THE STORY OF A DOWNS SYNDROME CHILD


MADE IN GOD'S IMAGE

 

The birth had been perfect and now before them, still connected by the umbilical cord, lay their first child, a daughter, Jos.  Their dream had become a reality.  The long awaited, much cherished life was here.

Justine studied his little girl's face.  “Debbie, I think she's Downs.”  The statement came calmly.  Debbie looked at her tiny features.  Her eyes seem just a little too far apart.  “I think she might be,” Debbie answered, surprised at the tranquility with which she had replied.  Within them both was a knowing.

The doctor who had delivered her spoke.  He disagreed with their opinion.  Their own doctor, who visited later, also disagreed, but thought it prudent to have her checked by a specialist.  An appointment was made for two days' time

The next two days Debbie held and fed her little girl, stroking her, loving her, stimulating her.  “It was as if the Lord had given me an incredible insight from the start as to what she needed.  Without knowing it, I was doing everything right,” says Debbie of that special time of bonding.

At two days old, after a series of upsetting tests, the specialist confirmed what they had known, “She is a Downs Syndrome child.”

For the first time, doubts and questions began to run through Debbie's mind.  “Why? How?”  These worries began to ease and eventually pass away as they got on with the easy task of loving the placid, cuddly, little baby that was Jos.  “She was such a good baby,”  says Debbie as she recalls the ease with which Jos settled into their family.

Jos had been the product of much planning and love.  Her time 'in utero' had been marked by the constant thanksgiving of her parents and by their continual dedication for her life to their Lord and Saviour, Jesus Christ.  She was most definitely His child from the very beginning.  Debbie's pregnancy had been perfect, a special time of joyful expectation, culminating in the arrival of Jos.

Jos is now eight.  She has pretty sandy blonde hair that is usually caught up in colourful ribbons.  She has lively green eyes and little gold-rimmed glasses.  She has a “love for life” and in the words of her Mum, “She sees every new experience as an adventure.”

Jos is in Grade 3 at our local Christian Community School.  At a recent sports day she competed with all the children in her age group. Her mother ran along side her in the 200 meter running race, to keep encouraging her as the others began to streak ahead.  Jos with great excitement said, “Oh look Mummy, they're going to win.”  Such is the heart of our little Jos.

She is a very affectionate little girl and many of us have the pleasure of her cuddles on Sunday mornings at church.  Church is a joy for Jos.  She loves to sing and clap and loves to be prayed for.  The church has looked on in excitement as we have watched Jos respond to prayer calls and have sensed the presence of the Holy Spirit upon her.  Jos also likes to pray for others.  Her teachers have shared with her Mum the special times when Jos has prayed for them.  She is a natural little girl who bubbles over with the love of the Lord.  Jos seems to impart something to each of us, adult and child alike.

Jos knows how precious she is to Jesus.  “Jesus loves me,”  she told her teacher one day.

“Yes, He does,” replied her teacher.

“I know,” said Jos, and then, mission accomplished, she tottered back to her seat.

Her parents have played, danced, and swung her in their arms since birth.  Jos regularly surfs with her Dad and is as at home in a swimming pool as your average fish.  Yes, she has had therapy and operations, but she has also had a very normal upbringing.  Her parents have refused to become obsessed with making her perfect, and have refused to enter into such programmes as “Patterning”.  Instead, they have chosen to love, teach, and stimulate her in much the same way as any parent would do with any child, except perhaps a little more – Jos being Jos, and Debbie and Justin being the active, outdoor people they are.

They have also refused to be cheated out of the special joy Jos brings.  Instead of seeing some aspects of her personality, such as her placidness, as typical of Downs Syndrome children, they see them as typical of Jos and just enjoy and appreciate her as an individual.  In much the same way, they see naughtiness as naughtiness and treat it accordingly.  Jos has no special exceptions and her excellent behaviour is the result.

Jos does need to be taught some things that other children learn naturally and guidance is given to Debbie and Justin so that she doesn't fall behind normal development.  She was taught to crawl, stand, walk and to speak well.  She has also been taught many things children of her age haven't.  She is a proficient swimmer and has learned impeccable personal cleanliness.  Jos, like her Mum, definitely does not line crumbs on the floor!

Her parents' easy acceptance of her condition and their refusal to bring Jos up under a 'label' has allowed her to discover her potential for loving, blessing, and learning.  Debbie and Justin continually give glory to their God for Jos's life and for the great privilege and blessing of being her Mum and Dad.

Jos is a child of God, a member of the body of Christ, the firstborn child of Justin and Debbie Evans and a sister to Elias and baby Todd Evans, whom she loves to mother.  But Jos is more than that, more than what has been programmed into her.  Jos is a child who's spirit is created in the image of God.

“The fruit of the womb is His reward”.  (Psalm 127:3).  There are no 'ifs' or 'buts' in this scripture.  It does not read, “If they are 100% healthy or normal.”  It states a simple truth – our babies are our blessings from God.

And so ends this brief description of the life of one very special little girl, who is a wonderful blessing to her parents, her teachers and to us, her church family.  But there are many stories that remain untold, for there are many children like Jos who are not given the chance to bless and to love, to laugh and to learn.

Tests like amniocentesis are designed to detect abnormalities such as Downs Syndrome, while the pregnancy is still able to be terminated, or in real terms, while the God given life can be legally destroyed.  The tests are offered along with enticing words like 'time to prepare' and 'informed choice'.  

Debbie believes that she would have been cheated out of her perfect pregnancy if she had been tested and 'prepared' for Jos's condition.  She also believes their positive prayers would have become cries of remorse and desperation.  Instead, Jos's birth proceeded with all the joyous expectation a first baby brings.  As Debbie says, “Jos brought her own love with her.  It was impossible not to love her.  The Lord Himself showed us from the start how to care for her.”

If you could know Jos, you would never again see the existence of Downs Syndrome children as a tragedy.  Her life is valid, just as it is.

Justing and Debbie have three treasures, Jos (8), Elias (6) and brand new baby 

Todd.

 

© Lues 2012