Even though I love, adore, and accept my precious Bethany just the way she is, I often wonder what she would be like if she had never had a brain tumor.
The theory is that Bethany was actually born with her brain tumor, but it wasn’t until she was two years old that we began noticing its troubling symptoms.
And it wasn’t until after she suffered a stroke and brain damage during the surgery to remove it that her life was changed forever.
Then when she was five years old, she was also diagnosed with autism for good measure!
The theory behind her autism is that she was born with it and then everything else that happened to her worsened it!
But up until she got sick, she seemed like a perfectly typical two year old to us.
Although, looking back at old videos, we do think we see early signs of autism now.
But whatever her actual disability history is, it wasn’t until after suffering such horrendous brain damage that:
- Bethany began having the debilitating seizures that constantly threatened to destroy her life for twelve years.
- Her left side was significantly impaired.
- She lost part of her vision.
- She couldn’t sit up, stand, or walk.
- She couldn’t talk.
- She began displaying more obvious autistic like behaviors.
- She began having occasional aggressive and violent meltdowns.
- She permanently became a two year old emotionally and intellectually.
When Bethany was four years old, I was desperately hoping to find someone to stay with her so I could attend my other daughter, Rebekah’s dance recital.
There was no way that she could have tolerated sitting in a dark, noisy, and crowded auditorium to attend.
I’m happy to say that my son, Micah, offered to stay with her that day, so I could attend the recital.
But while I was sitting in that darkened auditorium enjoying the dance recital and the adorable little kids the same age as Bethany skipped onto stage, it shockingly hit me like a ton of vicious bricks.
My heart sank and I began to sob because at that exact moment, I realized Bethany might never be able to join a dance class.
In fact, that was the first time I realized that there would probably be a lot of things in life that Bethany would never be able to do all because of that horrible brain tumor.
Sometimes, now, I wonder what Bethany would be like if she had never had a brain tumor.
- What would her personality be like?
- Would she still have that pesky stubborn streak?
- Would she be perky and bubbly?
- Would she be an active athlete?
- Would she be super feminine girly girl?
- Would she be a studious bookworm?
- Would she have a boyfriend or a girfriend?
- Would she be in college right now?
- Would she have a job?
I know many parents who have children with disabilities say they would never change a thing about their child’s situation, but… If I had the power to change a few things about Bethany’s life I certainly would.
If I could, I would:
- Erase every. single. seizure she has ever had.
- Erase every. single. second of her aggressive behavior, because when she is raging, I believe she is also suffering.
- Replace every. single. second of her struggles with triumphs.
- Have prevented that nasty, evil pilocytic astrocytoma from ever growing in her teeny tiny, two year old brain.
However, on the other hand, I am thrilled to be able to say that 18 years after her brain tumor diagnosis, Bethany has astonished us all with her accomplishments and capabilities!
She has persevered through all her pain, suffering, and seizures to create quite a satisfying and happy little life for herself!
She also loves her social and fitness club where she meets her friends every week and one of their activities is dance class!!
She also loves to swim at the YMCA, go shopping, hunt for bugs, ride roller coasters, go to the beach, visit her siblings and so much more!
- Would you change anything about your child’s situation?
- Do you ever wonder what your child would be like if he or she didn’t have those special needs?
*A version of this post was first published on October 22, 2015.