By: Mitzi Munsey Satterfield
Learning that your precious baby was born with a serious illness is a difficult challenge for any parent.
Rachel was our third child. She was a beautiful baby, but our celebration soon became solemn and sad. Rachel was born with a very rare chronic illness that would affect the rest of her life. We would learn to depend upon God in ways we never dreamed.
I believe God gifts children who are born sick with an extra portion of grace. Their illness is their reality and they often do not realize how different they may be. Rachel was a happy child, but after her renal transplant at age seven she experienced what “feeling good” really meant.
Prayer is always necessary, but I also want to share some practical tips I learned in my journey with Rachel.
First, get organized. A notebook to keep all doctor notes, appointment dates, medication lists, test results, and questions to discuss at the next visit made all the difference. That notebook never left my side for 18 years.
Educate yourself about your child’s illness. Find out about support groups or any resources that might help. Learn about every medication your child takes, its purpose, and side effects.
Respect your child. Rachel learned at a young age how to communicate with adults. I encouraged her to ask questions of the doctors. I knew her understanding of her illness would change as she aged. My ultimate goal was for her to learn to make appropriate medical decisions for herself as an adult.
Do not neglect your other children. After Rachel’s birth my life was totally occupied with her survival. When she was two months old, I realized I had not hugged her brother and sister enough. I immediately made some changes.
Encourage your child’s relationship with God. Pray constantly that she will seek the Lord early in her life. In one particularly painful medical procedure Rachel turned her tear-filled eyes toward me and asked why did Eve eat that apple. She was five years old, and already understood the origin of sin and the consequences of Eve’s sin.
Rachel did accept the Lord as her Savior at a young age. I am so grateful to God that my precious girl is now a happily married school teacher, a graduate of Welch College, and a vibrant Christian.
She recently had her second renal transplant and is doing very well.
PS: Read Rachel’s story on the Shine blog for girls.