Exceptional Parent
Parenting Your Child With A Disability
Birth Cry
Kate was born on November 1, 1989, on All Saints Day. I had refused to have an amniocentesis so we did not know beforehand. I don’t regret my decision. (1996 additional comments: I knew that if the test showed “Down syndrome” I (1) would refuse the test since it can be false (2) I would be worried all the time (3) this worry would harm my infant emotionally. So I opted out of the test and said to the doctor, “I don’t care if this baby has Down syndrome, I am keeping it.
It was a very tumultuous day, the very worst day of my life. Within one hour of birth she turned blue and doctors put her on life support. She had what was called in layman’s terms “a common AV valve” which translates into a hole in the valve between the lower chamber of her heart. She was transported within hours of birth to Children’s Hospital and put in critical care unit.”
This is an addition to the original article in 1994. I am posting it here to show a brighter image of Kate. She is depicted here at three months old and we were waiting for open heart surgery. At five months old she had the surgery by Doctor Norwood who invented the “Norword Procedure”. About 40% of children with Down syndrome have this condition. While we were in Children’s Hospital in Philadelphia we met many other parents who had children with more severe issues. Some had been in this nic unit for months with a child terminally ill. We also saw other children with Down syndrome who flew in from Europe to have their child operated on by Dr. Norwood. Side note: all the nurses called her the “baby with all the hair”!
The Promise
Katie was a planned pregnancy. Both my husband and I believed that God wanted us to have a third child. It was very hard to understand initially when Kate was born with Down syndrome. Why would a good God have allowed her to have a disability? This is a question many people ask, and for some, is a reason not to believe in a good God. After the grief and the tears, we came at peace with God and recognized Kate as a true blessing from heaven. Hence this drawing’s title called “The Promise”. (Note: as I am publishing this now in 2026, our good God has shown us how much He was there at conception in 1988 and has used our story to reach others in similar circumstances to realize that a child like Kate has other special gifts to offer.)
Dad and Kate
Dad loved to toss Kate around and rough-house with her. She loves it too. 1994 (Additional thoughts in 2026: Though Katie was very fragile at birth with a heart defect, she recovered and is a very strong adult. She was part of Special Olympics for 10 years and won numerous gold medals. She was a dishwasher at Friendly’s Restaurant for eight years. She dances every day using her Wii and works out at Planet Fitness. She moves heavy furniture when we redecorate the house. She is always saying, “I want to do it myself!” She calls herself a “housewife” and frequently does all my laundry, washing, drying, folding.)
Bubbles
Katie delights in blowing bubbles. We first worked with her on blowing bubbles as part of her speech therapy. It was intended to help her mouth muscles develop. Now that she has the hand of it, she will sit for a long time and blow bubbles. It’s pure joy to watch her. (2026 additional notes: Many children with Down syndrome have very low muscle tone. For the first three years of her life we had exercises to do daily on all her joints including knees, hips, elbows, shoulders, fingers, mouth, and tongue. For these reasons is took Katie two and a half years to learn to walk, five years to learn to talk. This is one reason that these children are often labelled as “slow”.)
Johnny and Kate
In many ways, Johnny and Kate are typical siblings - one minute they are playing together nicely and the next minute . . .. Kate’s limitations have been difficult for John to understand because he is four years older and he is an exceptionally bright child.
The illustration on the top was not published in the original article. I thought it only fair to show it since it reflects nicely on John’s behavior. But, as boys will do, he liked to tease his little sister.
Many siblings have great difficulty adjusting to the reality that mom and dad need to spend extra time helping their new child, while older siblings get to spend very little time with their parents. This can lead to getting some professional psychological help for their siblings.
See What I Can Do
II will never forget Katie’s first checkup with her pediatrician. She was two weeks old and had severe hypotonia. Dr. Robinson picked her u, and we both watcher her legs, arms and head dangle like those of a rag doll. Then the doctor said, “She probably won’t walk until she is four.” This picture is Katie at two and a half years old, one month after she took her first step independently. Obviously, the doctor underestimated her.
This child conquered every physical feat that she desired to do! Persistence was her middle name. She self-taught herself to get the basketball into the hoop. Once she got it, she would just stand there over and over shooting hoops. She learned the back stroke and free style in swimming, eventually getting her all the way to the Special Olympics finals for the State of Pennsylvania.
Parent of special needs children, never underestimate what your child can do. They will surprise you. Doctors will admit that they can’t predict anything. So don’t even ask them.
Michelle White lives in Holtwood, Pennsylvania with her husband, John and children, Christin, 14, Johnny, 10 and Kate who is 4. At the time of the publication John was the sales manager for WDAC Christian Radio in Lancaster, PA. Kate attended the S. June Smith Center for children with developmental delays and a regular preschool program at Noah’s Ark.
Michelle has won numerous awards for her paintings, drawings and sculptures. Her recent works celebrate the human form and Christianity, and convey her belief in the sacredness and beauty of life. Michelle combines showings of her artwork on slides with speaking performances and music.
Update 2026: Michelle, John and Kate live in Pottstown, PA and are members of St. Columbkill Parish in Boyertown, PA. Christin is in Administration of the Harrisburg School District. John Michael is a professional videographer working in Philadelphia and New York City. Both husband, John, and Michelle are retired (ha ha) and heavily involved in their parish in music ministry, teaching, and lectoring. Learn more about this art ministry by clicking on the “ABOUT” tab at the top of the page.