“Stories make us more alive, more human, more courageous, more loving.” -Madeleine L’Engle
Perhaps one of the most powerful tools of understanding is story, and so we begin this issue by giving voice to a loving mother and a story of daily courage.
January 4, 2012
What a crazy day it was! My beautiful daughter was unexpectedly born four weeks early (so not like her mother who is usually fashionably late!). Lily Kate was in the NICU for a week and sent home with an apnea monitor. Every now and then she would stop breathing and her heart rate would drop, but no one had any explanation except for her prematurity. Six weeks after returning home, we got rid of the monitor and went about our happy lives with our new daughter.
May 4, 2012
At Lily Kate’s 4-month check up, I brought up some concerns to our doctor. So just to be safe she ordered a head ultrasound through Lily Kate’s soft spot. The results of the test came back “abnormal” – that’s all we were told. I remember being really scared and wondering what in the world this all could mean. The pediatrician indicated that Lily Kate might be suffering from “water on the brain.” We were really scared now, and feeling the weight of uncertainty… Little did we know that this fear was nothing compared to what we were about to face.
May 18, 2012
Lily Kate was sent to get a brain MRI. I watched as my baby girl was sedated and put in the MRI machine for an hour to get a full brain scan. I remember that day well. She was not happy about getting stuck multiple times because the nurses couldn’t find a vein for the sedation medicine. Nor was she happy about not eating for several hours. And as for me… well, I was a nervous wreck. There is nothing like seeing your 5-month old baby lay seemingly helpless in a huge machine, all the while wondering how in the world we ended up here. The test felt like an eternity, but nothing felt as long as the weekend ahead – a weekend spent waiting for results that would change our lives forever…
Monday, May 21, 2012
Around 5pm, Lily Kate and I were called into the pediatrician’s office to get the MRI report. We soon found out that my precious daughter didn’t have hydrocephalus or “water on the brain.” Instead, it was something much different. I’ll never forget her words to me… “Theresa, Lily Kate’s brain is not growing normally.” I froze. I felt nothing, could hear nothing, time stood still. I finally opened my mouth and asked, “What? I don’t understand?” I looked at my daughter in disbelief. “What do you mean my daughter’s brain isn’t growing normally?” She went on to explain the best she could with the limited information she had about one of the rarest brain malformations in the world that my daughter was suffering from (Subcortical Bandlike Heterotopia, and Colpocephaly). We learned that the outcome could range anywhere from normal to severe mental retardation and that there was no way to predict the outcome, but that she was at risk for intellectual and motor delays and seizures. The news just kept coming, and I just kept thinking I was in a bad dream. That I would wake up and it would all go away. But it didn’t go away that day. And it hasn’t gone away. But it has gotten easier in some ways. In other ways it’s gotten harder.
November 9, 2012
Lily Kate had her first seizure (the 2nd worst day of my life). This would become yet another part of the ongoing journey filled with unexpected challenges that we would face – medications, dietary changes and the constant wondering whether she will be the same child once the seizures pass.
December 5, 2012
Throughout these months, one of my biggest questions is always, “What can I do for Lily Kate to help her have the best possible life that she can have?” And the one thing everyone keeps saying is therapy, therapy, therapy! So we go to therapy… A LOT. Three days a week we are in physical therapy, occupational therapy and speech therapy. The other four days of the week, I am her therapist. My goal is to eventually teach her to do a perfect Tendu, but until then we work on the basics – sitting, transitioning from sitting to quadruped, rocking on all fours, handling things with her hands, feeding properly, saying “mama” (which she is really good at!), and all the other things an 11-month old is supposed to be doing. But let me tell you how far this little one has come… She has gone from not reaching for anything to getting into everything she can reach. She has gone from having to sit in a very supportive baby chair to sitting independently. She is almost crawling…. oh, she is so close. She is hilarious! Her sounds and laughs are music to my ears. She reaches for her mama and acts much like any other baby her age, only with some developmental delays. But she is my joy! Even when I’m feeling so down and scared and confused as to why all this is happening, I look at Lily Kate and know she has a purpose. I know that my Lily Kate will be a miracle. So I am not giving up hope. I still have dreams for her.
December 20, 2012
After putting Lily Kate down for a nap, I walked out of the room, heard some crying, looked at the monitor and found my little girl sitting up! I ran back into the room, even more surprised as I saw her trying to pull up to standing on the crib rail. She’s got a fierce determination (like her mama). And on this day, I realized something — perhaps our miracle isn’t going to be seen medically. Maybe it will be seen in the daily overcoming – as we look at our amazing and courageous girl, wondering how in the world she keeps moving forward, amidst the challenges of her circumstances.
March 26, 2014
Walking. A word I’ve been thinking about since we found out about her diagnosis. Will she walk? Or “No she’s not walking yet.” The pain of saying that statement over and over again was excruciating. But today is different. And has been different since she turned two in January. My Lily Kate is walking! Not very gracefully, but walking nonetheless. I’m so proud of her! We go on a walk outside everyday. You can see how proud she is of herself in her smile and excited expression. She continues to have 1-2 seizures per week, but thankfully, they are not regressive. This life, these challenges, teach us to find good in the small things, in the little triumphs. And we remain hopeful for answers. Our next plan of action is to begin the ketogenic diet — a diet that helps to control seizures in half of children suffering from seizures. Maybe this is our answer! And maybe we will be able to get her off some of the medications she is on. At only two years of age, Lily Kate takes 15 pills a day. This is enough to break a mother’s heart. But that heart finds hope in each smile, each laugh, each step, each new day, each developmental progression (slow, but sure), and each new opportunity to see her defy the odds. I can’t wait to see what other things she will achieve this year!
*Photo credit: Casey Comstock