A Family of Grace

After all the anticipation and the rigors of childbirth, she was finally here! Carol had delivered a beautiful, healthy 7 lb.12 oz. baby girl. All was right with the world and before long Carol and Forrest Cox were on their way home with baby Jennifer. Everything at home was ready for this new addition to their family.  Even big brother, Chris, had been schooled in proper “new baby” etiquette. Yes, things were going to be different in this household. Little did they know just how different life would be in the near future.

Carol Cox was well acquainted with child rearing and normal child development, having watched her son grow for over 3 years. She also had the experience of being the oldest of seven children in her family. She helped raise her siblings who were substantially younger. She remembers having a baby on her hip from the time she was twelve, helping Mom with all the details of family life. This on the job training gave her specific insights in observing the growth of young children.

Jennifer was a happy, well-adjusted infant and small child until she reached the age of 18 months. All those years of family training Carol had experienced suddenly became very important as she began to notice a trend of regression in her daughter’s development. Jennie stopped reacting normally to sounds around her. If her name was called she didn’t react. Loud noises didn’t distract her. She couldn’t stack blocks or even roll a ball. It seemed that she had totally retreated within herself, and she never walked independently. It was as if the lights had been turned off, and she was in her own little world.

All of these signs were very troubling to Carol. The doctor noticed the same symptoms and voiced concerns. Something was definitely wrong with their beautiful little Jennie, and no one was able to help them with a diagnosis. They were led to believe that she was simply mentally retarded. Carol wasn’t convinced that the problem had really been rightly diagnosed.

She began searching for information about children with the symptoms that Jennie was displaying. When her efforts came up empty, she finally settled her heart and prayed that God would reveal the true nature of Jennie’s condition in His perfect timing. A year or so later a former Sunday school teacher sent her an article from the Baltimore Sun newspaper that seemed to describe Jennie. That article was about something called Rett Syndrome.

What is Rett syndrome? (this description and list provided by Rettsyndrome.org)

Rett syndrome is a rare genetic neurological disorder that occurs almost exclusively in girls and leads to severe impairments, affecting nearly every aspect of the child’s life: their ability to speak, walk, eat, and even breathe easily. The hallmark of Rett syndrome is near constant repetitive hand movements. Rett syndrome is usually recognized in children between 6 to 18 months as they begin to miss developmental milestones or lose abilities they had gained. Rett syndrome is caused by mutations on the X chromosome on a gene called MECP2. There are more than 900 different mutations found on the MECP2 gene. Most of these mutations are found in eight different “hot spots.” Rett syndrome is not a degenerative disorder with individuals living to middle age or beyond. It is not inherited. Rett syndrome occurs worldwide in 1 of every 10,000 female births, and is even rarer in boys. Rett syndrome can present with a wide range of disability ranging from mild to severe. The course and severity of Rett syndrome is determined by the location, type and severity of the mutation and X-inactivation.

Symptoms May Include
•Loss of speech
•Loss of purposeful use of hands
•Involuntary hand movements such as handwashing
•Loss of mobility or gait disturbances
•Loss of muscle tone
•Seizures or Rett “episodes”
•Scoliosis
•Breathing issues
•Sleep disturbances
•Slowed rate of growth for head, feet and hands

That was it, because Jenny displayed almost all of the listed symptoms. It wouldn’t be long until her doctors would get the diagnosis correct. Rett!

For years Forrest and Carol Cox struggled with their feelings about the debilitating disease that Jenny would have to endure her entire life, however long she might live. Around-the-clock care was putting great strain on their family.  Carol will tell you that for eight years she was mad at God for allowing such a terrible thing as Rett to exist. God’s grace won the day as they realized that they had been given a special work to do for one of the weak ones in His kingdom.  And along the way, a family has learned and displayed many fruits of the Spirit because of loving and working with Jennie.  Love, Joy, peace, patience, kindness, goodness, faithfulness, gentleness, and self-control have become hallmarks of their lives.

Jennie is now in her forties (you never give the exact age of a lady without her permission) and has endured several surgeries related to her condition. Through it all she has a loving family that sees their labor as a mission from God, one they will faithfully perform as long as they have strength. The reality is that Jennie has taught them much more about life and God’s grace and love, than they could ever teach her.

There is however a dream they have that is of yet to be realized. One day in a wonderful place called Heaven they will stand with perfect bodies next to a lady they knew as Jennie. In the past they helped a weak child grow through life, into adulthood, bearing her many disabilities. This time she will not be weak Jennie, but a young woman, in a faultless body, and she will be praising her Lord and Savior Jesus Christ together with them.

Those of you who know this lady and her wonderful family should be shouting, with me, these words: Isn’t God’s grace a wonderful thing!

Roger Allen Cook

I love to write stories about God’s grace. If you have a story I should consider, please contact me at: Roger.Cook@Southsidefamily.com.