We would like to thank Penny & Gabrielle for sharing their family story with our readers!
My name is Penny and I am the mother of a special needs child who is dying from an incurable disease. Gabrielle is such a blessing to me and our family. I am thankful for the privilege of raising God’s “special” child as I walk this journey of life with her.
I have been married to my husband, Mike, for 12 years. In the first 10 years of our marriage we had 6 children. In January 1996 we had our first child, Joshua by an emergency c-section. In January 1997 I delivered our second child Jessica, it was a difficult pregnancy and delivery. One morning, when she was 10 months old, I found her dead in her crib. She had suffocated.
The next year I became pregnant and delivered a healthy baby girl, Grace, in 1999. In 2000, I delivered another healthy baby girl, Gabrielle, but at 4 1/2 months she went into a catatonic state and was placed into a medically induced coma. She was in the hospital for over a month and when she came home our lives were changed forever. She came home with a feeding tube
through her nose and on over 13 medications that she would receive 3 x’s a day. Mike and I came home from the hospital with an overload of information from her doctors on how to take care of her and how “gloomy” her days ahead would be. We did not know whether she would live or die, we knew only that God’s miraculous hand had brought her home to us. She was no longer our “perfect” little baby. She was very ill, had numerous setbacks, and would need constant twenty-four hour care.
After a lot of searching, endless questions, and medical tests, she was diagnosed with Oxidative Phosphorylation Complex I and II – Mitochondrial Disease, a rare genetic disorder. Although this is her primary diagnosis, she has a list of other medical problems, including a seizure disorder, brain damage, curvature of the spine, vision problems and more.
She is in a wheelchair and completely dependent on Mike and I and the nursing staff. Despite the illness and the many changes she has brought into our life, Gabrielle continues to be our miracle child.
In 2001 I had a miscarriage. I became pregnant again in 2002, and delivered a healthy baby boy, Andrew, in 2003.
From all of this I have learned that there is healing and hope in our Lord Jesus Christ! In spite of our pain and suffering God wants to touch our hurting spirit and heal our broken hearts.
I had always been a Christian, always went to church, always loved God but when this kind of deep emotional suffering began happening in my life my view changed and I began to question God. Does he really love me? Will this pain ever end? Why did you give me a “broken” child? As all of this was going on I began to search for something to help me put things in perspective. I needed to find an outlet for this emotional roller coaster that I was on, one that was positive, spiritual, and uplifting. I needed to find something that talked about having a special needs child, the feelings, frustrations, and challenges that a mother and family go through in raising a special needs child. I needed to find a resource, guidelines, something that would help me process all of the traumatic events of my child’s life that would ultimately change my life as a wife, mother, caregiver, and friend. I needed to know that through the pain and suffering God is there, God does love me, and that my child is not broken, she is a precious gift from God and if I will let him he will show me all of this and more.
Families are faced with so many challenges in raising a special needs child, the guilt, isolation, loneliness, fears, and exhaustion are enough to put you on the edge. There needs to be an explosive awareness to the public of what these children go through and the incredible strength of the families that love and take care of them.
Currently, I have written a journal for families raising special needs children. I am trying to get it published. It is a unique Christian-based journal. The questions invite the reader to get in touch with their initial emotions and write down memories that will serve as the foundation of their healing. As they progress, the journal allows them to communicate private personal reflections with no fear of judgment. Ultimately, they begin to feel God’s presence, learn to trust him again and lean on Him for strength and hope.
Thank you for opening the door for families to reach out and help others!
**If you have a story that you would like to share about your child, please email me at amy@momadvice and share what you and your family are going through. We would like to use this segment to raise awareness about family issues including physical and mental disabilities that families are dealing with. Our goal is to educate our readers on the difficulties that your family faces each day. Anonymous stories will be accepted, as well as stories that do not include pictures. We will always strive to protect your privacy!**
