A New Spirit
On December 30, 1999, Debra Snyder and her husband, Mark Storck, began an unexpected journey with the birth of their daughter, Raegan Aria.
"She was whisked immediately to the other side of the delivery room. I was miffed that my birth plan to have the baby placed immediately on my stomach wasn't being followed," Deb says (click here for Raegan's complete birth story).
Within an hour of Raegan's birth, Deb and Mark learned that their baby daughter's head circumference didn't fall within the expected range for newborns. Within five days they knew from the magnetic resonance imaging of her brain that Raegan also has lissencephaly, microcephaly and agenesis of the corpus collosum. In simple terms, her brain did not form properly during gestation. Instead of the normal gyrated pattern, its surface is smooth and the size is smaller than it should be. The area that separates the two lobes of the brain is missing.
Those first days were a blow to the heart, but Raegan's mother and father did not let it be a fatal one. Instead, they chose to allow their daughter to be their teacher.
Deb explains, "Prior to Raegan's birth I was very consumed with work and providing material comfort for my family and myself. I gave little thought to my soul's purpose and did not listen to my higher self. Raegan is quite a teacher. Her presence in my life has made me look at the "big picture" and re-visit the philosophical thoughts of my youth. Material things mean much less to me now. Our new motto is simplify."
She goes on, "We focus on living a happy life today with hope for tomorrow. We do not live years ahead of ourselves, as we don't know how much time we will have together on this earth. Our top priorities are sharing our love, time and lives with each other. We do more with less and focus on ourselves individually and as a family. Although we still enjoy nice things, we do not hold money, status or objects in high regard."
Raegan is now two and a half years old. She can do many things that some might not have expected her to. She eats solid foods, rolls both ways and is learning to commando crawl. Most importantly, she's a very happy child.
Deb says that she's surprised by how much better her life is since having Raegan. "In addition to having a beautiful baby girl with a disability, I had expected work, challenges and heartache--which is part of it. I did not expect light, clarity, spiritual growth and immense happiness."
She is also realizing a side of herself that wasn't apparent before having Raegan. "I have learned that I am a good nurturer; a good mother. I can be caring and patient. In the past I was known to be aggressive, tenacious and strong. A softness has been combined with my strength; a side of myself I never knew existed (or ignored)."
With the increase in her feminine side, she is discovering that she has an intuitive gift. She is working to develop her skills in that area and is also writing a book that describes her spiritual transformation. Recently, she started an online support group called "Angel Baby Moms."
She is grateful for the support that she has in her life. "My husband is a good friend and knowing we are going through this together helps a great deal. I know he understands how I feel when no one else really does. Just talking to him and holding each other really makes a difference. Holding and caressing Raegan really grounds me as well. I also reach out to friends through on-line support groups. Other parents who live similar lives can give great advice and perspective."
"My mother has consistently been the most supportive person for us. She has been strong, loving and really goes with the flow. She is the only person other than Mark and I who feels comfortable caring for Raegan alone. She is not afraid of her or her special needs. We have many other friends and family members who are also supportive, but many come in and out of our lives. My mom is always there for us."
Written by Carolyn Murray
