Living with Spina Bifida: The Joys, Struggles, and Lessons of Raising a Child with a Disability

Living with Spina Bifida: The Joys, Struggles, and Lessons of Raising a Child with a Disability

Living with and raising a child who is physically challenged can be overwhelming. But a mother will do anything for her child. Gerard is now 21 years old, still trying his best to live a not-so-normal but happy life.

7 min read

A mother will do anything for her children, that's a fact. When at last I became pregnant after waiting for many years, I vowed to devote all my time and all my love to my child—God's greatest gift to me!

 

A few months into the pregnancy, I learned that there was a complication. You see, my unborn baby was diagnosed with hydrocephalus. I was devastated, but I knew that God would not forsake us, and that whatever happened, I would with continue the pregnancy.

 

I prayed hard during delivery. When I heard Gerard cry for the first time, I felt relieved and happy. But I didn't get to hold him after he was born, since he was taken and placed in the incubator right away because of another complication.

 

Later that day, I learned from the doctor that my baby had Arnold Chiari II malformation and needed surgery as soon as possible to avoid further complications (find out more about this condition from the Mayo Clinic).

The initial operation to correct his Hydrocephalus was done three days later, and a shunt was inserted to drain the excess fluid. As for the Spina Bifida, where part of the spinal cord and nerves were in a sac and were damaged, it was successfully removed 5 months later. But, because of L5 spinal cord damage, we were told to expect weakness and loss of sensation in the lower extremities.

 

Gerard's childhood years were not normal because we spent most of it in therapy. He needed occupational therapy every day when he was a baby because of poor head control or weak neck muscles. He would need to strengthen these muscle to be able to sit, stand, and walk normally later on in life. Luckily, we was able to walk on his own when he was three years old but with leg braces. Apart from these, he wore diapers because he had urinary and bowel incontinence.

 

These were just a few of the struggles he experienced as a child. Although things were overwhelming, we didn't lose faith and courage to face these challenges.

 

There were a lot of joyful moments too! I was advised to enter him early in pre-school, when he was 2 1/2 years old. Though Gerard was physically challenged, he excelled in school and was accelerated to Grade 1 when he was just 5 years old. Going up the stage to assist him in receiving his many academic awards was proof that although life is full of obstacles, you can always choose to press on towards your goals and succeed.

 

Gerard always has a sunny disposition despite his disability. As a young boy, he never grew tired of exploring his environment, discovering new talents (he can sing and beatbox like a pro), and making us laugh with his antics.

 

But when he was 10 years old, he underwent another major surgery for the Tethered Cord Syndrome. I've never known anybody who has so much courage and faith! I saw in his eyes that he wanted to live because he knew that he had a mission. And God answered our prayers for a successful surgery.

 

Growing up as a teenager was never without daily mobility challenges because he could only stand and walk for a few minutes, and suffered from abnormal gait. Plus, let's not forget, teenage problems. He started showing signs of depression, anxiety, and self-harm as he struggled with the realization that he can't do what other teens can.

 

We, as parents, struggled too. There were times when he just wanted to be done with it all. All we did was try to understand him, love him unconditionally, and constantly remind him that God allowed him to survive several surgeries because he has a mission in life.

 

This stage was a rollercoaster ride for the whole family. We learned to stick with and hold on to each other no matter what.

 

Gerard

 

Gerard is now 21 years old, still trying his best to live a not-so normal but happy life. There have been occasional outbursts, self-pity and depression, but he has learned to hold on to his faith.

 

As a mom, I realized a long time ago that Gerald needed more attention, care, and love than his younger brother. I just hope that now, he also realizes and values what he has accomplished through the years and that there are people who love him for who he is.

Reference

About The Writer

 

Eihdra GatchalianEihdra Gatchalian

Mom to a 20-year old special boy and a very sweet and kind 12-year old boy who mean the world to her. Wife to a very supportive hotelier, who never doubted she can survive any trial hurled her way. An advocate of several special needs groups. Works online as a virtual assistant, social media manager, and a mommy blogger. Trying to help change the world in her own small ways.

 

 

 

 

 

 

The views and opinions expressed by the writer are his/her own, and does not state or reflect those of Wyeth Nutrition and its principals.

 

 

A Victim of Mom Shaming? How to Handle It With Class by Lei Dimarucut-Sison, Source: https://www.smartparenting.com.ph/parenting/real-parenting/how-to-handle-mom-shaming-with-class-a00061-20190524

5 Types of Mom-Shaming—and How to Shut Them Down by Charlotte Hilton Andersen, Source: https://www.rd.com/advice/parenting/mom-shaming


 

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