exists. But his parents and his brothers do know that words are powerful. Dear Abby’s yellow and torn response is still taped to our refrigerator: “Mental retardation is no laughing matter to parents, siblings and other family members of people who have it. To use the expression as a derogatory comment shows that the speaker is both ignorant and insensitive.”

At the top of this page is Garrett’s Miracle League picture. I am proud to say he plays baseball...and he ties his own shoes before every game.

Go to the r-word website to learn what you can do.

Tuesday, June 1, 2010

The Adoption of Miss Kitty

“You can just take the boys to the pet store,” I told my husband, Charlie. “Their double stroller will not fit down the aisles of the book store. I should not be more than ten or fifteen minutes.”
Ten or fifteen minutes was just enough time for me to pick up the new potty training book all the support group parents were raving about, but not too much time for one man and a couple toddlers to get into any major trouble. Of course, I did not take into consideration that my husband’s Army National Guard unit had just returned from three months of training in another state. Or that until a week earlier, we believed his company would be deploying to Iraq for at least a year. We were not certain why Charlie’s mission had been cancelled, but since I was already in my second trimester with our third son, I was not going to question our good fortune. I headed off to find the miracle book and the boys went the other direction.
I had forgotten to write down the title of the potty training book. And it seemed there was more than one written on the subject. I roamed every aisle and enjoyed the peace and quiet. After three months of no privacy, not even in the bathroom, I may have let a little more than fifteen minutes slip away from me.
The method I heard about had worked for other families because it integrated a doll that could “go potty” in front of the child, which was followed by a party for the successful doll. Charlie would love that idea. I had already planned to have the “doll parties” while he was at work.
Our oldest son, Garrett, was three and no where close to independent toileting. He was born with Smith-Magenis Syndrome which involved many physical and mental delays, as well as autistic-like behaviors. He, like many SMS kids, was a visual learner and other families had success with the method. Our eighteen month old son, Patrick, was a typical child but had recently started copying Garrett’s behavior. I was hoping if I could get just one of them interested in the fine selection of potty chairs lining our bathroom, the other brother would soon follow. I had run out of ideas and was not looking forward to diapering three children at the same time.
At last, I had found the book and made my way to the pet store. When I stepped inside the doorway, I saw Garrett sitting in the front seat of the stroller. He was holding a pure white kitten like a baby, rocking it back and forth. It was a tender scene that was becoming few and far between in those days of major toddler meltdowns.
“Okay, I found my book,” I said to Charlie. “We should probably head home and make the boys some lunch.”
“Look how gentle Garrett is with this kitten,” Charlie answered.
“Yeah, he can be so sweet,” I agreed. “Okay, let’s go.”
“But,” Charlie explained, “Garrett turns away with the cat every time I try to take her back.”
“You’re not stronger than a three year old?” I asked.
“Well,” Charlie started, “I was thinking-“
“No,” I interrupted. “What if this book does not work?” I asked, waving the bag around wildly. “Did you forget we have another diaper on the way?”
“But look at him,” Charlie implored while rubbing the top of Garrett’s head. “This will help him learn to be gentle with the baby.” Garrett was playing his part well as he hummed a Barney song to the cat.
“Pregnant woman are not supposed to clean up cat litter,” I replied.
“Oh, I’ll take care of it,” Charlie promised. “Just think about it. We don’t have to make a decision right now.”
The teenage clerk walked up to Charlie and handed him a bag of kitten chow. “Here’s the paper work you need to take to the vet. She’s already had her first set of shots,” the girl said. “Oh, and I put your receipt inside the folder.”
I shot Charlie “The Look” as she walked away.
“I promise,” he began, “you will never, ever have to clean the litter box. I will take care of everything. Garrett just loves this kitten. You can see a change come over him when he holds her.”
“Well,” I agreed, “I sure see a change in you.” Charlie had always been a dog person in the BK (before kids) world. Secretly, I was thanking the heavens that the mall pet store did not sell ponies because I am certain we would have had one tied to our front porch.
Our life got much more interesting once Miss Kitty joined the family and Brennan was born. I would love to share more stories, but I have to go and clean the litter box…

Monday, May 17, 2010

Smells Like Money

“It smells like money to me!” is the response farmers utter to visitors that comment on the scent of our “country air.” Growing up in Ohio, I thought I had been exposed to all of Nature's various odors. And then I went on my first “safari”...
Over the years, my husband and I have left the county fair, the aquarium and the zoo within minutes after arrival because our son, Garrett, cannot handle the over stimulation from the loud noise and large crowds. When I found an advertisement about a drive-thru safari, I thought I had found the perfect day trip.
“We can stay in our own vehicle,” I explained to my husband, Charlie. “We do not need to worry about a tour guide with a loud speaker. You can buy food at the gift shop and the animals will eat right from your hands.” It was too good to be true.
So, we loaded up our three boys and my niece, Amanda, an expert at keeping Garrett entertained on long van rides, and drove to Lake Erie. Three long hours later, we pulled into the park and steered towards the gift shop. And we drove right past the playground.
“Slide! Slide!” Garrett started calling from the third row seat.
“Garrett, do you want to see a buffalo?” Amanda asked. At ten years old, she knew where this conversation was headed.
“I.....'ike...slide!” he answered.
“Garrett, do you want to sit up here with me?” Charlie asked, as he returned with two large cups of pellets.
“Slide?” Garrett responded. Ignoring the question, Charlie placed Garrett on his lap and I slowly drove to the gate. Realizing that Garrett was loose, the other three passengers removed their seat belts. Six faces tried to squeeze out the only two windows that rolled down. One face was looking everywhere but at the animals walking right towards us.
“Slide! Slide! Slide!”
“Garrett, look! Here comes a moose!” I tried to distract him.
“Slide!” he screamed as he tried to open the door. Terrified, Charlie turned on me like a rat on a ship that was sinking.
“Great idea!” he shouted at me just as a zebra stuck his whole head right into the van and began to inhale the pellets from the cup in Charlie's lap. I had never seen my children find their seats so quickly.
“My God!” Charlie shrieked. “Roll up the window!”
“Do you want me to decapitate a zebra?” I asked him. Besides, I was too busy hitting the button for my own window before that very large moose got any closer.
“What is that smell?” Amanda gasped. And then it hit me. Wow! The smell was unbelievable. And it smelled nothing like money. Not at all.
“Slide! Slide!” Garrett continued, not once glancing at the zebra. As soon as the pellets were gone, the zebra moved on towards the vehicle behind us. And Charlie wasted no time in getting his window closed. The van soon turned warm, so I cranked up the air conditioning.
“Breathe through your mouth,” I advised my passengers. In a booth half way through the safari, a teenager was selling refills of pellets. We pretended not to see him.
When we returned to the park, Charlie took the kids on a camel ride but Garrett and I spent the rest of the day on the playground. “I guess we don't have to spend a day's pay to have a good time,” Charlie commented on the trip back home.
I don't know when I am going to stop trying to impress Garrett. He can find all the joy in the world on the swing set in his own backyard.
I am reminded of this lesson every time I drive in the rain. And the smell of zebra permeates from the vents once again.

Friday, April 30, 2010

A New Daddy

My husband Charlie was deployed for twelve months with the Ohio Army National Guard in support of Operation Iraqi Freedom. A long separation is difficult for all families, but because we have a child with Smith-Magenis Syndrome, I felt especially overwhelmed. Garrett requires physical therapy for his low muscle tone, occupational therapy for his sensory issues and speech therapy for his speech delay and feeding problems. It was difficult to juggle all of these responsibilities and still tend to our two younger sons, Patrick and Brennan. After only one month into the deployment, I was beginning to feel pulled in three different directions.
Although he was eight, Garrett had no concept of time and believed Daddy could be walking through the door at any moment. When Daddy did not come home, Garrett cried off and on, throughout the day. Patrick, our kindergartener, knew exactly how long twelve months would be and he teared up at any mention of a holiday, school program or family event that Dad would miss. Brennan, age four, was ready to replace Charlie with any man that passed by. I had to continually reiterate that our Daddy would be coming home and that we were not shopping for a new one.
Finally, a “Carrie Wednesday” rolled around, the day we went to Children’s Hospital to visit Garrett’s favorite friend, the occupational therapist. The waiting room had a TV that played Disney movies and a magazine rack full of good reads. All four of us looked forward to “Carrie Wednesdays”.
As soon as we entered the building, Garrett grabbed Carrie’s hand and happily skipped off ready to go “play”. Patrick sat on the floor in front of the television playing “101 Dalmatians” and I was thrilled to find the latest issue of “Better Homes and Gardens”. I sat down in a chair ready for a whole hour of uninterrupted reading. I did not notice Brennan pointing to another parent on the opposite side of the room. “Look!” he shouted. “It’s an Army guy! Maybe he can be our new Daddy.”
Quickly, I scooped him up into my lap. “Use your indoor voice, Brennan,” I told him. “And it is not nice to point at someone.” I glanced at the man with a buzz haircut. He was flipping through a copy of “Sports Illustrated”, pretending not to notice us. “He is not an Army guy. He just has short hair. And remember,” I said swallowing the lump in my throat, “we are not going to get another Daddy. We already have a Daddy and that is the Daddy we are going to keep.”
Brennan went and sat down next to Patrick and I returned to my article on patio planters. The next time I glanced up, Brennan was sitting in the chair next to the man and was starring up at him as if he was a movie star. “Brennan!” I gasped. The man held the magazine up to his face, trying to block the unblinking gaze. Brennan grinned at me from across the room.
“I know, Mommy!” Brennan “whispered” with a raspy shout. He held up his left hand as a shield and began pointing with his right index finger. His face was beaming because; finally, he had found a loophole.
“This guy can be your new husband!”

Monday, April 26, 2010

Hey Daddy

“Hey Daddy! Hey Daddy! Hey Daddy!” The sing-song chorus was coming from the car seat behind me.
“What?” my husband, Charlie asked.
“Barney,” Garrett answered.
“Yes, Garrett.” Charlie sighed. “You can watch Barney when we get home.” Barney the Purple Dinosaur may be loved by children, but he causes quite a different emotion in parents.
“Hey Daddy!” We were so excited when our son spoke his first words. “Hey Daddy!” It did not take long for that excitement to wear off.
“What Garrett?” Charlie asked, again.
“Barney.” Our son had just started talking recently, so my husband was still very patient with this new game.
“Yes, Garrett. When we get home...” Charlie calmly replied. Charlie's temperament is a result of years spent worrying that Garrett's language would never develop. Charlie made countless trips through the stack of sign language flash cards, not to mention, actual trips to Children's Hospital Speech Clinic.
“Hey Daddy!” Garrett was almost two when he started speech therapy.
“Hey Daddy!” His third birthday came and went without so much as a sound.
“Hey Daddy!” Garrett's fourth birthday also passed without achieving this milestone.
“Garrett,” Charlie answered, yet again.
“Barney.” In this one quick trip to the grocery store, the miracle of speech is beginning to fade.
“I have already told you. Please, do not ask again.” Charlie has the patience of a saint.
“Hey Daddy!” As parents, the most challenging obstacle of our family's journey was learning that our firstborn had mental delays.
“Daddy!” We had dreamed of a collage scholarship, a law degree and even a term in the Oval Office.
“Hey Daddy!” My baby is not “smart”.
“Hey Daddy, hey Daddy, hey Daddy!” I am ashamed to admit how much that bothers me.
“Hey! Dad! Dee!”
“Garrett, enough!” Finally, Ward Cleaver's patience had run out. “When we get home, you can watch television. But, if you say 'Hey Daddy!' again, there will be no Barney today. Not at all!”
Ah! The peaceful sound of silence...anyway, as I was saying, my son is mentally dis-
“Hey Mommy!”

Sunday, April 25, 2010

Happy Birthday to Me

My birthdays have historically been a bust. As a child, the heaviest snow of the season always fell the night before, cancelling my party. Growing up and a getting new last name did not changed my luck. I spent my first married birthday on the couch with a bowl of popcorn and a “Lifetime Movie” because my husband Charlie was five states away. The funeral for Charlie’s dear Gram was held on my twenty sixth birthday and my thirty second birthday was completely forgotten. (On the other hand, that birthday has the best “ending” with a romantic dinner and new living furniture!) But January 7, 2008 is one for the record books. On the morning of my thirty sixth birthday, Charlie’s Ohio National Guard Unit was scheduled to leave their Armory for a twelve month deployment in support of Operation Iraqi Freedom.
Like all events in our life, things are magnified because of our son Garrett was born with Smith-Magenis Syndrome. “I think Garrett needs to see you get on the bus and ride away,” I said to Charlie. “I am afraid Garrett will believe you are at the firehouse and he will be expecting you home every morning.” Charlie is a full time firefighter and works a 24 hour shift, every third day. This does not help Garrett’s concept of time.
In the weeks leading up to Deployment Day, we tried to teach the boys how long a year is by marking a 2008 calendar with different events and explaining that Daddy will not be there. Our two younger sons, Patrick and Brennan, were upset at first, but we practiced talking on the webcam, writing letters and drawing pictures. When Deployment Day arrived, the five of us pulled into the parking lot loaded down with Charlie’s duffel bags and made our way inside the Armory. Just inside the doorway was a gumball machine, identical to the one at K-Mart.
“K-Mart!” Garrett exclaimed. “Let’s go! K-Mart! K-Mart!” We crossed the threshold and Garrett realized we were not at K-Mart after all. A full-blown meltdown began.
I managed to grab a big juicy apple from the VFW ladies before I carried a hysterical Garrett to the van. “K-Mart! K-Mart! K-Mart!” Twenty minutes later, I stood in the parking lot with two crying boys. Patrick was stuck to Charlie’s leg and Brennan was a puddle on the ground, yet we could still hear Garrett crying out from the van, “K-Mart! K-Mart!” Apparently, coming to see Daddy climb the steps to the bus was not one of my best ideas.
One quick kiss and Charlie was gone.
Once home, I left the boys in front of the television and went outside to remove the Christmas lights. When the last of Christmas 2007 was packed away, I headed back inside for some hot coffee. I was planning a good “pity party” since all hope of a birthday celebration was gone.
Garrett met me at the front door. “Close eyes!” he said. That phrase never fails to make me nervous. He led me into the kitchen and said, “Open!” The three boys, each with a large plastic spatula in hand and a beaming smile on their face, were positioned around the kitchen table.
“Happy birthday!” Patrick and Brennan sang out as Garrett cried, “Merry Christmas!”
In the center of the table was my biggest mixing bowl, over flowing with dark water. All around the table laid empty containers: a milk carton, a peanut butter jar, a maple syrup bottle, a honey jar and an egg carton. My apple from the VFW was floating in the middle. “What are those white things swimming around the apple?” I asked.
“Marshmallows!” Patrick replied. “It’s time to bake the cake, but we aren’t allowed to touch the stove.”
It seems this birthday was not a bust after all…
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