Wednesday, March 21, 2012

For My Son...

Today is World Down Syndrome Day! (3/21 for 3 of the 21st chromosome). In celebration of our sweet son, I wrote the following acrostic poem of his name...

Beautiful boy with a big future!
New accomplishments
Adorable and amazingly awesome!
Made in God's image
Inspirational and irresistable!
Needs lots of kisses and cuddles

Loved, loved, loved!

Healed of seizures and hearing loss!!!
Endless possibilities
Miracle man!
Mighty warrior in training
Near to God's heart
Growing so big!
Radiates life!

Saturday, March 3, 2012

The Essence of Benjamin

I wrote this in January...

One of the greatest joys of watching my son grow has been seeing the emergence of his delightful little personality, which has really started to shine! At the time I write this Benjamin is a little over two-and-a-half, and I wonder at how quickly the time has gone by. On the other hand, though, it’s so hard to imagine life without him. His exuberant laugh and contagious smile has brightened many a person’s day, especially his mommy’s! That is not to say that all times are are filled with laughs and smiles; he definitely knows how to demonstrate the temper of a two-year-old! Benjamin releases the full expression of whatever emotion he is experiencing at any given time, without reservation or shame. A few pages of writing could never do justice to describing all of my little guy’s personhood, but I hope to at least capture the essence of who Benjamin is during this stage of his life.
I think the best way to go about this is to describe a typical day in our lives, and share my additional thoughts as we go along. Any time between 5:00-6:00 am, Benjamin announces to the world that he is awake and ready to begin his day, as evidenced by his cries of protest from his crib. He’s awake, so everyone else should be as well, right? Now if it’s too close to the 5:00 hour, Mommy and Daddy are content to allow our early riser to fuss/play/hopefully sleep in his crib a while longer. Once the lights are flipped on in his room, the fussing ceases as he turns his head toward the door in anticipation. If he woke up in a good mood, there are smiles and squeals as one of us pulls him out of the crib and proceeds to change his diaper. If he woke up in a bad mood, he continues in his complaint throughout his diaper change as if to say, “Hurry it up already! I want my breakfast!”
As we approach is high chair, his little legs are already kicking in anticipation. Most morning meals consist of a sippy cup of soy milk mixed with chocolate or vanilla vitamin powder and a warm bowl of oatmeal with fruit mixed in. As I scoop up each bite of oatmeal, I hand the spoon to Benjamin to feed himself, which he is fully capable of doing. Some days, though, he tries to hide his hands underneath his highchair tray, hoping Mommy won’t notice and will do the work for him! “Hold your spoon, Benjamin.” He eventually consents. Most bites of oatmeal (or any food he particularly enjoys) are accompanied by his personal commentary of “Mmmm!”

Once breakfast is over, I clean up his face and tray, brush his teeth (which he usually thinks is funny), and we head into the living room for him to play. I already have an array of toys scattered throughout the living room to encourage his crawling. I sit on the couch with my coffee, Bible and journal and try to have some quiet time while Benjamin happily plays. Every few minutes at least he looks at me and grins, wanting to make sure I’m watching him. Music toys and balls are his favorite. He sets off one of his favorite songs and begins to bob his head up and down, dancing to the tune. He loves to dance! Musical toys, Daddy’s Scooby Doo cellphone ringtone, and Mommy’s guitar quickly incite his animated movement. Sometimes he dances when no music is playing, and I wonder if he is grooving to the tune in his head! Sometimes he creates his own music for dance, “Aaaa-aa-aa-aa. Aaaa-aa-aa-aa!” He also loves clapping hands and rhythm of any kind. He will often stick his hand in between my own as I clap out a rhythm for him. Maybe he will follow in my footsteps one day and play percussion (one of by biggest passions during my school years).

 After awhile, checking in with Mommy from across the room is not enough. Laughing, he makes his way toward the couch and attempts to pull-up. With a little bit of assistance he pulls to a stand and squeals with delight as I pick him up to cuddle. One of my first exclamations to follow is usually, “Nice touch, Benjamin!” This is an area we are working on. Benjamin loves faces and hair, and in his enthusiasm, he tends to grab, slap and sometimes claw the face in front of him or pull hair by the handful. He doesn’t mean to cause any harm; every ounce of him is expressing his excitement, but the results can be painful! I hold his hand flat and gently stroke it down my cheek while saying, “Nice touch. Nice touch.” He smiles and buries his face in my shoulder.  I cover him with kisses, and he laughs and squeals. He loves to make a “fake” laugh, “Ah-ah-ah-ah-ah-ah-ah” and get Mommy to mimic him. I say “Give me five!” at which he smiles and slaps my hand. After a few moments of cuddles, he’s ready to get back down on the floor and continue to play.

Before long, I notice him crawling to the basket of board books at the end of the couch. If I don’t notice fast enough, he lays down in front of the basket and begins his “fake” cry, “Ahaa, ahaa, ahaa!” or “Yaaa, yaaa, yaaa!” with right hand fingers in his mouth. “Benjamin, do you want to read books with Mommy?” I ask as I pull him into my lap. He places his hands together, palms up, making the sign for “book.” I pull out two at a time and hold them in front of him. “Which one do you want to read?” He pushes the rejected book to the side. Reading is one of my son’s favorite activities (granted that they are his familiar books. He takes a while to warm up to anything new). He especially loves lift-the-flap and textures books. I have most if not all of them memorized by heart, we have read them so many times. He could read, and read and read. When we reach the end of our stack, I have to try to quickly divert his attention to a new activity, or I am met with cries of protest.

When I’m ready to take my shower and get ready for the day, I pull out Benjamin’s blue Super Stand. When he sees it, he knows it’s time to watch a movie, and he’s ready! I fit his feet into his orthodic braces, pull on his shoes, and strap him into the stander. He smiles as I push him up using the hydraulic system and tell him “We’re going up, up, up!” He doesn’t like waiting for the movie to start; he never thinks it’s fast enough. Once I have one of his favorite shows going, he is content, and I head for the shower. His movies tend to run about 30 minutes each, so I will often pop in a second one, giving me a little more time to finish getting ready and to get some things done around the house. By the end of his second movie, Benjamin is ready for a break from the stander. As I lower him down and unstrap him I ask, “Benjamin do you want to take a bath?” while making the sign for “bath.” He smiles, knowing what this means.

As we head done the hall to the bathroom, my little guy is kicking his legs in anticipation again. He loves bath time! I set him on the floor by the tub while I start running the water. His eagerness is building. While I don’t particularly like that we have a carpeted bathroom (the house came that way, and we haven’t been able to do a remodel yet), I am thankful for it on the days when Benjamin wants to hurry me along in the process of getting him in the tub by simply falling backwards, letting me know he is ready for me to take his pajamas off! As soon as his diaper is off, he explodes into laughter as I say “Naked boy!” and set him in the tub. As the tub continues to fill, and I begin to pour water over him, he watches the faucet in fascination, cocking his head from side to side or sliding to his tummy to get a better look. (I am sure to keep the water level shallow to allow for tummy play). After scrubbing him with baby wash and rinsing him off, it is time to play with the big bath cup I use to rinse him. He loves it when I pour water in front of him. He places one hand and then the other into the flow. We play this game until my arm starts to get tired, and then out come the rubber ducks. He has three in particular that are his favorites. I use this opportunity to practice more signing with him. “Benjamin, are you playing with your ducks in the water? What does the duck say? Quack, quack! How many ducks do you have? One, two, three ducks!” or “Benjamin, are you taking a bath in the water? Are you playing in the water? Is it bath time? Are you getting clean in the water?” He absolutely loves it!

When it’s time to pull the plug, he slips to his tummy and watches the drain in fascination or continues to play with his ducks until I say “Are you ready to come with Mommy?” He reaches for me and laughs again as I transfer him from the tub to his towel and proceed to dry him off. Once a dry diaper is in place again, it’s time to put on his lotion. He laughs even more as I sing him the “Lotion Song,” set to the tune of one of his favorite Baby Signing Time songs. (Oh, the things that come out when you’re a stay-home mom)!

Lotion, lotion, lotion on my big boy! (I used to sing “baby”)
Lotion, lotion, lotion on my big boy!
Lotion, lotion, lotion on my big boy!
Lotion on my big boy!
I put some lotion on Big Boy B, so he will be soft and cuddly
I put some lotion on Big Boy B, and I rub it in his skin after bath time!

I dress him for the day and sit him up to comb his hair, his least favorite part. Though Benjamin loves to cuddle, he hates to have his hair messed with. I quickly comb through his hair, holding down his flailing hands and ignoring his grunts of complaint. It’s over soon enough, and I pick him up to admire himself in the mirror. “Look! There’s Benjamin! He’s a clean boy!” He smiles at himself, smiles and me (usually grabs my face again), and we head back to the living room.

Soon it’s time for a mid-morning snack. Using signs, I ask “Benjamin, are you hungry? Do you want to eat?” Those words always get his attention! Once settled in his high chair, I place a few handfuls of Multi-grain Cheerios on his tray, and he begins happily munching. He likes to play with them too, sliding his hand back and forth across the tray or kicking the bottom of the tray and watching them bounce. Between his play and messy finger-feeding, my kitchen floor is soon covered with Cheerios, as is my son. In fact, at times I feel my whole house is covered in Cheerios since I’m always finding stray ones in random places throughout the day!

Once snack time is over, it’s usually time for a nap. I lay him in his crib with his neon, multi-colored, stuffed gorilla (the only stuffed animal he seems to care for at this point), and turn on his little star projector that plays music.  On a good day, this is a smooth transition and he happily drifts to sleep--on a good day. On some days, Benjamin is convinced a nap is not a good idea, and he fusses in his crib until he finally gives in to sleep. There are occassional days, where his will is stronger, and I find him sitting up in his crib an hour later having never slept. These are rough days with an inevitable afternoon nap that often has to be cut short to head to a physical therapy appointment or some other unavoidable event. I look forward to nap times. This is my chance to catch a short nap myself if I’m feeling weary, spend some uninterrupted time with God, and/or accomplish something around the house that is more difficult to do when my little guy is up. Some days, he gives me a whole two hours!

I know nap time is over when I hear the familiar fusses rising from the nursery. After all that sleep, he’s hungry! (Did I mention that Benjamin really likes to eat?)! I usually have a scrambled egg with cheese and meat mixed in already cooked and cooled with a side of fruit or veggie. As I strap my son into his high chair again, he uses his “fake fuss” to try and hurry me along. Once his bib is in place, I ask “Benjamin, do you want to eat? Tell Mommy you want to eat.” He knows he must make the sign for “eat” before I give him his first bite, and he usually quickly complies. Since transitions tend to be hard for Benjamin, I am sure to warn him when I give him the last bite. Even then, the transition to his cup of diluted juice (really water with a little juice for flavor), is often a battle. As soon as my son hears “last bite,” his eyes get wide, and he may start to fuss while he still has the food in his mouth. When I offer his cup, he cries and waves his hand in front of him, trying to knock the cup away. “Ok, well you can sit there for a bit, because we’re all done eating.” Benjamin doesn’t seem to have a sense of when he’s full, and he will eat as long as food is offered to him. (At restaurants, especially, he is convinced that he should be eating the entire time we’re there)! After letting him sit for a minute or two, I pick up his drink and offer it to him again. If he still refuses, I will pretend to drink it, which he finds very funny. This usually does the trick, and he will then happily drink, giving a lively commentary of various sounds along the way. When Benjamin decides he’s done with his drink, however, he will often throw his cup to the ground; a behavior he knows gets him into trouble. The discipline usually involves a flick on his cheek along with a stern “No! Do not throw your cup.” He scrunches his face as soon as his cup hits the floor, knowing the cheek flick is coming. Upon hearing the “No” from Mommy, though, his little heart usually breaks, and he bursts into tears. He is very sensitive in this way, just as Shawn and I both were as children. This is the typical response, though there have been days when the discipline doesn’t seem to phase him in the least!

Benjamin is content to remain in his high chair for a bit after a meal. He chatters away and looks all around or watches what I’m doing in the kitchen. I like that he will sit for a while so his food can settle. His low muscle tone has contributed to problems with acid reflux, and the longer I can keep him upright after a meal, the better. This is a perfect opportunity to vaccuum if needed. Benjamin loves the vaccuum cleaner! When he’s particularly excited about something, every muscle in his body tenses; he sticks his legs straight out, his arms are held out in front of him, elbows bent and palms out, and he tightens every muscle in his face for a few seconds. It’s quite a sight! He is absolutely fascinated by the vaccuum cleaner and watches with wonder as I clean the rug under the table. I often wheel his high chair to the entry of the living room so he can watch me vaccuum there as well. I always get cries of protest when the noisy appliance is finally shut off and put away. What a funny guy!

Our afternoons are filled with more play, therapy appointments, or running errands. Benjamin enjoys them all (for the most part). Each week we have either his speech therapist or his child development specialist visit our home to work with him for up to an hour. We receive their services through an early intervention program called Sooner Start that is offered through the local health department. We have been receiving services since he was three months old, and he will be able to receive them for a few more months until his third birthday. What a blessing this program has been! Though Benjamin often fusses when they push him to work, he loves showing off for the ladies too. He knows when he’s the center of attention in any given situation, and he is usually more than happy to rise to the occassion! For the last nine months we have also been going weekly to the hospital to work with a physical therapist who specializes in pediatrics. She has helped Benjamin come so far in such a short amount of time. She really knows how to work him, but she knows how to do it in a loving and gentle way, and though he often protests the labor, he likes her very much!

Running errands is always a treat for Benjamin because he enjoys car rides and riding in a shopping cart. As soon as I strap him into a cart and start pushing he squeals with delight at the top of his lungs, announcing our arrival to the entire store! He puts his head down and watches the floor as we move along or twists himself around in the seat, trying to get a better view of where we’re going. He always draws some measure of attention and affection during our outings. Strangers come up to talk to him and pat his hand. I’ve even had some bold ones come up and kiss him! Benjamin is a people magnet and seems to brighten days wherever we go!

Afternoons go quickly, and 3:30 is the celebrated time when Daddy comes home. A few months after the birth of New Expression Church that we are pastoring, Shawn took a job at a local middle school as a special education teacher assistant. He is a para for a young man with cerebral palsy who is wheelchair bound. He wanted a job that required less evening time and less administrative energy so he could focus more attention on the new church. He really enjoys his job, and we all love that he is home in the afternoon, which is one of Benjamin’s prime times. Daddy usually walks in the door while Benjamin is in his high chair, yet again, for a small afternoon snack. “Benjamin, Daddy’s home! Where’s Daddy?” He smiles and happily looks to the door. He enjoys playing with Daddy, and his favorite game is to be tossed up in the air. He squeals with delight as his daddy tosses him and catches him over and over!

When it’s time for me to work on supper, Benjamin usually has some more time in his Super Stand with a movie. This also gives Shawn and me an opportunity to eat and talk before one of us feeds our son and the other does some cleaning up. If we have the evening at home, we may pull out Benjamin’s big yellow ball and sit in a circle in the living room. Benjamin loves balls, especially this one that’s almost as big as he is! He stretches out his legs and curls his toes in excitement, squealing and laughing and grinning from ear to ear. He grabs the ball and uses both his arms and legs to hold it in front of him, while he licks his tongue across the surface. Then he pushes the ball to Shawn or me, laughing again. We have so much fun! Sometimes, though, it becomes too much fun for his tired little body to handle, and Benjamin’s squeals of delight can quickly turn to fusses and tears if the stimulation becomes too much for him. Cuddles, books, and/or his evening cup of milk can be a good remedy if we get to this point.

A few evenings a week, we are down at the church for worship, prayer and teaching. Though our sleepy son will often express his discontent as his energy wanes, he absolutely loves music and the presence of God. Our church is small, with a family atmosphere, so Benjamin is free to play on the floor and drink his milk while the evening’s activity goes on around him. He often crawls and sits in front of our other co-leader and friend Myong and me as we play guitar. He squeals and dances and sometimes looks in awe at different spots around the room while we worship, as though he’s seeing something that is veiled to the rest of us. I am convinced that he sees angels at times.

Benjamin also brings a light-heartedness to things. At a recent prayer gathering, he was sitting in front of us as we played and sang, enthusiastically bobbing his head and legs up and down while lying on his stomach. His joyful motion brought an unexpected release of something not so spiritual, and soon I noticed a strong odor rising from my son. He may be little, but he can produce some very powerful stink! This was of the silent but deadly nature. I knew Myong smelled it too, and soon she burst into laughter, unable to play. I quickly followed suit, and between my giggles I explained to everyone else what had just happened. That got us all going, and soon the room was filled with wonderful, refreshing laughter. Benjamin didn’t realize he was the source of it all, but he smiled and laughed and looked around, happy to join in! I was sure that Jesus was laughing right along with us!

By 8:30 pm, our little guy is struggling to keep his eyes open. Whether he’s still fighting to stay awake or already asleep, one or both of us will gently lay Benjamin down in his crib for the night and pray a blessing over him. I love to watch his peaceful little face as he drifts off to sleep, and I wonder what will fill his dreams that night. I admire his beautiful features and feel thankful that he’s my son. I look forward to the days and years of watching him grow from toddler to boy to adoloscent to man, and I wonder what our relationship will look like along the way. I wonder at what things will mark his life and personality, and I hope and pray that Jesus is at the center of it all. I look forward to seeing the unique expression of God’s heart that Benjamin will bring to the world as it unfolds more and more in days to come. I look forward to seeing him be who he was created to be. There is so much more I could say about my sweet son, but I hope that my words here have at least captured the essence of Benjamin!