World Down Syndrome Day 3-21

Joy in the Moment

In April of 2007 I assumed I was pregnant with our fourth baby.  If nature took its proper course, I would be having a Christmas baby. Sure enough, the due date was set for December 11. I knew this would be the caboose.  We planned for four, this was the year that I planned to have number 4, and this would be just the planned space between numbers 3 and 4.  I also planned to have a little girl, a playmate for number 3 who was a girl.  So many plans…

Pregnancy and childbirth were easy for me.  Cliff tells me I shouldn't brag about this.  I might find myself clawed in the eyeballs by some poor woman who experienced every symptom in the book with a conclusion of 36 hours of labor.  Oh, I had morning sickness, and some crazy rash.  My back hurt…and still does!  But overall, good experiences, can’t complain.  Childbirth was so easy that I stopped using an epidural after number 2 and the OB started scheduling inductions because he was afraid I would give birth on my own.  He was probably right.  “So,” he chided, “don’t plan anything for the week before your due date and we’ll decide what day to bring you in.”  A planned delivery…

Around July it was time to have the blood tests you take midway through pregnancy to rule out any abnormalities.  This not being my first rodeo, I rolled up my sleeve, offered my blood, and bee-bopped my way out of the office without a second thought.  Two weeks later I was on the Fort Bayou Bridge heading back to work after lunch, trying to squeeze in a trip to Wal-Mart when my cell rang. It’s amazing the inconsequential details you remember when life takes sudden u-turns. 

“Mrs. Burris, do you remember taking the alpha-fetoprotein test?” asked the OB nurse.  Yes, I know I have pregnancy brain, but I do remember you sticking the needle in my arm. 

“Sure.”  Now my heart is starting to beat a little faster.  Is she about to tell me I am having twins?  (It tests for that, and in my secret heart I've always wanted twins…but as numbers 4 and 5?!?!?) 

“Well, your levels came back elevated, and sometimes that indicates a chromosomal abnormality, but you are so young and these tests come back with false positives all the time.  All the same, we want you to go to Mobile for some extra testing.  Mrs. Burris?  Did you understand what I just told you?”

 Uhm, I think you just told me that there may be something wrong with my baby, but MAYBE I DIDN’T HEAR YOU ON MY CELL PHONE IN TRAFFIC.  “Yes, I understand.”

 “Okay, well, you can call back if you have questions, but you will get a phone call from their doctor to schedule your appointment.  They will call soon though, because you will want the chance to terminate the pregnancy if something is wrong.  But I’m sure nothing is.” 

“Okay, great.”

I sat in the Wal-Mart parking lot.  Just sat.  I didn’t cry, scream, call anyone, I just sat.  I don’t know for how long.  I just didn’t know how to conduct myself in the next minute, so I let it wait for me.  Finally I got up the nerve to walk in the store.  A mother was fussing at her teenage daughter for being so slow.  The girl was willowy with wispy white-blond hair and she was standing in the flow of traffic with arms crossed and not moving.  Her back was to me, but the mother’s back was not.  The mother’s face was red with frustration and embarrassment.  Ah, Wal-Mart--the haven where I can always find someone with bigger problems than mine.  The thought skittered through my mind: “Well, whatever is wrong with my baby, we won’t have that problem!”  The girl turned and I saw the angelic features of a child with Down Syndrome.  I went home.  The next moment had to wait for me too.

I was able to tell my husband, my mother, and my pastor.  I couldn’t figure out how to tell anyone else, even my other children.  They laid their little hands on my belly and prayed, “Lord Jesus, make our baby strong and beautiful.”  I would cry and beg for it to be true.  Further testing revealed an otherwise healthy fetus so my OB decided not to talk about it.  I tried to make normal plans.

I chose to name the baby Joy.  I actually did not know if the baby was a boy or a girl.  I had found out with the other 3.  I wanted that storybook moment when the doctor said, “It’s a girl,” or “it’s a boy!”  Some days I would wonder what if…what if this baby is born with an abnormality?  What will happen?  What will I do?  My mind would spin with disaster scenarios, then the baby would kick and the Spirit would remind me, “Joy is within you.  Do not let life’s circumstances steal your joy.”  I would place my hand on my little Joy and tell sorrow and fear to wait a minute.  But, still, I did not talk about it. 

Sometimes I would go to websites or chat rooms for parents of children with Down Syndrome.  Those were terrifying places.  They reported that many individuals with Down Syndrome will also have other complicating conditions and life expectancy is only 60.  “I just couldn't keep my baby,” mother after mother wrote on the walls of those pages.  “I couldn't live with the pain.”  I would put my hand on my little Joy and turn off the computer.  I couldn't talk about it.  I needed a minute.

I bumped into families with Downs kids all the time.  Why had I never noticed before?  Was it a sign?  Or was I just sensitive, like seeing your car everywhere after you buy a new one?  The holidays were quickly approaching and I was growing past the cute pregnant size to the uncomfortable size when everyone wants to know when the baby is coming.  I still couldn’t talk about it, even with my husband.  I requested my maternity leave from the church where I preached; I planned to return after 8 weeks. I didn’t know how to make different plans. 

My last Sunday I offered communion to the faithful even as I counted contractions.  My husband went to work Monday morning and I stayed home for my first day of leave with our little girl.  She poured an entire bottle of bubbles on the bathroom floor then proceeded to slip down and hit her head on the tub.  I had to squeeze my huge self between the tub and toilet to rescue her and clean up the mess.  I put her down for a nap and cried, “God, I can barely do this with a normal child.  I can’t have a special needs child.  I don’t want a special needs child!”  I couldn’t talk about it because I didn’t think I should be saying that.  But there, I said it.  After a minute I collected myself and made gingerbread houses as planned.

 I went in for a 39 week check up on Wednesday.  There were magazines on the table in the waiting room and I flipped through a holiday one that gave cute ideas for decorations and cookies, and then I started to read an article about a family with four children.  Baby four came along with much joy and then, to their great surprise, he was born with Down Syndrome.  He had heart problems, vision problems, and diabetes, but he was the joy of their life!  I was horrified.  “Mrs. Burris, the doctor can see you now.”

 I lay on the exam table and watched my big belly roll with the kicks of a baby who has run out of space.  The doctor took several minutes to get there.  I was completely alone…me and the baby.  Unbidden tears leaked down my cheeks.  “GOD! How could you let me read that today?!  Didn't you hear me?  I don’t want a baby with special needs! This is not in the plan!”

In the next minute the Spirit spoke.  “Who do you think you are?  Did you make that baby, or did I?  I made you too.  You were born spiritually blind and I had to give you sight.  You were spiritually deaf to my voice and I had to give you ears to hear.  You were slow to speak, move, and obey my voice, and I waited patiently for you to respond to my love.  This child that you shun only demonstrates physically what I do for you each and every day spiritually.”

My spirit quieted and the doctor came in the room.  “Leanne, did you know you’re in labor?  Take yourself straight to the hospital.  We are having a baby today!”  I called my husband and my mother as I drove down the road to the hospital and checked myself in.

Three hours later I was pushing a new life into the world.  The OB hadn't talked to the nurses about the possibility of the baby’s abnormality.  I hadn't talked to the pediatrician.  My mom and husband knew, but we hadn't talked that day.

 But I had no more minutes.  With just two or three pushes the doctor was holding my baby and I was straining to see: was it a “Joy” as I planned, or would I need a new name?  “Well? Is it a boy or a girl!?”

 Suddenly the OB remembered, and the nurses realized, and my mother grew concerned.  “Oh… it’s a boy.”  It did not have storybook quality.  The little boy wasn't crying and a nurse was taking him to the other side of the room.  My mother rushed to the nurse’s side.  She looked at the bluish baby with great concern, then looked at me with reassuring eyes.  Maybe she didn't realize how small the room was.  The baby perked up, the OB was satisfied that I was taken care of, and he left.  The nurses took the baby.  My husband and my mother and I stared at each other.  We couldn't talk about it. 

Mama left to follow the baby and my husband asked if I thought the baby had Downs.  “I couldn't tell.  They are all so squished looking when they’re born.  Mama looked worried though.”  Hours later, nurses brought the baby to us.  “He is doing great!”  And he was.  They couldn't talk about it. 

Finally, late that evening the pediatrician brought me pages from one of those scary websites I had visited months before.  “Mr. and Mrs. Burris, we believe your son may have a condition known as Trisomy 21, or Down Syndrome. Had you made plans for this?” 

I was awake to see the sunrise the next morning.  “Okay, God.  So what now?  How do I proceed?  In a minute I have to engage this new reality.  Is there a plan?  What will we do?”  At that moment the nurses brought our tiny little boy into the room, crying for breakfast.  “What are we going to name him?”

  “Joel.” 

“Do not fear, O earth; be glad and rejoice, for the Lord has done great things!  O children of Zion, be glad and rejoice in the Lord your God.” Joel 2:21

It goes almost without saying that December 5, 2007 forever changed me.  Joel is a joy, both beautiful and strong. He is five now, and sticky, stinky, clingy, defiant, terrible two’s-three’s-four’s all in one glorious package.  But no one quiets my spirit like Joel.  When he sits in my lap and pats my shoulder with that stubby hand crossed permanently with a tell-tale palmar crease and lets that little tongue loll out ever so slightly, I know that every other plan can wait just a minute.  Together we sit and we talk about it.

A Prayer for Lent

Rabbi Eliezer ben Hyrcanus said, “When you pray, realize before whom you stand.”

Jesus offers a contrasting picture of pray-ers from a slice-of-life moment in the temple in Luke 18:9-14.

The first guy, a Pharisee, a leader in the religious community has found the appropriate place to pray; appropriate time to pray; appropriate posture to pray; followed the strictest code of the Pharisees to fast twice a week and give a 10^th of his income (even of his garden): he is perfect!  Except for one thing, he forgot to whom he was praying.

Dore Pharisee and Tax Collector

The second guy, a tax collector has found an awkward place to pray; wrong time to pray; improper posture to pray; never fasted or tithed: he is wrong!  Except for one thing: he offered his prayer to the right person.

Take note of the sins confessed and the sins forgiven.  The Pharisee believes he is free of sin, and has no need to confess any sin.  He has done everything required of him.  He has kept every law (which is really quite commendable considering the weight of the Jewish law).  He has lived righteously before all people.  No one could accuse him of any wrongdoing, especially hypocrisy.  His life is an open book, and truth be told he hopes all will read it.  Can we fault him?  Dare we fault him?  Fault him for what: praying too much, giving too much, fasting??? When was the last time I fasted, much less twice a week?  This guy is a model citizen! You would want your children to act like this guy, want your daughter to marry this guy.  Well, maybe, because she would soon learn what Jesus seems to already be aware of: the one sin this guy is guilty of is the one he failed to confess--pride.

Now, that’s not to condone the other guy.  The other guy is, well, a sinner.  He admits it.  Based on his occupation, he is probably prone to committing all the sins known to money.  Greed, cheating, using, consuming, wasting.  Of course I’m just guessing, or perhaps confessing.  Whatever the case, this guy is not going to be elected president of the Kiwanis of Greater Jerusalem.  But he seems to have one thing going for him: self awareness-- I’m a sinner.

Jesus isn't telling this story to teach that God likes heathens better than religious folks.  It’s just that the opposite isn't true either (although it’s often assumed).  Nor does God like religious folks better than heathens.  Truth is, God our father, likes us all the same.  Jesus is telling the story because he wants those of us who classify ourselves as heathens to take a deep breath and trust the grace of God.  The roof of the church isn't going to blow off just because you came in the door.  I promise!  Jesus is also telling this story because he wants those of us who classify ourselves as religious folks to take a deep breath and trust the grace of God.  That’s right.  Religious folk, like the Pharisee of the story and the Pharisee in me, do a good job of trusting our religion.  I put my faith in my good works.  I put my faith in good choices.  I put my faith in my good name.  I put my faith in my goodness.  And that gets us about as far as…well, our sin.  There is no faith that saves outside of our faith in Jesus’s redemptive work.

This Lent you are invited to observe a fast, go on a journey, take account of your days.  I would specifically ask you to observe a fast from religiosity, go on a journey with the tax collector to the altar of humility, and take account of all that Jesus has done and is willing to do for you.  

And pray like this: God, have mercy on me, a sinner.

Milemarker~Joshua Zion is twelve years old

Josh #12; Jon #61

...which means I have been parenting for some 12 years, nine months...give or take a week.   Reading this post will require you to travel down memory lane with me and remembering some of my favorite Josh moments...to know him is to love him.

When Josh and Jon were in preschool they became consumed with acting out some of their favorite Bible stories.  They saw the children’s movie Prince of Egypt and were very inspired by the drama.  One afternoon I caught Josh playing in the yard with no shoes.  This irks me.  Either put on your shoes or take off your socks.  My preference, because we had dogs in the yard, was that he put on shoes.  I told him as much. 

“Josh, put your shoes on, please.”

“Mom, I can’t.  The Lord says I’m standing on Holy Ground.” 

This Easter outfit had a tie at one point.

Another afternoon, close to Easter, I went out to find all of their superheroes (Batman, Superman, Flash, Incredible Hulk) laying on the driveway.  I assumed there had been a nuclear disaster on some alien planet far, far away and went to investigate.  Upon closer inspection I realized that each hero was laying atop a little pile of sticks. 

“Josh, what are you doing?  Are they getting burned?”

It was then that the neighbor walked over.  He had been doing yard work and had come over to investigate the scene a little earlier.  “ They've been crucified,” he explained.

I looked again and realized it was true.  Each hero was carefully placed on two perpendicular sticks.  They had crucified their heroes. 

“What happens now?”  I really wanted to know.

“Now Jesus saves them.”

Jedi cowboys with swords

A few weeks later I caught the boys tying ropes around each other and leading each other through the yard.  I went to intervene.  I assumed they were playing cattle drive or something like that.  But we have a couple of non-negotiable rules in our home.  Rule number 5 is that we keep our promises…to each other, to our friends, to our baseball coach, to our teachers.  Rule number 4 is we use our words in kind ways and we don’t hit girls ever.  Rule number 3 is we take a polite bite of our food and we say thank you for food, even if we don’t like it.  Rule number 2 is we go to church on Sunday and we participate with the Holy Spirit.  Seem to hit most of them?  What could rule number one be?  Burris Family Rule #1 is (and I do not lie)  "no ropes around the neck."  This does not have a dramatic story to go with it, and it may seem to some to be a bit of an overkill (pardon the pun).  But it became obvious as boy number 2 became mobile only 14 months after boy number 1 there would have to be preventative measures taken if they both were going to make it to adulthood.  (You know, of course, that goal number one of parenting is keep them alive.)  So Burris Family Rule Number 1 (this is how we refer to it…regularly) is “no ropes around the neck.”  I realized on this afternoon I would have to expand the rule to no ropes around the waist and I was trying to decide if I would include no ropes around ankles and wrists and heads or just take the rope away (my sister says I could make fewer rules if I were less specific and more pro-active…she was very critical the day I said, “Please don’t cut your sister with the knife at the table.”  My sister doesn’t have kids yet).  Then I was close enough to hear their dialogue.

“Take him to the cross!”  Josh exclaimed this to an unseen guard.  Jon, with imaginary bindings on his wrists and a lowered head stumbled behind his big brother in pretend agony.  Josh then loosened the rope and mimicked nailing Jon’s hands and feet to an invisible cross.  After a moment Josh lowered the now relaxed body of his younger brother to the leafy ground and dragged him to the swing set.  Jon lay still for a moment then rose to his feet and walked toward Josh with his arms raised.

“Okay, Jon, my turn to be Jesus.”  And the re-enactment started over again with roles reversed.  I let them keep the rope.

The game was called “Take Him to the Cross” and they played for weeks.  My sister said they were getting too much church.

Josh is a warrior.  We named him Joshua Zion because we wanted to claim God’s promises for our future family that God would fight for us.  We did not have to be afraid, only believe.  We would choose, our whole household, to serve the Lord.  We believed that the Lord is Zion’s champion and we wanted “in” on the promise.  So our first little blond-haired, blue-eyed, Protestant, southern baby boy was named Joshua Zion.  He was born with a warrior’s heart.  It used to bother my mother that he was constantly fighting with sticks.  He never hit anyone, but he swung sticks like his life depended on it.  She bought sword after sword: plastic, Styrofoam, retractable, glow-in-the-dark, rubber.  It didn't matter.  Oh, he would swing those too.  But sticks worked well enough.  He is twelve now and still carries a stick.  We find sticks in our cars, bedrooms, tucked into corners, on the porch, under furniture…he stores the good sticks. Albert Einstein said,"I know not with what weapons World War III will be fought, but World War IV will be fought with sticks and stones." Josh will be ready.  He’s never been in a fight.  Well, okay, he has scrapped with his brother plenty and has had to put up with sister brawls.  But this warrior-child has never, ever lifted a hand against a friend or enemy…nor has he been hit by someone else (which says something of its own).  He talks to us a lot about the violence in the world.  He creates stories in which those who are violent are put down by warriors who don’t love violence, but use force to stop it.  He loves action/adventure movies: Star Wars, Pirates of Caribbean, The Hobbit and The Lord of the Rings, Marvel Comics, X-Men, GI Joe, Transformers, Chronicles of Narnia…he loves it.  He loves war stories.  He can discuss generals, battle plans, dates, and strategies from the Civil War, the Alamo, and World War II. He has a copy of the Preamble and the Declaration of Independence hanging in his room…next to the Marvel Comic poster.

 He recently was confronted with a situation that frightened him:  a new class.  Our family moved mid-year.  He had a new school, new home, new church, and now was expected by his preacher-mom to go to a new 5^th and 6^th grade Bible study.

 “No.”

 That was his final word.  “Punish me however.  I won’t go.”  Did I mention Josh is a stubborn warrior?  After several moments of frustration on my part, I decided to stop focusing on my needs in the situation and discover his.

 “Why Josh?  Why can’t you go in there?”

“I’m afraid.”

“I understand that.  I have been afraid, too, moving to this new place.  I think you’re doing a great job.  Hey, can you think of someone in the Bible who was brave?”  I figure Josh is going to pick Moses or Joshua or David…his favorite warriors.

“Jesus was brave.”

“Wow.  He really was brave.  Can you think of a story of when Jesus had to do something really hard or that he was afraid to do?”  I assume at this point we will talk about Jesus dying on the cross.

“I think it must have been really hard to let Lazarus die.  Jesus could have healed him, but he needed to let him die so the other people could see the miracle.  It really hurt Jesus’s feelings because he cried.  I think it took a lot of courage for Jesus to just let Lazarus die.”

Josh is a warrior serving the God-of-the-Angel-Armies.  He did not get punished for missing Bible study that night.  I don’t know if Josh was identifying more with Jesus or Lazarus that night.  The next week he found the courage to go in.  

Gifts of Epiphany

 Have you ever gotten a gift that you wondered, “what in the world…” on Christmas morning, but found months later it was the best thing you could have not asked for? 

I have to think that was what Mary was thinking as the Magi from the east made their way out of her modest home that evening.  Imagine the scene with me…

Jesus, probably around the age of 15 months toddles from around his mother’s skirts to get a better look at the strange men who have appeared at the door.

 “We have come seeking the king,” they claim.

 “You’re off by a few miles, buddy,” comes the short reply from Mary’s neighbor.  Obviously strangers, the well-dressed, travel-worn wise men ask permission to enter Mary’s home.

 “Please, let me ask my husband to come in,” she may have quickly stalled.  After making sure the men and their animals have something to drink and a place to sit a moment, she scoops “the king” into her arms and rushes to Joseph’s wood shop.  She doesn’t make it all the way there as he has already been told of the strange visitors.

 “What do they want, Mary?  Do they mean harm?  How could they possibly know anything?”

 “I don’t know, Joseph.  They don’t seem to mean any harm…their words were, “we have come to worship the king.”  But I don’t understand how they found us…him.”

  At that moment the “leader” of the group rounds the corner.  “I don’t mean to startle you, nor do I mean to eavesdrop.  But I can understand your concern.  I hope you believe me when I say we certainly did not expect to disrupt your little community as we had no idea we would find him in such…humble surroundings.  We traveled first to Jerusalem, assuming he would be among the royal families.  Imagine our surprise when the star kept moving, bringing us to this…quaint village.”  Though kind, the man’s words are unmistakable, even if they do align with Mary and Joseph’s thoughts:  what is the Messiah doing here??

The star.  Just another one of the mysteries surrounding Jesus.  There had been so many…so many steps of faith.  Joseph had stopped trying to figure it out.  A man could go crazy trying to figure out the mind of God…especially when that man is tasked with feeding the mouth of God.  Mary seemed content with all the mystery.  Perhaps having the mystery grow inside of her changed her somehow.  They had wondered at the star that seemed to follow them since the night of Jesus’ birth.  But asking anyone would have started a conversation they were unprepared to finish.  So they were left to wonder…one of the questions they would ask this son of theirs…once he learned to talk.

Now the other travelers joined the tiny family in Joseph’s shop.  Even more rudimentary than the house, but certainly quieter. (Not that there would be any way to stop the gossip train in this small town.)  The travelers explained their discovery, their journey, their desire to worship Messiah.  Their knowledge…almost greater than Mary and Joseph’s…certainly gave credence to their story, and the couple found themselves wanting the men to stay.  They were the first since ancient Simeon and Anna to join Mary and Joseph in their astonishment over the coming of Israel’s Redeemer.  But probably more startling than the visit, were the gifts the men left when their visit came to an end: gold—the gift for a king; frankincense—the gift for a priest; myrrh—the gift for the dead and dying.  These were not traditional “baby gifts” at all…but then nothing about this baby had been traditional.

It was no wonder none of them could sleep that night—their minds were spinning!  Gold for a king! Almost laughable in Nazareth!   Even Jesus seemed restless as Mary tried to bed him down.  Finally, heavy eyelids drooped and dreams began to swirl through busy minds.  
“Joseph!” 
 Joseph was becoming old-hat at these angelic dreams!  “Gabriel!  Good to see you!  Pull up a chair!”
  “Joseph!  The baby is in danger.  Take him and his mother to Egypt tonight!  Joseph!” 
 Joseph sat straight up in bed.  A dream?  A nightmare?  As he glanced to make sure that Mary and Jesus were safe in the bed his eyes caught Jesus’ big brown eyes.  The tiny boy seemed to be begging Joseph to believe, act in faith, obey!  It was all the push Joseph needed. 
 “Mary, get up.  The wise men were sent to warn us…Jesus is in danger.  No time to pack Mary, we have to go now.” 
 Mary, who was quickly learning, as the mother of Messiah, to improvise, threw together the baby’s needs first, then a few things for Joseph and herself.  Her eye caught the pouches, material more expensive than her entire wardrobe, filled with the precious minerals and spices.  She unbundled the clothes, dropped the pouches inside, and quickly retied the pack.  Joseph brought the donkey (not that beast again, thought Mary) and they were off.  Quietly, quickly, miraculously, the tiny family who had just created quite a stir in the neighborhood disappeared into the night not to be heard from again for years.

I can’t imagine the fear that must have swallowed the parents with each step.  Will they find us?  Who is chasing us?  Who can we trust?  If we make it to Egypt, how will we live?  How will we care for Jesus?  How will we eat?  How will we worship?  So many questions to join the list.  If I am supposed to take care of God, who is going to take care of me?

We sometimes scratch our modern heads at the gifts of the wise men as well.  We like to joke that wise women would have brought more practical gifts…a casserole at least.  I know what I would do with gold, but I would struggle to recognize, let alone utilize frankincense and myrrh.  But think about this:

.  What would gold mean to a family having to flee their hometown overnight?  What would myrrh, with its medicinal properties, mean to a family struggling with poverty and unable to secure healthcare?  What would frankincense, a holy treasure offered in the temple, mean to a family who had no access to the temple because they could not afford the proper offerings (already gave doves…a poor man’s gift). 

What seem like silly, wasteful gifts to us are actually practical, provisional gifts.  And just in time!  It’s like God was in control or something…

And what if He is?  Even in the overwhelming task of parenting the Son of God, God’s very presence brings gifts of provision.

Can we believe the same thing for our lives today?  Has God given you a vision, a mission, a purpose, a responsibility?  When we are tempted to believe that birthing God’s vision is an impossible task, first can we stop to see what provision he has made, what unexpected gifts grace our lives?

What do you have in your hand?  What has God given you? 

What does it say about our (1) faith (2) gratitude (3) ingenuity to claim “I don’t have what I need.”

As we enter conversations in 2013 about who we are, what we are to be about, and who we are to serve, let’s first pause with gratitude for the abundance of gifts that God has blessed us with.

Mile Marker~ Happy 5th Birthday Joel!

Joel at Disney's Castaway Cay

Joel entered our lives on a cold (for South Mississippi) December day 5 years ago.  By the time we made it home from the hospital, the weather had completely changed...and so had we.  We had been told that there was a possibility that Joel would be born with Down Syndrome.  After several inconclusive screenings, plus multiple reassurances that the fetus was otherwise developing in a healthy manner, we stopped testing and started waiting.  On the day that he entered the outside world, we had all but forgotten that the possibility existed   As a matter of fact, the OB/GYN had forgotten and failed to notify the OB floor staff...they were quite surprised!  I remember the day of Joel's first sunrise.  I prayed, wondering how we would ever adjust to this new reality.  Everyone assured me "everything will be fine."  I didn't understand how they could say that.  Then sweet Joel snuggled into my arms, and my warmed heart understood, "everything is going to be fine."  A warm front came through our area and the temperature was twenty degrees warmer.  Nothing in my suitcase was appropriate for me or the baby.  I would need to adjust...that was 5 years ago.

I've learned so much from Joel in these 5 short years.  It would take more than a blog to share it all.  Maybe one day I'll write the book.  But for now, a lesson for each year...

Joel completed his first soccer season this year

1.  Take Your Time Another mom I know with a most handsome son toting extra chromosomes refers to "Noah-time".  She is referencing how patient one must be because her son will arrive/finish/move/go/sit/stand/speak/leave at his pace.  Joel is the same way.  Some days, we don't move fast enough for Joel.  But most days, there is a methodical pace that I must choose to take if I am to walk hand in hand with him.  Because holding his hand is absolutely one of the most precious gifts in my life, I choose his pace.  Oh sure, there are days he gets swung onto my hip, or onto Dad's back, or onto brother's shoulders, or into a stroller to move a little faster.  And he enjoys the ride (see smile and celebrate below).  I have learned to love this new pace, however.  I had learned a different pace, one conducive to mothering 3 small children, being a part of a clergy couple where both of us worked full time in a large church, and still volunteering throughout the community.  My stride was long, my heels clicked the floor with purpose, my arms pumped the air as blood pumped through my veins with ever-increasing urgency.  I was going places!  It wasn't until Joel took my hand and slowed my step that I realized I was missing the journey.  Joel took his first steps at 20 months, nearly 10 months after his typical peers.  Although he has had physical therapy most of his life and wears braces on both ankles, his gait is still a bit awkward and slow for his age.  Me too.  I've been practicing this new pace for only 5 years.  There are still days that I rush right past the most important people to get to some incredibly important meeting *or so I thought*.  Joel's gait will get stronger, more stable.  I only hope I can grow as fast as he.

Joel hunts for a Christmas tree

2.  Listen to People As a pastor, I do a LOT of listening.  Word to the wise: having the opportunity to do a lot of listening doesn't necessarily mean you are a good listener.  For several years I worked as a children's pastor in a large church.  I remarked after my first quarter that every kid there had letters: ADD, ADHD, ODD,  AS, ASD...I had a perfunctory conversation with each mother: "How can I help your child's experience within our ministry be a positive one?"  I was proud of myself for asking.  I felt like I implemented as many of the suggestions as were practical.  Then we got letters: DS, TS21, SPED, PT, OT, SLT...I remember the first mom I went back to and said, "Tell me your story again."  I wasn't listening for a certain set of pre-determined answers that fit my to-do list.  I was listening for her voice, the voice she gave her child, the wisdom she had gained from learning his pace, the hope I could muster from warriors like her.  Joel's speech therapist started coming to see us around his first birthday.  His typical peers had already mastered 50 words or better.  His older brother was speaking eloquently by 12 months.  Joel had no words.  The therapist reminded me of the importance of speaking to Joel, reading to Joel, exposing Joel to lots of language because he was listening.  And slowly he would begin to process sounds, then words, then ideas, then language.  But I had to listen to him too.  Repeat his sounds.  Mimic his expressions.  Engage in "conversation" with him because he needed the encouragment to keep trying.  How many people around me have "lost their voice" because the world stopped listening and no one has encouraged them to keep trying?  I never get tired of hearing Joel's sweet voice.  Okay, exaggeration...sometimes he makes these horrible sounds: yelling, crying, screaming.  I get tired of that.  Those sounds stop when I listen, attend, help him solve his problem.  Then, the sweet voice comes back: "mymama" is my name.  "Iuhnyootoo" is I love you.  I am learning to listen.

Joel enjoys a little yogurt

3.  Smile My 4 children have been blessed with beautiful smiles.  My oldest son has the smile of an angel.  He is absolutely beautiful.  My second son has the smile of mischief.  His smile assures you that you wish you knew what he was thinking!  My daughter has the loveliest of smiles that melts our hearts.  Joel's smile is pure joy.  You have to smile back.  I have friends whose children also sport the extra chromosome who tell of their child's uncanny ability to recognize the hurt souls in our midst.  I heard one mother tell the story of her son entering a restaurant with them.  Upon entering, they quickly recognized a fellow church member who was known for her critical words and overbearing spirit.  They quietly requested to be seated in another part of the restaurant, not wanting to hear the scathing comments she would surely make about their son's poor table manners.  Their son saw her too, recognized her immediately, and went and sat in the empty seat at her table.  You see, she was alone.  She was a widow, and no doubt her bitterness came from a broken heart.  My friend's little boy sat with this woman for his entire lunch.  Joel seems to have a similar affinity for those who need a smile.  He has an easy way of placing his hand on your shoulder and rubbing your back.  He seems to know who in the room needs him.  Joel's smile brings joy into a room, but he won't leave until everyone in the room is smiling with him.

Super Joel

4.  Forgive Easily Like all toddlers, Joel has had to be taught to say "I'm sorry" when he hurts someone.  He can pack a mean punch!  Because his words don't come as quickly as his friends' words, he often resorts to pushing, pulling, and hitting to get his way.  (But really, who doesn't??)  When we witness this behavior, we intercept the action, telling Joel he can't hit and now he must say sorry.  "Isorree" the words come out slurred together.  His head is usually tilted downward, eyes peaking out from under long eyelashes to see if you accept.  And a hug.  Joel can't apologize without hugging you.  This is so endearing about him, even his sister can't resist him.  But what is most precious is when he is hurt by someone else, and that person offers an "I'm sorry" Joel goes through the same procedure...almost apologizing along with the offending child, hug and all.  It's as if Joel feels forgiveness no matter which way it is being extended.  The only person I've ever seen Joel hold a grudge against is a nurse.  She was quick to forgive him...knowing how many times she had stuck the poor baby!  I think Joel's smile comes so easily because his list of offenses stays so short.  I would do well to do likewise.

Joel gives Donald a kiss

5.  Celebrate Joel loves mascots: Chickfila Cow, Sweet Pepper Pepper, Santa Claus, Easter Bunny...loves them.  But his heart belongs to Mickey Mouse.  That's why we were all so excited to take Joel to Disney World where he would meet Mickey Mouse and Friends.  Joel's favorite show is Mickey Mouse Clubhouse.  At the end of every show, the friends do the "hotdog dance" to celebrate their accomplishments.  Joel has perfected this dance...and uses it appropriately.  Chicken nuggets for dinner: woo hoo! hot dog dance.  Extra ice cream: woo hoo! hot dog dance.  Papa is coming over: woo hoo! hot dog dance.  It doesn't matter if you're in the kitchen, at church, on the cereal aisle at Rouses, any place is a good place for the hot dog dance.  Joel celebrates easily.  Of course, I love finding reasons for him to celebrate.  But really, he finds them more easily than I do.  He reminds me that life gives us hundreds of reasons every day to celebrate if we're looking for them.  And oh, to really celebrate.  Not just a mental acknowledgment that something is swell...but a foot tapping, arm waving, voice lifting celebration.  Joel teaches me to regularly celebrate what is good.  He teaches me that good can be found in a lot of insignificant things.

When we brought little Joel home just a few weeks before Christmas, I knew we had some major adjustments to make in life.  I just mistakenly believed they were about my lifestyle.  I've learned the major adjustments happened in my heart.  Thank you Joel, for the gift of you.  I love you, and I love being loved by you.

  

What to get the kids for Christmas

Educational toys have been trending for Christmas for many years.  My youngest son has weekly occupational therapy.  A note came home saying he worked on "visual motor perception."  My oldest son asked what that was.  "That's what gives you the ability to play video games and sports."  Oh, I got that, was his reply.  I think many of their toys...nerf guns and nerf balls...handheld games, kinect games...work on visual motor perception.  Is that enough "education" for the holidays?  And the point of educational toys, at some level, must be be to assuage the guilt we feel over spending too much money on kids who already have too much stuff.  What are teaching our kids at Christmas?

So I don't want to get on my high horse here.  I really want to have a conversation with the parents of the world who want their children to learn to believe that the world is...

The World is God's, not mine.  I believe that the world was created by God for God's glory.  We humans are a part of that creation.  Because God created the world, the world belongs to God.  God gave humans a special role in world stewardship.  Stewardship is different than consumption.  Imagine a friend leaving a plate of cookies on the table.  The friend asks you to watch the cookies, they are for his niece.  He offers to share with you, with the clear understanding that there must enough left to share with his niece.  He leaves to get her.  You devour all the cookies, break the plate, dust the crumbs to the floor, and then mock the little girl for her tears when she finds her cookies gone.  The friend asks what you were thinking, and you offer some rigmarole about "early bird gets the worm."  Of course, now your friend thinks you are a worm and his niece is ready to feed you worms.  Too simplistic?  Probably.  But I want my children to understand that the world is not theirs to consume and waste.  It is only theirs for a season.  I fear my generation may have not learned our lesson.

The World is a beautiful, fearful, wonderful, strange place.  Because the world is God's, God has left his fingerprints in all of creations.  I love the little idiosyncrasies of creation: like your forearm is the same length as your foot; a widow's peak is genetic, just like rolling your tongue. I believe that God has given free will to humanity.  And we have devoured the cookies.  "Alas and did my Savior bleed and did my Sovereign die.  Would he devote that sacred head for such a worm as I?" Isaac Watts wrote that line in the 1700's.  God has allowed us to do unthinkable things to His creations (especially to one another).  He in turn has created a plan of redemption for the whole world.  I want my children to take their own adventures in the world, but I want them to trust the God of Creation, not the tainted creation.  Learn to trust, but learn to trust what is true, strong, and good.  Then they will be prepared to accept the world's strange and fearful ways with grace while appreciating and loving the world's beautiful and wonderful ways.

The World is loved by God.  And I want my children to know that this includes them.  For God loved the world so much (that world that devoured his cookies) that he sent his only son (closer than a niece) so that whomever believed (trusted, acted upon faith) that Jesus is the Son of God, would not die (become worm trash), but would have eternal life (zoe...life found only in God).  And I want my children to know this includes their perceived enemies, just as Jesus said.  I want the reservoir from which they love to be deep.  My wish, my blessing for them is that deep waters of grace and love will flow in their souls.  May they have the capacity to love all because they are loved by the Author of Love so completely.

The World is a better place because of Jesus. Jesus has transformed the world.  Jesus will redeem the world.   I want my children to believe that they have the power to transform the world for good through the love of Jesus.  

So what gift teaches that?

Mile-Marker: Sweet 16

Next week Cliff and I will celebrate 16 years of marriage.
A hard won 16 years in some respects.  A sweet victory to be sure.


We met 18 years ago while attending William Carey College (now University).  I was a sophomore.  He was a transferring Junior.  I was giving a talk at the Baptist Student Union the first weekend of school.  He was listening.  He came to me at the end and said, "Can I give you a hug?  I love you!"  I should have thought he was weird.  I thought he was cute.


A couple of months later he called to ask me out on a date.  Well, it's a bit more complicated than that, but that's what it was: a date.  December 11, 1994.  If he wants to contest the date, he can write his own blog!  A year later we were engaged.  A year after that we were married.  November 23, 1996.  He won't contest that.  Our first kiss was our wedding kiss.  Yes, our first kiss.

Saints Superbowl Season

Your Kiss

Let him kiss me with the kisses of his mouth. Song of Solomon 1:2

The first one was gentle and timid,

pregnant with promise--

Promises kept and promises to come.

The veil was lifted

And two hearts were joined to one future.

The second one was quick and stolen;

Charged with exhileration--

We were sustained by the electricity around us.

Wrapped in lace and pearls,

It was a gift between new lovers.

The third one was long and sensuous;

Teeming with new life,

It gave birth to our new passion.

Like waters drenching the earth,

This kiss brought forth all that is now familiar.

The next one will be sure and sweet,

Abundant with memories and possibilities.

Whether speaking hello or goodbye,

It will say one thing:

I love you.

If marriage is meant more for our holiness than our happiness, then I am doubly blessed.  I have the privilege of doing life with a man who cares about my holiness and my happiness.  Cliff is my best friend, my theology buddy, my sweet date, the guy in my dreams.  Cliff isn't perfect, but that just means he doesn't expect me to be perfect either.  He is on my team, he is for me, my biggest fan.  He lets me shine and never relishes outshining me.  He receives my fears, my dreams, my frustrations, my hopes, my weaknesses, and my strengths with grace. I trust that I come into his presence forgiven; I promise that he comes into my presence forgiven.   He is the most loving, thoughtful, playful, affectionate, strong, protective, directing, smart, funny, kind, forgiving Daddy any little boy or girl could want.  He sings songs of love over us.  We, our children and I, know that we can venture into the world in the direction of God's voice with the confidence that this man is on our team. He is our hero. Of course, we share him with people who love him too. He is fiercely faithful to his family...loving his grandmother, praying for his cousins, being a son his parents are proud of.  It is the joy of my life to minister beside him.  His compassion, sense of justice, passion for Jesus, and love for God's True Word inspires me constantly.  I love to hear the words of praise people offer as they encounter Jesus in Cliff.  Cliff, I love you.  I like you.  I choose you.  I am completely yours.  Happy Anniversary.

Easter 2012