Sound of Surviving Blog

As a pediatric brain tumor patient, I never really realized or appreciated how much my mom or dad did for me or thought about what it must be like for them. I mean, I did a little bit, but now, as an adult, I’ve grasped how much more they did for me and how much emotion they must have hidden, trying to be strong for me and with me. I recently read through the notebook my mom used as a journal while I was in the hospital. There is so much left unsaid; between the lines of this notebook. But reading her handwriting, I could feel the fear, the worry, and the pain behind them as she’d written questions or notes such as, “It would be helpful to have a clear definition of the stroke she had.” I can’t imagine the thoughts racing through her and my dad’s minds as all of this brand-new medical terminology became part of their daily lives overnight. I can’t imagine how terrifying this was for them, trying to grasp these brand-new concepts, and, at the same time, having to try to explain these things to my older brothers, and to the rest of our family. I can’t imagine watching doctors come in and out, not knowing all of their names, and watching as they give my daughter IVs full of medicine. In one of her entries, my mom says, “How much medicine can one small child take?” I can’t begin to fathom the fear that enveloped her. And yet, I never knew it, or if I did, didn’t give it much thought.

And in between these fear and heartache-ridden notes, my mom wrote bible verses (such as “Be still and know that I am God”-Psalm 46:10), kept track of medicines and fluid intake and output, doctors’ reports and their names & specialties, lists of thank yous to write to family and friends, prayers for my brothers, and for my roommates and their families, and so much more. I remember one time, my mom saying, “I felt like I wasn’t even in my body; I felt like I was just going through the motions. I just wanted to pick you up and run away with you, for it all to be a dream”. I can’t even imagine the devastation and distress she must have felt.

In the back of this very same notebook, my dad must’ve written little letters and notes to me while I was in surgery, as they are dated 04/01/08, my surgery date. I read his words and can feel the fear and the desperateness in them. Phrases like “I wish I could take all the pain from you, and give it to me,” or “We need to be strong and have faith in the Lord, and we can accomplish anything. I know it is going to be hard but you can do it.”

It’s funny how reading something from 16 years ago can make you truly realize that no matter how old you get, your parents will always worry about you and wish they could take away the hurt and the heartaches you’re experiencing. I still see this today, hidden in the words of the texts I get daily, asking how I’m feeling or if my headache is better. I am not a parent yet, so I still can’t imagine how hard it must’ve been and still is for them to have gone through all of this, but I hope they know they have done and are still doing an amazing job.