What I've Learned at Buddy Walk

This weekend we will walk in our 6^th Buddy Walk, an awareness event for Down Syndrome.  Buddy Walks are held across the country this time of year to raise public awareness about Trisomy 21 and the community it affects.  But for me, Buddy Walk has become a classroom.  Here are some things I have learned at our annual Buddy Walks.

1. 1. Everyone can walk.  Our first year walking, we were invited to walk with another team.  The family we joined had been walking for five or six years, they had successfully pulled together teams of walkers, and had been instrumental in coordinating this huge community event.  I was so thankful that they adopted us in and let us experience Buddy Walk as members of the community and not as spectators.  I think that defines what I really want for my child.  I want him to live life, to contribute all of his beautiful gifts to his community.  I don’t want him to be a spectator in life, I want him to be a team player. At the time of his first walk, my little guy should have been taking his first steps.  It would be another year before that actually happened.  Fortunately, we had a great team of therapists who were undeterred: Joel would walk.  Unfortunately, we’ve already encountered  other situations where the immediate assumption is that he will ever only be a spectator.  People immediately want to define what he can’t do.  In reality, a “you can’t” attitude isn’t just applied to kids sporting extra chromosomes.  All of us have been told at some point, “you can’t.”  Which is why we all need cheerleaders, encouragers who say, “oh yes you can.”  Everyone walks at Buddy Walk.  Or rides or runs.  Little ones are in strollers, wagons, and on daddies’ shoulders.  Kids and pets run laps around walkers.  But eventually there is a single movement forward, and everyone is included.
   
   
   
   
   2. No one has to walk alone. For two years our family joined this other precious family.  Not just at the Buddy Walk.  In the walk of life.  The scariest moment in any of our lives is to think we have to face our struggles alone.  But nothing could be more false.  We were created for relationship.  And there is a family that has been created for each of us.  Some people are not born into great families, and they have to find a forever family.  Some people are blessed to find family everywhere they go.  Most of us experience a little of both.  The worst thing we can do to ourselves is hide in our fear and isolate ourselves.  Find a buddy.  The most amazing thing happens when you choose to walk beside someone: you look beside you and find someone walking with you.
   
   
   
   
   3. Long walks are better with friends.  Our third year we decided to venture to the Buddy Walk on our own.  Joel was in preschool and we invited his whole class to participate.  They made a banner for him and put their little hand prints on it.  Then we found out that a little friend in his class wanted to walk with us.  This little boy was a typical child, and was developing at an amazing rate.  He had a huge vocabulary and great athleticism, even at age 2.  Joel was walking pretty well at this point, but not talking yet.  He signed most of what he needed to communicate.  His speech therapist was trying to locate things in his world that he wanted to talk about.  Asking him to indentify random pictures just wasn’t working.  At this point he needed objects that produced “hard guttural stops” to talk about, words that start with K, hard G, or hard C.  And so we started talking about our new buddy Cole.  Every skill Joel develops is a hard won effort.  We’ve learned that these long roads of mastery are best mastered one small step at a time.  What a joy it is to find friends along the way that make the time pass, that give us joyful things to talk about, that celebrate not just the end, but every step along the way.
   
   
   
   
   4. Learn to walk your walk.  Two years ago the location of our Walk changed.  We went from making several laps around a track to one lap around a field.  I had no idea that the change would be noticed little baby Joel.  But while thousands of walkers stopped their stride to find easy rest under shade trees and tents, Joel kept walking.  He made another complete lap completely by himself, then content that his walk was now over, rested with his team.  While we need and celebrate all of the support around us, each of us has to find the personal courage to walk our own walk.  I can only be me.  Joel can only be Joel.  We’ll be miserable if we are trying to be someone we are not.  But if we learn to embrace who we are, to embrace our own stride, our own footprint, even our own meandering paths, we will discover the great strength our Creator has given us to be just who we are.
   
   
   
   
   5. Learn to appreciate another person’s walk.  Last year I again made the attempt to invite lots of people from our community to join our little team.   I was so honored that several families joined “Joel’s Heroes”, but I was most blessed to walk beside Carla.  Carla had already been to a walk that morning, a walk to “Make Strides Against Breast Cancer.”  It was pretty amazing that she would participate in two walks in one day.  It was absolutely inspiring to realize that the first walk was for her.  Carla had been fighting cancer in one form or another for most of her life.  She lost her leg during her childhood and walked with a prosthesis.  She lost her hair during the most recent battle with cancer and sported a gorgeous blonde wig.  Carla’s body had been ravaged by the disease and its treatment.  Her gait was wobbly and slow as she moved along with the Buddy crowd.  But, whose wasn’t?  Everyone on Joel’s team was so inspired by her walk with us.  I would learn over the next few months just how inspiring of a woman she was.  Carla’s physical body lost its battle to cancer this past spring.  Carla’s spirit was triumphant against cancer as people came from near and far to celebrate her life and marvel at this little woman and her strength and poise until the end.  I suspect we will have many more years of Buddy walks and I will appreciate every member of the team.  But I will never forget the year that we walked beside Carla.
   
   
   We are almost ready for our Buddy Walk this year.  We’ve had family come join us from across the country.  I’m not sure if Joel knows that all of this is for him or not.  But I believe he knows that we are for him.  And he has a team.  And each of us walks a stronger walk for being a member of team Joel.

Sermon series on RESPECT

Life is precious

I have a confession to make.   A few weeks ago I had to go to Walmart. HAD to go.  It was one of those lists that only made sense at Walmart   And I said as much to the kids.  They were incredulous at my attitude…”Mom! It’s Walmart   Don’t you love Walmart  You can get anything there!”  Never mind Disney World, just take my kids to Walmart.  “No,” I confessed to them, “I don’t love Walmart   Those aren't my people.” And there it was, the confession of my heart. When it comes to Walmart  I’m a snob.  Not that it keeps me away that much, a lot of my life happens at Walmart.

I was actually heading to Walmart six years ago when the nurse called from the Obstetricians office.  I was heading down highway 90 in Ocean Springs as she explained that my blood levels had come back abnormal and I would need to undergo further testing to determine if the baby I was carrying had a genetic abnormality.  “These things are usually false positives, but we will get the test done soon enough so you can terminate the pregnancy if needed.”  It’s amazing the details you can remember about the moment your life changes completely.  I sat in the Walmart parking lot for quite a while.  When I finally went inside, there was a family having a family moment right at the door.  Ahh, Walmart  the place you go to feel better about your problems.  The mother was facing me, and she was furious, that much was evident.  The daughter had her back to me, but she was obviously not doing what her mother wanted.  She had some school supplies clutched in her crossed arms and she was shaking her head vehemently.  My hand instinctively went to my growing waist, evidence of a half-completed pregnancy, as the unbidden thought entered my mind: “whatever problems this baby has, we won’t have that problem.”  It was that moment that the girl turned and her face revealed the delicate features of Trisomy 21, Down Syndrome.  All at once the weight of the nurse’s words and the fear inside my heart came crashing down.  I won’t take the time to tell the rest of our story, but if you’re interested, you can read more about it here.

Today, I want to talk about life.  Fragile, crazy, beautiful, scary, hard, precious life.  In our series on respect, I want to begin with the preeminent value of life.  Without life, all of our other arguments are null and void.  Now, before you gather all of your arguments about life and choice and equality and all the other political buzz words we’ve attached to the word, I’ll just go ahead and give you my bottom line.  I’m not interested in changing your opinions today.  I don’t believe myself to be that persuasive.  However, I would like to encourage you to consider your opinions, whatever they may be, from this perspective: God is the author of life, and God believes that all life is precious.  That’s the bottom line. 

^{Psalm 139 (CEV)}

¹³ You are the one
who put me together
    inside my mother’s body,
¹⁴ and I praise you
    because of
the wonderful way
    you created me.

Everything you do is marvelous!
    Of this I have no doubt.

¹⁵ Nothing about me
    is hidden from you!
I was secretly woven together
    deep in the earth below,
¹⁶ but with your own eyes
    you saw
    my body being formed.
Even before I was born,
you had written in your book
    everything I would do.

And while applying that lens to your perspective on life, would you prayerfully consider doing this as well: would you be willing widen the margins on your definition of life to make room for the mystery of God?  So many debates get bogged down in the quagmire of when life begins and ends, and how we are to treat others at various stages of life.  The reality is, we don’t know what we don’t know.  We think we know what we know about life, but even what we know about life changes all the time, but for sure, we don’t know what we don’t know.  So it would seem to foolish to assert that we know something about what we know we don’t know.  Did you follow that?  Here’s what I’m trying to say: widen the margins.  Make room for the mystery of God.  However you define life, would you be willing to say, in regards to those margins, “and maybe a little more, because I don’t know everything.” 

What is the value of a life?  Our judicial system has a formula for applying value, based on the ability to earn income and other mitigating factors.  At premium, life is worth $7 million.  That is preceded by the statement, life is invaluable.  We may be confused.

According to science, life is worth $90.  Let me explain. 

One day, a science professor had set out several vats of different-colored liquids, gases and pyrex boxes containing elemental solids. Nitrogen, hydrogen, oxygen, carbon, mercury... a few other elements that the human body is composed of, all in proportion to how much of each element could be found in the average adult human body. Each container had a sticker on it, the price tag, as dictated by the supplier from whence these elements were bought. At the far end of the table upon which all of this stuff sat was a folded card, like a tiny tent of paper, and on that piece of folded paper, standing up like a marquee, was the sum total of each price. It read:

"The cost of human life, in raw materials: $83.72"

 The professor picked up the card, showed it to the class and said:

"This is what the human body is worth, if you were to go out to the store and purchase the materials necessary to build one. But there's more to it than that, isn't there? You can't just take these things, mix them up in a bowl, slap them in the oven and, nine months later, wind up with a human being. It takes much more than that. These items must be arranged in a certain way, at the molecular and cellular level, and manipulated to a degree that it would boggle the mind.Genetics, cellular mitosis, osmosis, molecular replication... these are some of the processes by which a human body develops." He waved to the elements behind him. "All these things are inert, by themselves, but something is added to make them dynamic and singular. Kids, I'm going to tell you this once and once only: the human body is cheap, dirt cheap in the grand scheme of things, but the quality that gives a human body life is something neither science nor money can ever measure. You're here to learn how science works and how it can be applied to learning how things work, but it can only work up to a certain point. At that point, we must stop and wait for science to catch up. The saying that life is precious is true only in that the human experience which validates that life is invaluable. We cannot put a price on experience. You can pay for some experiences, but that is only a fiction of economics. Life is more than just your body and mind. And science cannot even begin to comprehend where life begins and where it ends. That task is best left for the philosophers and dreamers. If you came here looking for answers to life, then you're paying a significantly steep price for answers that will get you nowhere. Or, at least, your parents are."

(borrowed from the internet, unable to verify the source...however I am currently working to verify the facts and I should be able to update the cost this week...fascinating!)

So how will we define life? Value life?

Before we can begin to wrap our hearts and minds around the value of another person’s life, we have to deal with the reality of our personal value.  I’m not talking about the superficial, selfish choices we all make to bring pleasure to our physical life.  I’m talking about who we are, who we really are, our purpose for existence   Because people who understand their value, their purpose, they live differently.  Remember our lens from which we peer today: God is the author of life, and to God, life is precious.  Your life is precious.  The promise is for Abundant life and then eternal life, not miserable life and then you die.  We mistakenly believe that with Jesus we will always have either happy life where nothing bad happens, physical blessings abound like Christmas, and the sun always shines; or conversely we believe that with Jesus we will live a sad, depressed, gray, never fun uber-fundamental doldrum existence and then die and sleep in the clouds.  But we’d be wrong on both accounts.  Jesus came to show us that while in this life we will know trouble, but we can be bold, courageous, joyful, and peaceful because Jesus has overcome the world.  Jesus didn’t just come to earth to provide train tickets to heaven.  We don’t get our card punched and then wait for that glory bound train, all the while wasting away here in the shadow-lands without joy or peace in the midst of suffering.  On the contrary, Jesus lived a human life, a tough one to be sure, full of friends, joy, parties, tears, relationships, memories, experiences, humanity.  And Jesus’ life proves that your life is precious, and worth saving. 

Why would God step out of heaven, and wrap himself in flesh if not to demonstrate the value of human life?  Why would Jesus suffer the indignities of acne, gas, and in-grown toenails?  Why would God put himself through the misery of human inter-relationships?  Why would God choose to become human?  Could he not have saved us any other way?  Could he not have spoken through the mountains, the storms, the birds, the beasts?  But he became a baby, a teenager, a man.  His very painful death happened to a real human body.  Why?  Because, to God, who created life, life is precious.  It’s worth rescuing from the pits of hell, but it’s also worth rescuing from the doldrums of human existence.  What are you doing with the life God has given you?  Do you live on purpose?  Do you live understanding the price God paid to redeem your life?  Do you care?

Once we get our heads and hearts on straight about the value of our lives, we also have the capacity to appreciate the value of all life.  This is hard work.  It is one thing to value the lives of those we love, who are kind or good to us, or who society has deemed “valuable.”  It is quite another thing to extend the merits of value to every individual.  We measure, we weigh, we find others wanting.  And we forget that when we devalue the life of one human, we devalue the life of all humanity. Your life is precious.  Their life is too.  We must widen the margins and believe God has purpose for every being he creates.

Their life is precious.  God loves her, and him, and all them at Walmart  He probably wishes they would pick up some new undergarments while at Walmart, but He loves them.

My invitation to you this week is to serve life where you find it to be most precious and vulnerable.  We

confuse politics and faith quite often in these discussions.  We convince ourselves that we can convince others to believe our beliefs by yelling louder or raising more money for our politician.  But if we examine the actions and attitudes of Jesus, we will find that he didn’t press for political reform.  He pressed for heart reformation.  How do we change a human heart?  Love.  It all comes back to love.

Are you bothered by issues regarding the beginning of life?  Then the love the most vulnerable people on that front.  Serve them, pray for them, hug them, provide shelter.  Are your issues with end of life debates?  Then do the same.  Serve, pray, touch, provide.  Are you most concerned with fragile humanity caught in the undertow of bureaucracy and politics?  Don’t scream and shout…you will be never be heard.  Serve and love…and you will break down walls.

And if in the midst of serving and loving and touching and being touched, you find the margins on your definition of life expanding, all the better.  You know, before life was a game, a magazine, a cereal…before life was messy and hard or grand and a bowl of cherries…life was in God.  God loves life, God is life.  When you love, serve, touch life, you touch, serve, love God.

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.

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.