Thursday, March 21, 2013

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.

1 comment:

  1. Thank you for continuing to share your messy and beautiful story Leanne. :)

    ReplyDelete