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Words of Wisdom from a Brain Tumor Mom
In honor of Brain Tumor Awareness Month, I asked Melissa Mott—one of my favorite Brain Tumor Moms—a few questions. I really enjoy her posts on Facebook. More times than not, they make me laugh and made me think at the same time.
Melissa is the mom of Rally Kid Anna who was diagnosed with a pineoblastoma six years ago. Anna has beat her brain tumor, but side effects from her disease and treatment including blindness, short-term memory loss, mobility problems, hearing loss, permanent hair loss and stomach and endocrine issues. The brain tumor not only robbed Anna of her sight, but also of a future as the prima ballerina she was well on her way to becoming. Because of her radiation and chemotherapy treatments, Anna is at risk for secondary cancers, early menopause and bone loss. She must be constantly monitored and undergo MRIs annually to check for tumor recurrence.
Anna at a performance before cancer
With Melissa’s permission, I am sharing our conversation:
Dean: I love, love, love your posts. Your faith, honesty and humor—so real!
I have a question. If you could go back and talk to yourself (with the knowledge you have now), what would you tell yourself for the first year about this journey?
Melissa: Wow, Dean, thank you so much. That means a lot coming from you. Thank you for ALL you do!
Hmmm. That’s a hard one! I would say that it’s ok to break down and cry and not have to be strong all the time. I felt that first year that I had to hold it all together all the time or I was a failure.
I would say it’s ok to take sleep meds and get rest! Not only that, but it should be a priority, or you can’t make the long haul.
The biggest thing I would tell myself is to “let people help you!!”. I always felt like I was gonna inconvenience people if I took them up on an offer of help, that I was being a burden. Now that I get to be the “blesser” for folks, I realize I was cheating them of being a blessing.
Anna remembering a ballet routine
Dean: Melissa, great words full of truth that comes from experience! 💕 Can I ask another one?
Melissa: Of course!
Dean: What would you tell yourself three years into the journey of having a child with side effects from a brain tumor?
Melissa: You’re 3 years in. Wow, you’ve come a long way, baby.
I know you’re tired. You have to take more time to rest. Listen to your body and give yourself permission. It’s not neglecting your brain tumor kid to have some time away and to rest.
Enjoy this settling in. You’re gonna have more ahead with treatment effects, so breathe easy right now and just be.
It’s normal to have flashbacks and moments of unease. You’ve been through a lot.
Everyone else on this journey is going through this too. You’re not alone, even though it feels that way.
Make sure to find the good in each day and focus on that more than the challenges of caregiving.
Get to know this new version of your daughter and the new you.
No, things will never go back to how they were. It’s ok to visit there, but begin slowly, as you are able, to embrace this new life.
Find ways of making it work for your family. Make new traditions.
And don’t forget to reach out to and help others.
Anna with her parents and siblings
We really appreciate Melissa’s words of wisdom. What you just read is an actual Facebook exchange. Let us know if you like this interview format and if you have additional questions for Melissa, ask them below.
Dean Crowe
Founder & CEO
Dean,
Just wanted to drop a line to let you know I appreciate your continued support of this community and all that you do!
Even though Elliot lost his battle with cancer, I still have such a strong yearning to stay a part of others traveling this journey and so enjoy seeing your emails pop up in my inbox. Thank you for sharing the advice, hopes, fears, joys and triumphs of others that are still on this journey!
RALLY ON!!!