I have two daughters. They are beautiful girls with powerful stories, and they have a lot in common. They both love dress up, bows, and painting their fingernails. They are both cute little dancers. They each have good friends and are social little girls.
And both had experiences as toddlers that make their brains look different than the average child.
It was a Sunday afternoon seven years ago when my husband and I were at lunch with our three month-old son and two-year old daughter. While she was eating, our daughter twisted her head in a way that was awkward and disturbing to watch. She didn’t seem to have control over it and she had never done anything like that before. It terrified me. I remember every little detail about that afternoon and the days that followed. The weird head jerky thing happened a couple of more times over the next day, which led to a visit to a pediatrician, where it affirmed what I suspected: she was having seizures. I spent the next week freaking out, crying, and researching everything I needed to know about epilepsy. Exactly one week after that first lunch with the weird head thing, we were preparing for an EEG that was scheduled for early the next morning.
We never made it to that EEG. Instead we took a midnight ride on an ambulance to an ER with an unresponsive child who couldn’t stop seizing. I sat on a hospital bed in the wee hours of the morning when a doctor came in to let us know that the CT they had done revealed a large mass. Instead of going to get that EEG, we were moving upstairs to ICU. They scheduled an MRI for first thing the next morning and told us that a pediatric neurosurgeon would be contacted immediately.
Four days later that little girl had surgery to remove a brain tumor. Almost all of it was removed that day. But every year, we go back to that hospital and she has an MRI. Then we have that excruciating wait to find out if the little speck that is left is still just a little speck that isn’t growing or changing. To complicate her story a little bit more, a year and a half after surgery she started having seizures again, which oddly enough turned out to not be related to the tumor, but instead a genetic form of epilepsy. Although this was less serious than the growing tumor that was swelling and causing her to seize, actually figuring out what was going on and the best course of treatment took quite a bit longer.
When you consider the amount of time that she has really been sick, it has not been a significant portion of her life. Her “sick days” are disproportionate to the enormous medical file that she has and the countless pediatric specialist appointments we have been to. But these experiences and those fears have marked us significantly. In fact, when she went back to the hospital for the first MRI after her surgery, I had a physical response to the emotion of being there. When they were struggling to find a good vein to get an IV started, she called for me. The needle and the blood didn’t bother me. But her scream took me back to the scariest night of my life. It’s hard to describe what it does to you as a mother when you see and hear your child so helpless. This many years later, I can barely write these words through the tears because the emotion is still so real. And when she cried for me that morning of her follow-up MRI because she wanted them to stop poking her, my body literally couldn’t handle the emotion I felt, so I passed out. The sound of the cry and the fear that my body felt was too much to handle.
Today, she seems very normal. If you didn’t know this part of her story, you could spend weeks with her and still have no idea. Those people who walked through those moments with us still see her as a miracle. But those who met us later – even though they know her history – don’t ever really think about that. Having epilepsy and being a brain tumor survivor doesn’t need to define her, and yet it is a very real part of her story. It is also a very real part of motherhood for me.
By the grace of God, I do not live in fear. But she had a tumor, and it is not all gone. She has had three types of seizures, and no one is exactly sure if these might resurface as she gets older because it’s a “real possibility.” So we have to walk in faith. We have to let go of that illusion of control that you have as a parent because we know that we are not in control of this. We have to have a scan of her brain every single year to make sure it hasn’t changed.
We will have this scan, forever. Even in our good news, the message we get is “the tumor appears stable so we will re-scan in a year unless you have problems.” Those aren’t exactly what most would consider words of comfort, but those words annually allow me to breathe a little and not go into panic mode every time she gets a headache or has an “off” day.
That experience was traumatic for both of us. No matter how many stable scans we experience, I always have a little bit of fear when make that annual appointment. And no matter how many times they are able to start her IV with only one poke, she always has a little fear that it will be another “multiple stick” experience.
Trauma stays with you.
My adopted daughter has also experienced trauma. The most significant parts of her trauma happened at nearly the same age as her sister, but it continued over years as she lived in multiple homes over the course of her short life. A scan of her brain would also show that it looks different. Did you know that the brains of children that have experienced childhood trauma look physically different? She looks and acts normal in a lot of ways, but the damage done during those early developmental years – those “building blocks” that are missing – can and will impact her over the course of her life.
I have become a student of the impact of trauma on a child, and I have a pretty good understanding of how that works. Even so, I can’t speak about this as a psychologist, therapist, or expert of any sort. But I can speak about it as a mother.
My daughter is doing really well. She is bonded with our other children and is happy to be a permanent part of our family. But, she has wounds. She has memories. She has trauma. And, like her older sister, we have no idea how this will affect her down the road.
I get the question often, "do they think that her fears and quirky behaviors will get better with stability and as she gets older?”
My answer to that is as certain as my answer to whether or not my older daughter will ever have another seizure or if that little speck of tumor will always remain a speck.
We don’t know.
We hope, and we pray. We are trained on the approaches that show promise for bringing healing to children from traumatic backgrounds. We have hours upon hours of training and have read the books and attended the conferences.
But at the end of the day, we have to be faithful where we can, and trust God with the unknown.
In many ways, our experiences with a brain tumor survivor have allowed us to have an extra level of empathy with our adopted daughter. When my oldest cries before an MRI, I cry with her. Because I know. I know why she feels scared. She has experienced too much not to.
With the younger one, I don’t always know why certain things make her feel scared, but because of our own trauma, I certainly understand how things from the past – even after years of stability – can still feel just as scary today. Child and family therapist Robyyn Gobbel explains this so well in her article, Trauma Doesn’t Tell Time.
As a mother, it’s sometimes hard to balance. When the oldest was four and overtired because of seizures, she would often misbehave and embarrass me in public. And I wanted to explain our situation to the glancing strangers, “do you have any idea what she has been through? She is on two different anti-epileptic medications and she still had five seizures this morning. Please cut her some slack! Please cut me some slack!”
When she was having a seizure, she was not physically able to respond to me. So I had to learn that there were times that it seemed as if she was ignoring me or not paying attention, when in reality she legitimately didn’t know what was going on around her.
Likewise, when my adopted child is in fight, flight, or freeze mode, she doesn’t have access to the part of her brain that allows her to process what I am saying. Even though she is safe, that doesn’t mean there is felt safety. So if her brain legitimately feels as if it is in survival mode, then she is not physiologically capable of responding to me in the same manner as she would when she does feel safe. And when she’s dysregulated and “acting up” in public, I find myself feeling very much like I did during those seizure days where I want to explain or defend my parenting techniques.
And of course, there is still “normal” toddler behavior and children who are wise enough to manipulate, so that complicates things. I don’t always get it right. I have been slack at times when nothing was wrong other than a stubborn spirit. And I have tried to discipline at times when “misbehavior” is actually just a fear-based response that comes from something from her past.
It is not easy. It can be very frustrating to try and make sense of, and yet it is an important struggle in order for me to love and lead her well. It’s complicated. It requires patience, grace, and an understanding of what she is actually capable of.
But my experience in dealing with a disease that is seen and understood in one daughter’s brain has given me a great passion in advocating for the “disease” that is invisible, and often misunderstood, in my other daughter’s brain.
My girls, they have battle scars. I see the one early in the morning as I fix her hair and brush over that physical reminder of her story. I see it when we go to the dentist or the doctor and she asks a million questions for reassurance. I see it in her tear-filled eyes every time I tell the hospital business office, yes, we know how to get to radiology. We’ve been here before.
I see the other one's late at night, when she wakes up terrified. I see it in her anxious and jumpy behavior on an unstructured day when she doesn’t know what is coming next. I see it in her fears, even though I don’t know where they all come from.
There are hard moments, but the uncertainty that is real with my girls has been a gift that has strengthened my faith. It has forced me to release that grip on all four of my children that makes me feel as if they will turn out just right if I do things a certain way. It has made me appreciate the good days because I have experienced the bad ones.
May is brain tumor awareness month and foster care awareness month. To learn more about these important causes, visit www.abta.org and www.childwelfare.gov/fostercaremonth.
A version of this article originally appeared on www.nataliewpatterson.com.