A Father’s Strength
In light of the sudden passing of Scott Mumper and as a way to honor his spirit, we now share his powerful reflection on parenting someone with FD/MAS. His words inspire us and we hope they inspire you too. Our thoughts and prayers are with his family at this difficult time.
Your daughter has McCune-Albright Syndrome and Fibrous Dysplasia. What? What is that? How will it affect my baby girl? What can I do to fix her? Did she get something from me? Did I have some recessive gene that caused this? Can the doctors find a cure? What do I need to do as her father to make her better? Lord help me…Lord, please help us. I cried this silently many days out of earshot of the family. I was a dad who just learned his youngest child has been diagnosed with FD/MAS.
Today’s question is “Where does a parent/caregiver find strength to get through the trials and tribulations of your child having a rare condition?”
I first give credit to a strong spiritual belief in God. Sometimes in my life I have abandoned HIM. But HE has not abandoned me. I would also give credit to Sarah’s mother, not just for the fact she is a nurse who could walk us through the mine fields of medical decisions, but for her faith in God. Through her I gained strength as we tackle the challenges Sarah faces. I would advise any parent that has just learned their child has been diagnosed to “breathe”. Knowledge is power. Educate yourself through FD/MAS websites, Magic Foundation and National Institutes of Health (NIH). Don’t panic, it’s going to be alright. Since Sarah’s diagnosis, we collectively always had two main goals in mind.
- To keep Sarah out of pain as much as possible.
- To give Sarah the best quality of life possible.
To that end we have been successful thus far. Sarah has an older brother and sister who I also receive strength from. They have been with us every step of the way. No matter the distance nor the circumstance we as a clan remain strong. Strength comes in different forms. No matter where you draw your strength, seek it out. It is necessary during difficult times. It is a blessing to be shared.
Additionally, “love” gives us all strength. It remains a mantra of sorts in our family. “Love You More” is chiseled on Sarah’s paternal Grandmother’s headstone. Some family members have those words tattooed on them. We say it to each other often. Love gives strength to all who give it and receive it.
We have worked diligently to instill a positive spirit in Sarah and if you ever have the chance to meet her you will see she emits special qualities possessed by few. I could not be prouder of the woman she has become and look forward to the future. She gives me strength. Let me say that again. Sarah Elizabeth Mumper gives me strength. She shows me every day we are going to be okay. The future is bright. We do not just survive but thrive.
Respectfully submitted – H. Scott Mumper (Sarah’s Dad)