Baby in the Bluegrass Guest Blogger Sue-Minton shares her experiences as a mother of a child with special needs, and discusses resources she found to be valuable.
Alex at birth
As I was in labor with my 2nd child, a daughter, the doctors informed me that the baby had Spina Bifida. My reaction was “Spina what?” I had never heard of Spina Bifida, and had no clue that at the time research had shown 1 in every 500 KY births had been affected by some level of Spina Bifida; 1 in every 1000 births nationally! Wow, why did KY have so many more than the National statistic and why had I never heard of this birth defect? Now we are at the National average. Then to learn that taking a certain amount of Folic Acid daily before I became pregnant could have cut the chances of my daughter being affected with this by 70%! No one ever informed me about the importance of Folic Acid and pregnancy planning. I am sure you are asking yourself what in the world is Spina Bifida. Well, there are several different types of Spina Bifida, and I will explain the one I know best called Myelomeningocele. In my terms it is where the covering of the spinal chord fails to close causing damage to the baby’s nerves. This leads to many other complications and the amount of complications can depend on the level on the back where the chord failed to close.
The first time Alex stood at Cardinal Hill Hospital
Lets move on to talk about my daughter. She is now soon to be 14 going on 20! I look back over the last 14 years and can’t believe everything she has endured mentally & physically. We have had 12 surgeries to date and many hospital and doctor visits. Her level of Spina Bifida is L-4 on her spine (which is lower down the back). The lower the level – the lower her paralysis is on her body. Along with her partial paralysis from the knees down, her bowel and bladder will not function properly, she has water on her brain and has a shunt placed to maintain this level, plus she has behavioral, social and learning deficits! We were told at birth that she would most likely be confined to a wheel chair and lack independence, along with other textbook information. The one thing I can say I know about Spina Bifida is that each case is not textbook. It affects everyone differently in one way or another. We became very proactive starting her in outpatient therapy at Cardinal Hill at 6 months. She stayed there until age 5 where she learned how to talk, walk, write and even ride a bike! Wow, what an amazing job her angels at Cardinal Hill Preschool did for her. During her stint there we had many hospitalizations and surgeries, and most of the time my husband and I worked full-time. We have been VERY fortunate to work with employers who were very flexible and understanding with us throughout her entire life.
Alex in her first tiny wheelchair.
We have many struggles that can change over night. They can be physical and they can be mental. We have had struggles with schools/teachers not allowing us to be an active part of her education, and not understanding that she is not just physically disabled; she also has learning, behavioral and social challenges. Our family deals with struggles because of the care our daughter requires. On top of all of it she is a teenager! That in itself comes with a totally different set of issues.
Alex participating in the win-o-lympics
Things that I have found helpful is finding support with other parents of children with special needs or groups/organizations. When your child is in school take an advocate (which can be anyone) with you when it is time to discuss your child’s Educational Plan. If you are going to a doctor that you are not comfortable with, find another one. There are many specialist in Louisville, Lexington and Cincinnati – all within an easy drive. Prayer helps ease your mind and keeps hope present in your heart. Laughter and not taking life too serious is a major plus. We try to find humor in everything. There have been times when there was no laughter available, however it does return. Therapy for the parents can be very beneficial. Healthy children can be a strain on a marriage, and children with special needs can triple that strain. We are so lucky to have the great resources in Lexington such as Shriners Hospital and Cardinal Hill.
I continue to ask myself how God could trust me to properly take care for such an amazing child with so many needs. I then tell myself that God’s humorous response to me is “you ain’t seen nothing yet; there is still so much more to come!” Again, my sense of humor has been my salvation.
Alex today at summer camp.
Special thanks to Sue-Minton and her family for sharing their experiences with us. For more information on Spina Bifida, please visit www.sbaa.org.
My husband and I always said we’d find a church once we had children. That turned into once we had children in school, and we church shopped for years before finding a place to call home.
If this sounds like you, I encourage you to stop by Southern Acres Christian Church on Harvard Drive in Lexington. Last Sunday was the launch of KidStuf in the new state of the art family theatre. It is a funny, engaging 45-minute program for families. It’s actually Christianity 101, so it’s perfect for adults who are looking for the fundamentals and kids who easily get bored. My boys, 8 and 5, left saying that church was so fun last weekend.
I’m so proud of my little church on Harvard Drive. I hope you’ll stop by one Sunday to see what the fuss is about. KidStuf is at 10:15 a.m., with worship services at 9 and 11:15. Look for me if you do come… I’ll be the one with the big, goofy grin.
Southern Acres Christian Church, Sundays at 10:15 a.m.
Expecting Great Things – featuring Supermodel, Mom & Author Kim Alexis
Sunday, Nov. 8, 2p-4pm – Marriott Griffin Gate Resort
Expect Great Fashion, Gift Bags, Prizes & Information
Maternity Fashion Show
Fabulous fashions provided by:
destination maternity, MOTHERHOOD Maternity, a pea in the pod maternity
FREE to public but space is limited.
To register, please CLICK HERE.
Central Baptist Hospital is giving away free Pregnancy Journal & Organizers! Sign up today to get your copy!
Great start to school season! IHOP is offering free meals! Kids 12 & under eat free everyday from 4pm-10pm. This offer is valid until September 13, 2009.
Fun Fact: IHOP serves more than 700 million pancakes per year! That’s a lot of syrup!
Come join one of Kentucky’s most picturesque venues, Keeneland Race Course, as they celebrate another year of making wishes come true! Participants will enjoy a magnificent view of Keeneland’s 147 acres of rolling hills, historic grandstands and white horse barns while gathering with family and friends to help raise funds to grant the wishes of children with life-threatening medical conditions. Join us for a magical day complete with the walk, 5k walk/run, Kid’s Fun Runs, refreshments, prizes, and fun for all ages!
