Love begins at home, and it is not how much we do… but how much love we put in that action. ~ Mother Teresa
Margaret contacted me several months ago about maternity pictures and at that time she told me with a deep aching that their long awaited baby girl was diagnosed with encephalocele. Most people wouldn’t know the struggles they have wrestled with, because the they are happy, in love and so filled with thankfulness. To say that they have taught me a few things is an understatement. They are my heroes.
Mike, the dad, has a very touching blog about their experiences and the following in italics are excerpts from his website, The Tech Block, where you can read more about their amazing story.
An Encephalocele, by definition, is a neural tube defect characterized by sac-like protrusions of the brain and the membranes that cover the brain through an opening in the skull. The opening in the skull tends to be the result of the skulls inability to fully fuse together while it’s being developed.
After being told by their doctor that they should consider termination and making the choice to continue with this precious life he wrote, “With the most monumental decision behind us we were able to begin trying to recover any sense of excitement possible for this pregnancy. I told Margaret I was positive we were going to be great parents. I knew this because we’ve already made our first major decision for our child, and she was still alive. I cannot underscore enough the importance of humor in life.”
With strength, humor and grace these parents have been like a beacon of light, shining their love and devotion to their daughter while giving the rest of us a glimpse of what it’s like to be courageous and to believe in something bigger than ourselves. Weeks after the diagnosis Mike wrote this, ”I forced myself to realize these are things that are out of my control and it is my calling to accept that what’s meant to be will be and however the road turns I cannot abandon my trust in God’s planning. I also took it upon myself to more feverishly seek Him and every time I did I would find exactly what I needed to find to put me at ease.”
This sweet girl has already undergone one neurosurgery like a champ. Her second surgery is planned for December, so please keep this family close to your heart and in your prayers. Below you will find a way to support them through a fundraiser Mike is taking part in.
In yet another way that shows this families beautiful hearts, Mike is participating in a fundraiser to support the hospital their daughter was born in, All Children’s of St Pete. All Children’s Hospital of St. Pete treats thousands of children each year, regardless of their family’s ability to pay. These kids are facing scary stuff like cancer, cystic fibrosis, and injuries from accidents to name just a few. If you would like to be a small part of their really big story, you can show your love and support here.
I love the Dr. Seuss quote they have above her crib. It’s a very simple yet profound way to see our life. Thank you Mike and Margaret and Baby A for showing me your story.