I am the last child of my mother. My parents made it clear they would never bubble wrap me or my siblings. While they cared deeply for their children and kept a close eye on them, they also made sure I must experience the same things of other children my age, even though I was born with Spina Bifida.
I remember my mom often saying “one day we won’t be around to do this for me”.
That’s why I must learn to do things for myself. This usually referred to daily chores such as doing dishes, weekly laundry and others. While some of those tasks took longer for me than my siblings, this was an incredibly valuable lesson in my independence.
Everyone lives with their own set of circumstances, however when I look back, I deeply appreciate that my parents did their best to let me be a kid not just a with a disability.
What is growing up with Spina Bifida like? People often ask me what it is like to grow up with a disability. Two words I feel can describe it best are unique and challenging. Every person’s experience of living with Spina Bifida is unique to them. Just as every case of Spina Bifida is different.
In my case, I needed a shunt at birth since I acquired Hydrocephalus too, which is common with others. Some have just Spina Bifida alone. Some use wheelchairs for mobility, some can walk on their own without a mobility aid.
For me, I use a crutch. That however did not stop me from leaving a very active life. Living with a disability often means facing more challenges than many of the people around me. From frequent doctor visits and occasional surgeries plus ongoing mobility issues.
Individuals impacted by Spina Bifida face a wide variety of new experiences and challenges. As children with Spina Bifida may long for the feeling of being normal overtime, however, they come to see that their particular circumstances have played a powerful role in shaping what they are today.
As a person with a disability, I manage many additional tasks such as performing frequent skin checks to prevent breakdown and also catheterisation. These are tasks that individuals without Spina Bifida typically do not need to consider but for someone living with the condition, managing them is essential to maintain a high quality life.
The only person who knows if we are being accountable is ourselves. We always answer to the person looking back to us in the mirror and the only way to do that positivity is to be persistent.
Being persistent can require significant energy, some days may prove more difficult than others. However, I believe there is always an opportunity to find creative solutions in life.