Every year, around 1,500 babies are born with Spina Bifida, a birth defect that affects the spine and can lead to numerous health problems. This super mom cares for two children with Spina Bifida and counts each day as a blessing.
Embracing Spina Bifida
Hello. My name is Jenni. My story begins 15 years ago when my son, Enrique was born and 6 years ago when I adopted my daughter, Jiya. Both Enrique and Jiya were born with Spina Bifida. They are both full time wheelchair users and have undergone countless surgeries. Enrique (15-years-old) has had about 40+ surgeries and Jiya (10-years-old) has had over 20. Having two special needs children in the family can be quite challenging and sometimes overwhelming, but I wouldn’t change it for the world! I was about 5 months pregnant when I learned that my son had Spina Bifida. I had never heard of it before. As I began to ask questions and do research on the disease, it became very obvious to me that Spina Bifida required a lot of medical care. I educated myself about Spina Bifida, but, there were a lot of things I had never even heard of before like: catheterizations, neurogenic bowel and bladder, shunts, and leg braces. I was so scared. I didn’t know how I was going to do it all? The medical care seemed endless, and it was. But, as scared as I was, I learned the various medical procedures so I could get things done. Enrique was 10-years-old when I adopted Jiya.
After 10 years of caring for my son, I felt compelled to reach out to someone else who had Spina Bifida who needed help. My daughter was living in an orphanage and didn’t have the medical care she desperately needed. I felt that with all my years of experience, I could take care of her medical needs as well. She was and is a perfect match for our family. Caring for my son and daughter’s medical needs would help me find my own inner strength throughout the years. As I mentioned earlier, they both have had numerous surgeries. Some were planned and others were emergencies. My first ambulance ride was with my son when his shunt went into complete failure and threatened his life. My second ambulance ride was with my daughter when she was having extreme kidney problems and began vomiting blood. Some surgeries were outpatient while other surgeries have kept them in the hospital for months and some almost took their lives. One time, they both had surgery in the same week! It was an emotionally draining time. I also became a medical professional in my own right. I find myself at numerous doctor visits, physical therapy and speech therapy appointments (just to name a few). I also learned how to give injections, how to insert NG tubes, catheterize, how to use a feeding pump, how to replace a G-Tube, how to strap on their leg braces and how to administer countless medications. I also learned how to take apart and put together their wheelchairs in record time!
It’s a crazy 24 hour a day 7 days a week schedule, and many times I find myself completely exhausted and stressed out, but, it keeps Enrique and Jiya healthy, so it’s worth it. My son and daughter have always been strong and very motivated. For the past 15 years I have watched my son do the impossible every day and for the past 6 years I have watched my daughter blossom into an incredible young woman. As a matter of fact, they ran the L.A. Marathon on Team Spina Bifida this year to help fundraise and bring awareness to their disease. It was amazing to watch them be so filled with life! I don’t think I have ever felt more proud of them then when they crossed that finish line. Every crazy day I am reminded of just how precious life really is. Caring for my Enrique and Jiya has been one of the greatest joys of my life and I wouldn’t change a thing. They have taught me life lessons that I couldn’t have learned anywhere else. Because of them I love more, have patience beyond what I thought was normal and don’t get caught up in the little stresses of day-to-day life. And while it may not always be easy, caring for them has been a blessing beyond compare.
Special thanks to Jenni J. for sharing this special story.
Shield HealthCare | Caregivers Community
