When we sat down to complete our MCC in the Summer of 2015, we marked “no” to every condition listed under the “neurological condition” heading. While we were confident in our ability to parent and care for a child with medical needs; neurological needs terrified us. Despite our fear, a few months later a picture and story on CCAI’s Special Focus page captured our hearts. His diagnosis was meningocele, a form of Spina Bifida. We requested his file and when it came to us time was of the essence! We received it on a Thursday and CCAI was scheduled to return the file the following Monday. After a talk with our pediatrician and a physician who is both a family friend and a parent through adoption, we were sure that we had the resources and ability to care for our soon to be son, Eli. We realized that we had many family members and friends who had experienced back and neck surgery and suddenly a spinal need didn’t seem nearly as scary. We excitedly submitted our PA the following Monday.
Eli was 4 ½ by our Family Day on August 1, 2016. While we were in China, we were concerned about his mobility because it seemed that he fell constantly. His core and legs were weak and his balance was poor. By the time we flew home, he was covered in bumps and bruises from all of the spills he took in-country.
Almost immediately after we got home, our pediatrician sent us to the Spina Bifida Clinic in Hershey, PA. They are amazing! Eli goes there once a year to be seen by the specialists who help monitor his condition: urologist, orthopedist, neurologist, and occupational therapist as well as a Social Worker who assists in coordinating his care. Hershey helped us get set-up with physical therapy once a week close to our home through IU. Care through IU means that during the school year, the physical therapist sees Eli during school which makes scheduling a snap! He has improved so much that his therapy is now being reduced to once every 10 to 14 days and he was even able to play T-ball this past Spring. Although his gait is still a little abnormal, we expect that soon he will progress so far that he will no longer qualify for therapy. Eli is a happy, confident, energetic little guy who loves to go and is always eager for a new adventure (and rarely falls)! He loves to run and jump and play with his big brother. Any day spent outside is a great day in Eli’s opinion. Eli hasn’t just adjusted well, he has blossomed! His doctors and occupational therapist are all amazed at how far he has come in the past year.
The hardest part of living with Eli’s diagnosis is in knowing that his physical condition could worsen at any time. By worsen, we mean a loss of function for his lower extremities, bowels, or bladder. As is typical of children with Eli’s diagnosis, he has the secondary diagnosis of Tethered Spine from the scar tissue resulting from the surgery to repair the meningocele sac on his back. While Eli’s neurologist is confident that any future loss of function caused by the tethering can likely be reversed with surgery, we know that we are waiting for a back surgery someday in the future as Eli grows and the nerves in his spine get stretched. While we have every confidence in Eli’s neurologist and Eli’s ability to recover from the surgery, it’s difficult as a parent to know that the pain of such a difficult surgery is likely in our son’s future.
To other families considering neurological conditions, especially those that might sound scary, we would recommend:
- Be honest with yourselves and what you think your family’s ability and resources will allow you to handle and where your limitations lie. Don’t feel the least bit guilty for your honesty.
- Talk to trusted doctors; talk to professionals across a variety of fields that can help you understand the medical facts for the condition(s) that you are considering. Spina Bifida and conditions like it are common enough that finding experienced specialists shouldn’t be difficult at all.
- Beyond doctors – talk to parents! Parents of children with medical needs are living the life that you are considering. We can help you step out of just the clinical fact sheets and see what living this life is like.
- Educate yourself about conditions and possible outcomes; prepare for the hardships and speed bumps along the way, but don’t allow that to make you lose sight of your child’s potential!
We are beyond thankful that we didn’t let our fear stand between us and this life. Eli doesn’t let anything hold him back and we’re so glad that we didn’t either. Eli is a joy and a blessing with a zest for life that is contagious. To anyone even passively considering a Spina Bifida diagnosis, we want to say that Spina Bifida doesn’t run our life; it’s just a side note to the bigger story of our lives together.