5 Ways a Brain Tumor Changed Me

brain surgery scar

For the sake of those who may be new visitors here, the brain tumor I’m referring to in the title of this post is not my own.

The brain tumor that I’m talking about is the one my daughter, Bethany was diagnosed with way back in the year 2000 and this is my story of how that brain tumor changed me!

*This post contains affiliate links.

special needs family

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Before Bethany was diagnosed with a pilocytic astrocytoma, we were pretty much a holistic health, all natural remedies kind of a family.

Heck, most of our kids were born at home. Hand delivered by my husband without the use of drugs or medications of any kind.

So, suddenly being thrust into the hospital and medical world was like culture shock for me.

Having a child with a brain tumor and needing to be admitted into a hospital to undergo life threatening brain surgery changed me from being an “all natural” kind of mom into a “conventional medicine” kind of mom!

And gone were any judgmental attitudes that I may have ever harbored toward other “conventional medicine” kind of moms!

 

After living in the hospital for two months, (and I mean that quite literally!  I never even went outside or left Bethany’s bedside other than to use the rest room), I experienced culture shock once again when she was finally discharged and we were able to return back home.

Which brings me to another one of the first changes that I noticed within myself.

After Bethany and I arrived back home, I realized that I could never again be that “totally involved in every one of my other kids’ activities” kind of mom anymore.

Because of the magnitude of Bethany’s newly acquired special needs, challenges, disabilities, and new super high maintenance personality it was no longer feasible for me to just pack her up and take her along to every practice, game, and/or other enrichment activity that my other kids were involved in.

In fact, instead of being the mom who all the other moms could rely on, I suddenly became the mom that needed to rely on them to pick up and drop off my kids to such activities.

It hurt that I would never again be able to fully “be there” for all my children, in quite the same way as I always had been.

And so I was forced to get creative and learn new ways of “being there” for them and making sure they felt loved and cared about.

Until I had a child with a life threatening illness I rarely ever gave a thought to the fact that there are way too many (actually, even one is too many) children suffering with critical illnesses and that there are so many people who have disabilities living in a hostile, unfriendly, and unaccommodating world.

Before Bethany got sick and became disabled, (and I’m greatly ashamed to admit this), sick children and the issues and challenges of the disabled were not something that I was consciously concerned about.

Of course I felt bad for them and donated money to charitable organizations that helped the sick and disabled whenever I could, but I felt that that was the extent of my duty and responsibility.

Now I believe it is not only my responsibility, but it’s also become my passion to advocate for and show the world how beautiful and courageous, my daughter and others like her are.

It’s my desire to fight for the rights of the sick and disabled, and demand that the world accept, include, accommodate and treat all people who are suffering with chronic illness and living with special challenges with kindness, dignity, and respect.

 

Until I became aware of the need to begin fighting for the rights of my sick and disabled daughter, (and again, I’m ashamed to admit this),  I was not interested in the the issues and injustices that African Americans, the LGBTQ communities, and other minority groups suffer and live with on a daily basis.

It wasn’t because I didn’t care about these people,  I guess it was because their problems didn’t affect me or any of my loved ones so I didn’t believe their issues and concerns were my responsibility

Now I believe it is not only my responsibility, but it has also become my passion to do everything within my power to ensure that people of every ability, race, religion, gender, sexual preference, and gender identity enjoy the same rights and privileges that I do as a straight, white woman.

Well, actually, every human being should enjoy the same rights and privileges that straight, white men enjoy!

 

And last, but certainly not least,  having a daughter who had a brain tumor forced me to be less selfish and to put others’ wants and needs before my own.

Before Bethany’s brain tumor diagnosis, I cared and worried about such stupid and trivial concerns that, in the great, big, grand scheme of things really did not matter one darned little bit!

My husband and I would fight and argue about the dumbest, most ridiculously selfish stuff!

Now even though I do regress back into selfishness on occasion and my husband and I still have pointless and ridiculous arguments now and again, we both purpose to remain focused on keeping Bethany as healthy as possible and providing everyone  else in our family with the healthiest and happiest life possible!

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To recap: The four ways my daughter’s brain tumor changed me are:

  1. I changed from rarely needing to take my children to a doctor into being a mom who always seems to be at one doctor’s office or another! I went from being an “all natural” mom to being a “conventional medicine” mom and quit judging other “conventional medicine” moms.
  2. I realized I would never again be able to fully “be there” for all my other children as I always had been in the past and  found other ways to show them that I loved and cared about them.
  3. I became passionate about advocating for the rights of the sick and disabled.
  4. I became passionate about advocating for the rights of African Americans, the LGBTQ communities, and other minority groups
  5. I became less selfish and began  focusing on providing our family with the healthiest and happiest life possible.

Have you been changed by the illness or disability of a child? If so, tell me about your experience in the comments! Let’s get a conversation going!


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*This post may contain affiliate links. Thanks in advance if you should decide to purchase an item through one of our links at not extra cost to you. 100% of all commissions earned from sales go directly toward providing a better quality of life for our daughter, Bethany, a brave brain tumor survivor and special girl!

If you have a minute, please check out our Amazon Store where I have put together a list of my favorite books and resources and Bethany’s favorite games and products and our Etsy Shop where you can instantly download vintage book illustrations and prints of Bethany’s paintings!

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