A Life Worth Celebrating
I have already been faced with the question if I’m planning on bringing life into this world.
I’ll never forget the day when the genetics counselor at the National Institutes of Health, (NIH) sat me down to discuss my newly discovered gene mutation. With a serious face, she asked this question- “Will you want to have children if you could potentially give them this mutation?”
My response was equally serious. “Yes, I do,” I told her. “I have lived a great life and if my child has this same gene mutation, they will live a great life as well.”
Having MAGIS Syndrome has made me passionate about many things. I’m passionate about the fact that I am MORE than my disease. I’m passionate about the fact that MAGIS has given me a story to share. I’m passionate about my life mantra that I’ll define my disease and surpass every limitation it sets in my path. Most importantly, I’m passionate about life.
I believe without a doubt that life begins at conception. Whether a life is a three-week baby fetus or a 100-year-old person, that life should be celebrated.
If my mother’s doctor knew I had a gene mutation when my mother was pregnant with me then there’s a good chance the doctor would have sat my parents down to discuss their “options.” Had they believed in options and not wanted a child with extensive health issues, then there’s no doubt what they would have chosen. But look what they would have taken from me— A life full of opened doors. A life full of opportunities. A life full of victories.
Mothers and fathers who find out they are going to have an ill child have many reasons for choosing other options instead of life and I believe it’s because the focus is on the pain and the “cannot” their son or daughter will experience in life. But the focus should be on the joy and the “can’s” they will experience in life. I can say this because I am a CAN who could have been a CANNOT.
Believe me, I don’t understand why a person in a supermarket aisle is dying from cancer, but the person right beside them in that same aisle is perfectly healthy. My mind can’t comprehend why an adult with a disease has a wonderful quality of life with a long lifespan, but a child with that same disease dies before they even have a chance to live. It breaks my heart and I probably won’t have the answers this side of Heaven. But here’s what I do know… the life of that person who had cancer and the life of that child who died way to young had purpose, meaning, and worth.
The time will probably come in the future where I will have life growing inside of me, a son or daughter who could be born with MAGIS Syndrome. Whether my child never lives to be placed in my arms or whether they live to give me grandchildren they will never doubt this fact: Their life had a profound impact on mine, their life gave mine worth, and their life was celebrated.
