Ann Shaw – Birth Defect, Spina Bifida
Have you ever heard that phrase, “Having a child is to have your heart running around outside your body?” As a mom we feel vulnerable to a world that will impact our children and leave a mark on them. Some good and some bad. Miracles on one end of the spectrum and utter devastation on the other. Both coexist in life and somewhere on the spectrum we find birth defect.
The excitement of a child’s birth and a birth defect are the reality for my guest Ann Shaw. Previous attempts at conceiving had left Ann and her husband Joe, believing that biological children were not going to be part of their family. The realization of a spontaneous pregnancy had them off the chart elated. Even the early indications of impending complications could not put a damper on their joy.
I would not know anything about spina bifida if not for my friend Ann. So incase you’re like me, allow me to set you up for the conversation by sharing the definition so that you will have a reference point for our discussion.
Spina bifida – A congenital defect in which the spinal column is imperfectly closed so that part of the meninges or spinal cord protrudes, often resulting in hydrocephalus (A usually congenital condition in which an abnormal accumulation of fluid in the cerebral ventricles causes enlargement of the skull and compression of the brain, destroying much of the neural tissue ) and other neurological disorders.
Neurological disorders are indeed part of the journey for Ann and her family. In this episode Ann shares how she, her husband Joe and son Cameron navigate the challenges of life with a birth defect. Cameron who is now 18 years old, has endured 40+ surgeries and a little over a year ago his life hung in the balance as doctors called on every resource they knew to use and/or was available to the medical community.
What are the questions of a mother’s heart as she watches her child suffer from complications of a birth defect, the pain of surgery or the pain of being bullied? When the quality of life is called into question what does that mean in a real-time, real-life human being and a real God whom we profess to be good?
Could it be that any perceived imperfection in this life is merely a mirror to the imperfection in one’s heart?
Lived Loved and Thrive!!
Transcript: https://www.happyscribe.com/transcriptions/7a3914e60db54e85955a643702dc63c4/edit_v2
Bio: Ann Shaw is a devoted wife and mother. She has been married to her husband, Joe for 31 years and they have an 18 year old son, Cameron.
Ann worked in the dental field for more than 20 years managing the front office. When she gave birth to a son with Spina bifida, she made the decision to stay home to care for him. Cameron was in and out of the hospital since birth and was faced with many surgeries. As a result, he has a permanent cecostomy tube in his stomach, he can’t feel his feet and is prone to infections.
Ann quickly learned that this would be her new normal. With her continued effort, she wanted to make Cameron’s life as normal as possible. There were lots of struggles along the way, but she has always managed to maintain her joyous, positive attitude.
