Esther Call 2012

On Good Friday I drove to Dallas, TX with some other ladies from our church to attend the Esther Call 2012. Women from all over the nation were called to come together to fast and pray to see the ending of abortion in America. The event lasted over 9 hours as hundreds of youth and women, young and old lifted our voices as one and cried out for mercy in our nation. Countless more were joining in around the world through the live web stream and God TV. It was a powerful time! For 21 days prior to the event, a group called Back to Life held a walk in which 39 women, representing 39 years of legalized abortion in America, marched from Houston to Dallas in what has become known as the "women's trail of tears." They started from the largest Planned Parenthood facility in Houston and marched to Dallas, where Roe vs. Wade first came into effect. Many of these women were post-abortive and have lived with the pain and regret of the child/children they lost. Some were scheduled to be aborted, but their mothers chose to give them life instead. Some have had family members lost to abortion, and some just have a burning passion to see justice for the unborn. These women shared their moving stories and were honored at the Esther Call.

The Esther Call was given its name in remembrance of Esther of the Bible. An orphaned Jewish girl, she was raised by her godly uncle Mordecai in ancient Persia, where the Jewish people had been captives for several decades and had only recently been given the freedom to return to their homeland. By the Lord's favor, Esther rose from obscurity to become queen over a nation that was not even her own. When a death decree was issued over the Jewish people living in Persia, Esther was in a position of influence to stand in the gap and fight for their liberty. She fasted and prayed, petitioning the King of Heaven before risking her own life to go unbidden before the king of Persia to intercede for the lives of her people. God's favor rested on her, and she ultimately saw deliverance for the Jews.

They gave the call for modern day "Esthers" to rise and stand in the place of influence that has been given to us by the blood of Jesus. We have access to the courts of heaven to fast and pray and petition our King, Who will grant us favor. We are also called to be a voice in our nation and to stand in the gap for an entire generation that is being silently murdered on a daily basis in the name of "convenience" and "women's rights." Our true "right" as women is to be life-givers, and this is more than just having children. We are given the responsibility and the privilege of calling forth the destinies in the generation coming up behind us. My heart breaks to think of the estimated 54 million destinies that have been lost since Roe vs. Wade, and the numbers continue to mount.

During the assembly we had intense times of worship and intercession, either corporate or in small groups. There was both personal and corporate repentance. There was an emphasis on healing the hearts of women by the grace and forgiveness of Jesus Christ and a cry to see the restoration of true identity and womanhood that has been so attacked by the culture we live in. We petitioned the courts of heaven to bring an ending to the atrocity of abortion that would usher in revival in our nation. As one voice we declared that "Children are a blessing from the Lord!" And that is true of every child!

It is overwhelming to me that, according to statistics, over 90% of women would have chosen to abort my son, had they received a prenatal diagnosis of Down syndrome. Over 90%??!!! Benjamin's life is such a gift. He was in the heart of Jesus before the creation of the world, and he has a unique calling and destiny intended for him alone. He is able to express the heart of God in a way that no one else can, and that is true of each and every person ever born. Do we really know who we are and the significance we carry? Today I am thankful for life, even as I grieve for the lives that were never given a chance. Today I am thankful for the blessing of my child and the privilege of motherhood. Today I am thankful to be a woman loved by the King.

Mr. Mobile

It felt like one of the longest waits of my life. I remember when Shawn’s dad D.J. came to visit shortly after we brought Benjamin home from the hospital the first time. He was just barely two months old. His heart surgery was only days away. Before reluctantly leaving to head back to MN, D.J. said “He’ll probably be crawling around when we see you at Christmas.” Knowing that our little son would only be 7 months old by that time and that he would experience developmental delays, I responded, “Well, maybe not this Christmas, but definitely by next Christmas!” After all, Benjamin would be 19 months old by that point. I couldn’t fathom him seeing his first birthday before he was crawling around. However, before we knew it his first birthday had arrived, and not only was Benjamin not crawling yet, he wasn’t even able to sit up without moderate assistance. We purchased him a Bumbo seat and used it as long as we could, but he was really too big for it in the first place. It’s not designed for a one year old. One year olds are typically long past the need for that type of intervention and are instead toddling around.

 I remember our first few visits to the Down Syndrome Association of Tulsa meetings during Benjamin’s first year. We saw a couple of two year olds who were up and walking around. I remember thinking, “That’s not so bad. At least we have a better idea of when he should meet his milestones.” However, we were not anticipating all of the medical complications Benjamin would face in his first few years. By the time we had reached our son’s first birthday he had faced: premature birth, extended respiratory distress, jaundice, kidney failure (all those just within the first week of life), open heart surgery, double hernia surgery, infantile spasm seizures, an MRI of his brain, ear tube surgery, and the diagnosis of permanent mild/moderate hearing loss the literal day before his birthday. (Nearly two years later, though, God would demonstrate to us giving us great joy that nothing is permanent unless He says so!) In the following year and three months he would also undergo two eye surgeries and a short stint with glasses to help correct his eyes that had been crossing horribly. His Down syndrome aside, all of these complications resulted in significant developmental delays for our son, especially the seizures. We are so thankful that Jesus healed him of these, as in time they could have caused permanent brain damage and even more extensive delays. We are still praying for the restoration of what was lost for him during those few months.

On top of these things Benjamin was born with very low muscle tone, and he was born very big. Low muscle tone is a common trait associated with Down syndrome. We have been told by more than one therapist that Benjamin’s muscle tone is on the low end of low. Upon feeling his legs for the first time, one therapist remarked, “You want to make sure we know that you have Down syndrome!” I feel like I should interject a story here with this in mind: When Benjamin was in the hospital following his open-heart surgery, Shawn and I visited a church where we had previously attended some weekend conferences. It was our first time to attend a regular Sunday morning services. As a gesture of love and welcome, first-time visitors are invited to go to a separate room at the back of the church after the service in order to receive personal prayer ministry. Shawn and I were desperate for encouragement. At one point while the ladies assigned to us prayed, one of them kept hearing the phrase “strong trunk” run through her mind. She had no idea what it meant. We knew exactly what it meant! We had already been told by medical professionals that it would be critical for Benjamin to develop good trunk support because most of the body’s movement is dependent on its mid-section. We have held on to that word for a long time!

Any way, back to his size. Benjamin weighed 7 lbs, 6 oz when he was born, in contrast to an average birth weight of 5 lbs for a full-term infant with Down syndrome. Ever since than he has  been at the very top of the Down syndrome growth charts or above them! While his bigger size may have benefited him in some ways as a new born, his size combined with his low muscle tone it has created another hindrance for mobility.

When Benjamin was 14 months old, he was finally able to maintain a sitting position by himself. We were thrilled! However, he was not able to get himself in and out of this position, and he was so used to being dependent on us for most things, that he wouldn’t even reach for a toy that was placed a short distance away from him. He was able to play with many of his toys more effectively, but his personal independence was still very limited. Shawn and I worked at trying to help him crawl, but it felt like he fought us every step of the way. Benjamin was never really a fan of tummy time, and that’s a nice was of saying it! He was primarily confined to his back for his first three months of life because of his medical conditions, and by that point he wanted nothing to do with being on his stomach. We tried positioning him to bear down weight on his hands and wrists, but he would just bend his elbows, collapse on the floor and fill the room with his cries of protest. Trying to position his on his knees created very similar results.

One day I saw an on-line video of a mother using a string of Christmas lights to motivate her son with Down syndrome to crawl. So, we pulled out the Christmas lights. Benjamin was very intrigued by them, but he did not appreciate the process that would follow. I would kneel on the floor and keep them just out of his reach while Shawn would bend one of Benjamin’s knees and then the other, helping him push off Shawn’s leg with his little foot to propel him forward inch by inch on his belly. Sometimes the lights were enough of a distraction to make it a few feet. It didn’t take long, though,  for Benjamin to have our little scheme figured out, and he wanted nothing to do with it!

Before we knew it, Benjamin’s second Christmas had come and gone, and there was still no indication that we would be crawling any time soon. I cried many tears over this one. Some days the grief and anger would rise up so strong. Why did my son have to have so much stacked against him? Why did this all have to be so hard for him?  He didn’t look like an infant, but developmentally he was still so much of an infant. It felt like I was getting asked questions all the time of “Is he crawling yet?” (There was one old lady at church who literally asked this almost every week). “When is he supposed to crawl?” I felt so helpless at this point, and people’s questions of concern only seemed to fuel my frustration. At the same time I was being faced with the reality that babies who had been conceived during my son’s first year were up and crawling around, even pulling up to stand, while my child was still just rolling around on the floor. I tried to step back from time to time and re-gain perspective, “He will crawl one day,” I would tell myself. “He will not only crawl, but he will walk and talk and play. This is only a season.” Oh, but how long would this season last!

Shortly before Benjamin’s second birthday, he started receiving additional physical therapy at our local hospital. We have been blessed with a therapist whose has extensive experience and who’s job is not just her “job” but her life’s passion. A few weeks after his birthday, Benjamin finally made the breakthrough of being able to get in and out of a sitting position, and a whole new world of freedom and independence opened up to him. It was thrilling in a very bittersweet way. When I had expected a toddling toddler, I had a very big boy pushing with all his might to get himself upright, but I was so proud of him! Soon he was doing it so naturally, it was hard to imagine the months of struggle that had preceded this new milestone. I continued to pray as I had for the last year and a half that my son would soon learn to crawl.

By this point Benjamin had also started pushing up some on his hands and arms, but he didn’t know how to get his knees under him. He was becoming more tolerant of having assistance in this area as we practiced holding him on hands and knees or placing him in a tall kneeling position up against low furniture with a favorite toy as motivation. We could tell he was gaining strength, and we were so encouraged! Overall he was a happier boy, and his personality was emerging more and more.

Then one typical morning, (July 18, 2011 to be exact) Shawn and I were sitting in the living room sipping coffee and reading our Bibles as Benjamin played on the floor. Suddenly, using his arms and one leg, Benjamin started moving himself forward on his belly to reach a toy that he couldn’t get to otherwise. At first we could hardly believe what we were seeing! Our son was FINALLY using a form of crawling! It was so amazing yet so surreal. We had waited and waited and waited, and it was finally starting to happen! In the days, weeks, and months that followed, he became faster and more proficient at his little army crawl. He was a different kid! His fussyness began to subside bit by bit as he took more self-initiative and embraced his new independence. It was so exciting to see! We continued to work on getting him up on hands and knees and holding him at his hip bones to help him rock back and forth. It became one of his favorite games. I would say, “Hey, Benjamin, let’s rock!” He would start to get up onto hands and knees and rock back and forth with my assistance (which he started needing less and less) as I would chant, “Rock, rock, rock! Rock, rock, rock! Rockin’ baby Benjamin. Rock, rock, rock!” He loved it!  

By his third Christmas, he was started to take a few paces here and there with a traditional hands and knees crawl before reverting back to his stomach. He also started pushing up on his hands and feet into a bear crawl position. He loved and still loves to hold his head upside down and look between his legs. It’s adorable! Since January, he has been traditional crawling everywhere, and he is fast! He is much braver than when he first started crawling, and he loves to explore the whole house. It’s difficult to keep him contained in one room for very long. He’s got places to go and things to get into! As with all of his previous developmental breakthroughs, Benjamin is crawling so naturally it’s a wonder that the wait was so long and felt so hard. There’s not a day that goes by that my heart is not warmed at seeing my son crawl around, even when I wish he’d sit still just for a little while!

During the months and months of waiting, some people would try to make me feel better by saying, “Oh, just you wait. When he does start crawling you’ll be sorry.” Those comments never made me feel better. I would usually respond, “No, I am more than ready for him to crawl. I will celebrate when he crawls, even if it means more work.” There has never been the fraction of a second that I’ve felt sorry that my son is crawling. Yes, I have had to be on my toes more, but it is worth every moment! The unavoidable “inconveniences” of a busy baby is as nothing compared to the pain of his extended delays.

Benjamin has just recently started pulling up to stand at furniture. The familiar emotions of longing for my son to crawl have transferred to a longing to see him walk. Benjamin’s third birthday is just around the corner. He is currently at least three feet tall and weighs over 30 pounds. While his crawling has saved me from having to carry him everywhere, I still have to carry him a lot. I am a tired mama! At the first baby shower we had for Benjamin, we received two small picture frames, one that reads “First Smile” and the other that reads “First Step.” They are both on display in his room, one with a sweet picture of Benjamin smiling at his daddy and the other sitting empty, waiting for the day it can be filled.  I remind myself that, just like the crawling and like so many other milestones that we have worked and worked for, Benjamin will walk, and I believe that he will walk well in time. As with the crawling, the wait feels long and hard, but it’s encouraging to know that it’s only temporary. Keep moving forward, Benjamin! Mommy and Daddy (and many others) are cheering you the whole way!

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!
Energetic
New accomplishments
Joyful!
Adorable and amazingly awesome!
Made in God's image
Inspirational and irresistable!
Needs lots of kisses and cuddles

Loved, loved, loved!
Enjoyable
Enthusiastic!

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

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!

Today, I'm Tired

Today, I'm tired. I'm tired of strapping my son into his Super Stand to hold him in an upright position, especially when I think of all of the children one year old and younger who are both standing and walking, unassisted. Today I'm tired of carrying my son around so much. My arms and back ache from his 30 lbs of mostly dead weight (due to low muscle tone) and his 3 foot frame. I just want to hold his hand and let him walk by my side. Today I'm tired of hearing only gibberish from my son's mouth, when I long to hear even the simple word "Mama." I'm tired of being so limited in my communication with him. Today, I'm tired of the current limits of his play and fine motor skills. An attempt to help him color with crayons today was loudly protested. He wanted nothing to do with it. I always dreamed of the pictures my toddler would color for me that could be proudly displayed on the refridgerator. Today I'm tired of the limits in our interactive play. There is no make-believe, no mimicking what Mommy and Daddy do. When I was Benjamin's age, I loved to play pretend games. I loved to do the things the grown-ups did. I don't even know if my son has the cognitive capacity yet for creative play. When will it come? Today I'm tired of having to plan our weekly schedule around physical therapy appointments and doctor visits. Today I'm tired of feeling so isolated from the other young families we know who have "typically-developing" children. This is not to say that people are not kind and understanding; they absolutely are, but they still can't really understand what it's like. I feel like there is a gap between us that cannot be crossed. Today I'm surprised by the fresh wave of grief that hit me so unexpectedly. I wasn't prepared for the tears that began as a trickle and quickly became a torrent. I'm sure there will be more waves to face in the years to come. It's a process of healing, and often new transitions open up new wounds. Benjamin's only a few months shy of turning three. He does show many characteristics of being a toddler, but in many of his abilities, he's still stuck in the baby stage. Today I'm very tired of the baby stage, (though I still long for another one)!  Today I'm tired of not knowing what it's like to have a typical child. I've grown to appreciate Holland, but I still long to visit Italy too. Tomorrow I may feel different. Tomorrow I may be so excited and encouraged by the huge strides Benjamin has made in his development over the last several months. Tomorrow my heart may brim with pride as I watch him crawl and play and roll his ball back and forth with me. I may smile as he happily crawls to me as I say and sign "Benjamin, do you want some milk to drink?" I may applaud him as he signs "eat" before I let him take a bite of food and encourage him as I hand him his spoon, and he brings it to his mouth. Tomorrow I may laugh as I hear his contagious laughter, and he tells me in his own distinct ways, "Mommy, I love you!" There's some language that doesn't require words.  But today, I'm tired, and today my heart is hurting. But no matter how tired I may feel, I will never be tired of loving my son.

True Value

One recent morning, Shawn didn’t have time to pack his lunch before leaving for work, so I called later, offering to run one by the school for him. He happily agreed, then called back asking me to bring it by the old high school gym instead of to the middle school where he primarily works. It was the weekly practice day for the Special Olympics, and students from elementary through high school would be bused to the gym to take part in the exercises. Shawn works as a Para for a 6^th grade boy who has cerebral palsy and is wheelchair bound. He is a great kid with a delightful personality, and I love hearing Shawn’s stories each week about their interactions at school. They make a good team! I was excited that things were timed so perfectly; I had wanted to check out one of the practices since he’d told me about them a few weeks prior. I quickly put together Shawn’s lunch, got Benjamin ready and headed to the car. I couldn’t wait to meet the little boy he works with after hearing so many stories. I couldn’t wait to see all of the children and teens participating in the practice. I couldn’t wait to see Shawn proudly show off his son to the students and staff. I was eager to see how the Special Olympics practice was structured, as we have every intention of encouraging Benjamin to participate when he is old enough. I was confident that I would feel right at home in this setting. After all, I am the parent and primary caregiver for a child with special needs. Speculations can never be proven as reality, however, until they are tested, and I was to be surprised by how I scored.

Benjamin fell asleep in the car shortly before we pulled into the school parking lot. Shawn ran outside to meet us, and, since it was cold, he grabbed Benjamin and ran back inside while I followed behind with the stroller, diaper bag, and his lunch. The cold air and sudden motion woke our son up, and he was not pleased to be whisked away to an unfamiliar setting when he wanted to be napping. He was cranky from the start. Shawn’s little guy from school was waiting for us right inside. I was happy to meet him and asked him playfully, “Are you keeping Shawn in line and making sure he behaves himself?” He laughed and said softly, “No, he keeps me in line.” I liked this young man right from the start, but my heart hurt at seeing firsthand the level of his physical disability. As I held Benjamin in my arms he said, “Sometimes I miss being that small.” I was dumbfounded.  I managed a laugh and asked, “Do you remember being that small?” He quietly replied, “No,” and I wondered what would cause a 6^th grade boy to miss the dependency of being a toddler? I realized, though, that he has experienced very little independence in his life because of the complications of his condition. All he’s known is dependence.

We made our way into the gym, where most of the students were sitting on the bleachers, waiting for their turn to race, one of the first activities of the day. Most of them were excited to see a small child, and many gathered around inquisitively. Shawn proudly made some introductions and tried to walk around with Benjamin, but by this point he was overwhelmed by all the new people, the noise and the unfamiliar environment, and all he wanted was his mommy! I held him and comforted him and tried to answer the student’s questions.  A teenage girl whose speech indicated her cognitive disability kept insisting to see him again. At one point she stated she wanted to hold him, but I ignored her request, knowing it would not go well. I didn’t want to admit it to myself, but I felt uncomfortable in her presence.

As I looked around the room, I saw many levels of disabilities. There were a few other children with Down syndrome; one in particular we had met on more than one occasion. A small number were wheelchair bound-some with limited use of their limbs and some completely invalid. There were students who had no apparent disability until they began to speak, as was the case with the teenage girl who was so fascinated by Benjamin. Due to my son’s cries, I had to leave the gym and few times to try and calm him down, but I hoped to watch some of the morning’s activities. I was able to watch Shawn’s little guy slowly wheel himself part way across the gym and then around some orange cones that Shawn set out for him. It took him a long time, but staff and students were cheering him the whole way.

I finally got Benjamin calm enough to sit on the first bleacher right inside the door, but it didn’t last long. During the few minutes we had, I watched a couple of the races, as students ran across the gym three at a time. Though many were slow and their movements were awkward, they received cheers and affirmation from the crowd, and it was evident that they were enjoying themselves. I was able to watch the little boy with Down syndrome whom we know race against two other boys, one who also has Down syndrome. He ran his little heart out and left the other two boys trailing behind. Which one will Benjamin be? I wondered. Will he enjoy the Special Olympics or will his interests center elsewhere?

I felt such a mix of emotions as we sat there. I wasn’t as prepared as I had expected to see so many different disabilities up close. I thought I would feel at home, but instead I felt misplaced and out of my element. I know Benjamin has Down syndrome; I witness firsthand the disabilities and delays that he experiences, probably more than any other person. However, first and foremost, he is my son. I know him, and I am comfortable in knowing him. I did not know these other children, and I was ashamed of the discomfort I felt in their presence. I reflected on how each one was someone’s son or someone’s daughter, loved and valued just as I love my son (if all is as it should be). I silently prayed that God would give me eyes to truly see the beautiful people filling the room. I realized that as Benjamin grows, this will in time become an increasingly familiar community to us. I wrestled some with that reality, a small tinge of grief piercing my heart. It was another reminder that life will look different with our son than what we’d once envisioned.  I wondered, What does it look like to bring the Kingdom of God to these ones? I want my heart to truly love them.  

I didn’t take long before Benjamin was wailing again, so we went and said our goodbyes to Shawn and headed home. I reflected in the car as we drove, and I’ve reflected more over the days since this experience. I’ve had many thoughts. I’ve thought about the value and beauty of a human life. We live in a culture where appearance and personal achievement is highly valued and sought after, worshipped even. In the midst of such propaganda and pressure, do we remember to simply value people?  Benjamin may never take first place in a race or any other event. He may come in dead last, even at the Special Olympics. Will either outcome or the many possibilities in between alter the level of pride and amount of value I place on my son? While there is a place for taking pride in our children’s accomplishments, I don’t want it to be based on how he “measures up” to those around him. I want my son to know that his Dad and I are full of pride for him, simply because he’s our son. I want to cheer him on with enthusiasm as he runs this marathon called life, encouraging him to do his best and to be who he was created to be.

 I also thought about how much needless emotional and mental energy I waste when I critique whether or not I’m “measuring up” to those around me. My Heavenly Father doesn’t compare me to others, so why am I so quick to compare myself? He loves me simply because I am His. I thought about how much I can learn about the Kingdom of God from the special needs community, a community comprised of so many unique individuals, each with their own beauty to offer the world. I want to see Jesus in the faces of the ones the world calls unlovely. I want to be reminded of Him in the ones the world sees as forgotten. I want to give and receive His unconditional love that is never based on performance and is only experienced through relationship. I want to value what He values.

Unconditional Love

Even though I had to give him a stern “No” a few minutes ago for throwing his cup, Benjamin crawls towards me, smiling and laughing, eager to crawl up into my lap. He is fully confident and fully expectant that he will be received with hugs and kisses. His mind is not on the recent discipline but on the love he knows his mommy has for him. He comes to me at any time of the day, no matter what is happening or who is around, wanting and expecting my attention and affection. . . and he gets it. Benjamin doesn’t analyze his behavior over the day to determine whether I will receive him or whether I will hold him at arm’s length. He doesn’t try to find ways to “earn” back my favor after being disciplined. He approaches me with laughter and with joy, or with tears and the desire for comfort; either way he is confident he will be received with love and acceptance. 

This morning Father God ministered to my heart through the simplicity of my sweet son. As I love my son, I get a small glimpse into the heart of a loving God. As I write this, I am listening to the live webstream from the International House of Prayer in Kansas City. The worship team has just broken into spontaneous song. A young woman sings "What a Father You are! You never reject us or turn us away. Though our fathers and mothers reject us, You never turn us away." I'm listening, Daddy! You are speaking! I cannot conceive of ever rejecting my son. Yet, my love is still an imperfect love. There are wounded fathers and mothers in this world who do reject their children, whether intentionally or unintentionally. In my imperfection, Benjamin will probably experience feelings of rejection from me at some point in time, though that is never my desire. But not so with Father God. His love is perfect, unconditional, and constant. Love originates in Him and finds its ultimate fulfillment in Him. It does not stand to reason that my love and delight for my son could be greater than the Father's love and delight for me. It does not stand to reason that He would give me affection for "good" behavior and withhold it for "bad" behavior. His heart is always for me; His affection is always extended to me. Like Benjamin, though, I have a part to play. I must be willing to come to Him with simple trust and love, confident that I will be received. I will be loved.