RESOURCE: Mother of special needs child offers hope to other families in her position
BARTLETT, Tenn. (BP)--When Lisa and David Barron's daughter Madison was born in 1994, Lisa assumed her precious little baby would "one day grow into a little girl, then to sweet 16, on to a young lady and then to a woman."
But that never happened.
Madison experienced breathing problems when she was born, but it was not until a few weeks later that it became apparent she had serious health issues. During her short time on earth she endured numerous hospital visits, seizures and other medical problems. Yet, before she died in 1999, Madison also experienced a tremendous amount of love from her parents, siblings, family members and friends.
It took Lisa Barron two years to determine how she might tell Madison's story to give special comfort and practical insights to families with special needs children. About six years of writing and editing followed, culminating with the release of "Precious In His Sight: A Mother's Journey of Faith With Her Special Needs Child."
Barron noted how difficult it is for families to accept the fact they actually have a special needs child.
"No one came to me at any time after my child's birth and said, 'You have a special needs child,'" Barron writes in the book. "There was no real Aha! moment when I figured out what was going on with our precious daughter Madison. It was a gradual process with a sinking feeling that we should be 'further along' than we were."
As a neonatal nurse, Barron had an advantage that many mothers of special needs children do not have, yet she admits she was angry and disappointed when she finally accepted the fact that Madison would not become a healthy little girl and experience a full life.
"Hard as it was, I knew I had to work through my grief and make my way toward acceptance," she writes in the book. "My daughter needed me to be strong and love her exactly the way she was. I wanted our family to be happy and live as normally as possible."
The first step was to admit to God "I was brokenhearted, disappointed, angry and sad. In my humanness, it was difficult to see these were emotions He experienced too," she writes, citing the story of Jesus weeping over the death of Lazarus.
After coming to that realization, Barron was "gradually able to accept what God had given me. Madison was a very special child -- like no other. I realized God had a plan for her life and that plan was totally different than mine."
Barron also learned the hard way that she could not be in control. "Of course, I had not ever been able to control anything, but this was news to me. I was so exhausted and beaten down. Looking back, it was because I was in a constant battle with God over control of things. Once I stopped fighting Him and welcomed His direction, I felt refreshed and energized," she recounts in the book.
Barron's book recaps various steps of her five-year journey and what she learned along the way, particularly so that parents, families and friends can understand "the blessing of their special child. May they learn to love and enjoy their child in a new and fresh way, just the way God made them." Other goals for the book were to help families with special needs children see they are not alone -- and to help friends of those with special needs children see how they might offer help.
When Madison was almost 2, the Barrons joined Faith Baptist Church in Bartlett, Tenn., because their former church was unequipped to help meet their needs.
Faith Baptist had pediatric nurses among its members who voluntarily gave their time to sit with Madison so the couple could attend services.
"That lasted for three years," Barron recalled in an interview with Tennessee's Baptist & Reflector newsjournal. "They saw the need and reached out to us." Looking back, Barron said they had to have child-care workers who knew CPR and medical procedures. "That was so amazing that we had so many nurses who knew what to do and weren't afraid [to care for Madison]." Barron noted that many families with special needs children can't attend church without help. "Churches need to open their eyes and see the need. It will not happen if members don't visit and talk to people." Faith Baptist, she told the Baptist & Reflector, became aware of their needs and responded after a visit by deacons.
Barron said she also hopes to offer special comfort to families who do not know Jesus as their Lord and Savior. She concluded her book with this thought: "If just one person invites Jesus Christ into her heart and life while reading about our experiences, Madison's life will not have been in vain. If just one parent learns to find joy in his special needs child's life, my efforts have not been fruitless."
Lonnie Wilkey is editor of the Baptist & Reflector, newsjournal of the Tennessee Baptist Convention. "Precious In His Sight: A Mother's Journey of Faith With Her Special Needs Child" by Lisa Barron is available through www.amazon.com or www.barnesandnoble.com or by contacting Barron at lisabarron@bellsouth.net.
