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Families That Inspire: Meet Carter

09/24/2013 06:40PM, Published by Brian O, Categories: In Print, Sports & Rec, Health, Today


Carter


Gallery: Meet Carter! - September 2013 [7 Images] Click any image to expand.



By Marne Dekkers


What is Spina Bifida?

Spina Bifida is a birth defect that happens when the baby’s spine doesn’t close properly. It happens before birth while the baby is still developing in the womb. This opening in the spine exposes nerves and can cause varying degrees of paralysis, bowel and bladder issues, hydrocephalus (a build up of fluid within the brain), and other developmental delays.

 

When did you first find out about your son’s Spina Bifida diagnosis? How did you decide what to do next?

We found out that Carter would be born with Spina Bifida at his 19 week ultrasound. They could see the opening in his spine as well as spinal fluid that was collecting in the ventricles of his brain. We were scared and completely overwhelmed with a flood of medical terms and jargon. We learned everything we possibly could about Spina Bifida in the four months leading up to his birth. We learned he would face surgery to close his back soon after he was born, and he would also need a shunt in his brain to take care of the fluid in the ventricles.

 

What was your family's course of action?

To say our emotions were on overload is an understatement. There were so many unknowns that we couldn’t control. We relied heavily on our faith, as our friends and family lifted our baby and our family up in prayer. There is great power in prayer and we felt it everyday.

 

Before Carter was born, we got in touch with other families who had kids with Spina Bifida. Doing this gave us a lot of reassurance. After meeting these kids and their families, we learned quickly that these kids were much more like any other kid than not. Yes, they had some challenges and yes, some things were done differently, but they were kids first – bright, happy, fun-loving little kids who were loving life.

 

Are there any resources you would recommend?

In addition to meeting with other families that have kids with Spina Bifida, there are some great online resources such the Spina Bifida Association’s website. We also found it very informative to read blogs and CaringBridge sites of families with kids that had Spina Bifida. It’s amazing what parent support can do for you. Walking alongside someone in a similar journey and being able to support them as well as having them support us has been very helpful.

 

What role did your child's school/teachers play?

We started seeing the local school system’s Birth to Three program soon after Carter was born. They regularly evaluated his needs and implemented in-home therapies that would help him reach important developmental milestones. After he turned three, we started with the Early Childhood program where he attended preschool and received his therapies. We give so much credit to the people who implement these programs. Working with them in a partnership to do what’s best for Carter has always been key. We believe home and school working together will continue to be key as we transition into the school years with him.

 

What advice do you have for other parents of children with Spina Bifida?

Take things one day at a time and don't get too far ahead of yourselves. If you encounter setbacks, handle them and move on. As Carter’s parents, we’ve learned so much about what’s important in life. Our perspectives have changed for the better. Having a disability like Spina Bifida isn’t so much about what you can’t do. It’s more about finding the things that you can do and building on those things. 

 

Is there anything else you'd like to add?

Having any kind of medical diagnosis can leave you feeling like you wear a label. Seeing beyond that label is important. Don't let a diagnosis limit you or your family. Spina Bifida will always be part of Carter’s story, part of our family’s story. But it isn’t the essence of the story. We are a family first. He is a little boy first, a boy with a spunky, fun-loving attitude who loves life. None of us knows where our life journey will lead, but it's certain that every day is a gift to live to its fullest.



parents families children inspire spina bifida


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    07:30PM — 10:00PM

    Rodgers + Hammerstein’s CINDERELLA is the Tony Award®- winning Broadway musical from the creators...


  • Little All Stars

    04/08/2017
    09:00AM — 09:50AM

    -Ages: Walking - 6 years -10 punches per card -Cards do not expire


  • SFLS Craft & Vendor Fair

    04/08/2017
    09:00AM — 02:00PM

    Come on out for a day of shopping! Food Trucks, Craft Vendors, Gifts, Face Painting, Baby Gifts, ...


  • Super Second Saturdays

    04/08/2017
    10:00AM — 02:00PM

    Super 2nd Saturday is a special new program for our patrons! Each month features new exciting, ed...


  • Super 2nd Saturday

    04/08/2017
    10:00AM — 02:00PM

    Super 2nd Saturday is a special new program for our patrons! Each month features new exciting, ed...


  • Spring Party

    04/08/2017
    10:00AM — 11:30AM

    Hop on over to Morningside Community Center. We will be playing games, making friends and making ...


  • Easter Bunny at Sioux Empire Mall

    04/08/2017
    10:00AM — 08:00PM

    IT'S TIME FOR EASTER BUNNY PHOTOS He'll be waiting for you Center Court. Simply go to simon.noe...


  • Tee-Ball

    04/08/2017
    10:00AM — 10:45AM

    Come to this intro class on tee-ball.where you can learn to play the sport or practice the skills...


  • R is for Robot

    04/08/2017
    10:30AM — 11:30AM

    It's a robot party. Come join Chip, Sprocket, and all the other robots as we explore all thing ro...


  • Infant CPR

    04/08/2017
    11:00AM — 12:00PM

    Monthly on the second Saturday


  • Tee-Ball

    04/08/2017
    11:00AM — 11:45AM

    Come to this intro class on tee-ball.where you can learn to play the sport or practice the skills...


  • ATTENTION RETURNING CAMPERS! RECONNECT WITH YOUR CAMP FRIENDS! PLAY YOUR FAVORITE CAMP SPORT! ...


  • Saturday Cookie Decorating Days

    04/08/2017
    02:00PM — 04:30PM

    Call us by Friday 605-978-0991 and you can come in and decorate cookies on Saturday! We do cookie...


  • Rodgers & Hammerstein's CINDERELLA

    04/08/2017
    02:00PM — 05:00PM

    Rodgers + Hammerstein's CINDERELLA Mary W. Sommervold Hall Rodgers + Hammerstein’s CINDERELLA i...


  • Super Saturday's

    04/08/2017
    06:00PM — 08:00PM

    We are bringing back our Saturday night open gym! Every Saturday night from 6-8pm! Anyone ages 6-...


  • R is for Robot

    04/08/2017
    06:15PM — 07:15PM

    It's a robot party. Come join Chip, Sprocket, and all the other robots as we explore all thing ro...


  • Rodgers + Hammerstein's CINDERELLA

    04/08/2017
    07:30PM — 10:00PM

    Rodgers + Hammerstein’s CINDERELLA is the Tony Award®- winning Broadway musical from the creators...


  • Rodgers & Hammerstein's CINDERELLA

    04/08/2017
    07:30PM — 10:00PM

    Rodgers + Hammerstein's CINDERELLA Mary W. Sommervold Hall Rodgers + Hammerstein’s CINDERELLA i...


  • Archival Preservation Program

    04/09/2017
    02:00PM — 04:00PM

    Do you have important documents you would like to preserve? If so, the Old Courthouse Museum w...


  • Stained Glass Concert

    04/09/2017
    02:30PM — 04:30PM

    EVENT OVERVIEW: Join the SDSO for the sixth season of the Stained Glass Series. Experience the...


  • Little All Stars

    04/10/2017
    09:00AM — 09:50AM

    -Ages: Walking - 6 years -10 punches per card -Cards do not expire


  • Playgroup for Toddlers and Preschoolers

    04/10/2017
    10:00AM — 12:00PM

    Play Groups are specifically for kids and their caregivers. Gather your friends at our “house” to...


  • Sensory Friendly Art & Adventures

    04/10/2017
    10:00AM — 11:30AM

    In honor of April being Autism Awareness month, the Center for Disabilities and Museum of Visual ...


  • Latches

    04/10/2017
    06:30PM — 08:00PM

    Breastfeeding takes a village. Nourish your baby in a safe, comfortable place, surrounded by your...


  • The Ransom Church, located at 700 N. Main Ave in downtown Sioux Falls, is sponsoring an "After th...



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