Both our children were born with Fragile X syndrome, a genetic condition that results in developmental problems like intellectual disabilities and cognitive impairment. It impacts both males and females but is typically more severe in males. However, in our situation, our daughter experienced greater intellectual disability than our son. To be honest, we learned that God was able to provide everything that we needed to make it through our situation despite the difficulties, which were many. I am sure that our experiences are not foreign to families who have children with disabilities. I believe that part of the calling on our lives was to experience this family dynamic and to share with others what we learned. Being Christian, did not prevent the hurt and the pain, the heartaches and loneliness, the feeling of isolation and darkness, and the impact of those who exhibited toward us inconsiderate behavior and lack of sympathy.
During the pandemic, I felt that it was time to write about our journey. We have experienced the hand of God in our family on many occasions. Our son David after graduation was able to work during the summer at a local recreation center about five minutes from our house by car. I took him the first night and planned to pick him up every night thereafter. I went to the center the next night to pick him up and he wasn’t there. Apparently, he had taken the bus on his own.
David one day came to us and said he wanted to go to Community College of Philadelphia. We knew the struggle he had all his life learning, so we were very opposed to this idea. He applied on his own and apparently was accepted. He took remedial math and English a few times and failed. Though failing, he was determined to find a class that he would eventually pass, a film production class. David volunteers on the production team at church and is faithful every week at being there. He is never late for work or for his service at church.
One issue that was of great concern was who would take care of the children should anything happen to us. We prayed that God would provide again. This process of praying went on for several years. One day after a men’s Bible study, one of the young men came up to me and said that the Lord had spoken to him about having something to do with my family. He wanted to move with his wife and five children to another state, but the Lord told him to stay in Philadelphia. It turns out that this couple was who God brought to us to be the caretakers of our children. They are now the power of attorney and the executor of our will. Only God can do something like that.
I share some of these moments in our lives to encourage those with special needs children to show that God can provide all of our needs. We must learn how to trust Him and to seek Him with all our heart, while at the same time exercise wisdom.
