“Sometimes the things we can’t change end up changing us.”
August 22, 2022
Moving to Colorado Springs from a small town in Illinois was a huge life change that was super exciting but nerve wracking all at the same time. I did not have a job lined up yet and planned to just use my money I had saved up for a while until I found something that I’d enjoy as well as work around my crazy college schedule. Within the first couple days of being moved to Colorado, I was introduced to the Cadenas family as my family knew them from back home. They were there as a contact in case my boyfriend, Gavin, and I ever needed anything and a familiar face in the Springs as we did not know anyone yet. Soon this contact in my phone became a fulltime job. I took on nannying for their family full time, Monday through Friday, after just a month or two of babysitting every now and then. I fell absolutely in love with these kids. I mean, I considered them family after just a few weeks of knowing them.
Lucy specifically I attached very quickly. Of course before babysitting the kids, I was made aware of her disorder. She has had seizures off and on from the time she was born and after a not so pleasant process with the doctors, was diagnosed with Hemimegalencephaly. I was shown videos of what her seizures look like and how to care for her if she were to have one. I thought, “okay, this could happen and I need to be ready for it.”
I participated in Lucy’s different therapies and watched as this little warrior met milestones doctors thought she never would achieve. I held her through most of her naps (sorry mom), getting the perfect setup to where I could get Liam asleep on one couch, or sometimes we were in the bedroom, and Lucy in my arms on the other perfectly to where I could do homework with my right arm. This was the everyday routine. This became such a normal routine that I had forgotten Lucy even had a disability. Until one afternoon nap I was holding her and something wasn’t right. I could see her eyes veering to the right and her fists began to form slightly.
I thought, “okay… maybe she is just heavily sleeping and in some crazy dream.” But after a few seconds had gone by, I knew that this wasn’t just her dreaming or sleeping heavily. This was the first seizure she would have with me and immediately after it was over, she jolted awake and I knew she had just had a seizure. I was so anxious to tell Janey as I knew it would crush her as this was the first one she had in months. It broke my heart but also brought me back to the realization that this is Lucy’s life.
Since knowing Lucy, this was the only seizure she had ever had Almost exactly 1 year since her last ones that had her in the NICU. So it kind of brought me back to reality. After this, I was a bit anxious during nap times and watched her like a hawk. When I say I never let her out of my sight, and honestly out of my arms during a nap, I mean I felt every breath Lucy took while sleeping. But then some time had passed. I went back to my normal routines of picking up after the kids during nap times and getting some homework done at the table. Now, this went on for over a year until Lucy was around two years old. Between that time we were just going through the weekly routines of therapies and other extracurricular activities that the kids were involved in. I went back into that worry free mindset.
Until the summer of 2021. Lucy had begun having more frequent seizures. Grand mal seizures that would last up to an hour with little pauses in between. I would keep the bigger kids overnight as Lucy would spend nights in the hospital with little to no answers as to why the emergency medication isn’t bringing her out of these seizures or what the triggers may be. I was definitely more on edge but I wouldn’t say I was watching her like a hawk as I was never around when she had these seizures. Then July 8th came. Only a couple weeks before I would begin my full time student teaching at an Elementary school up north and I would have to part ways with nannying. I still remember this day like it just happened yesterday. I had all the kids down for naps and Lucy was not having it. She just wanted to play and hangout with me and refused to take a nap. I finally told her she HAS to nap as I know that one of the triggers can be lack of sleep. I turned on the Disney movie Raya and the Last Dragon for probably the 200th time since it came out. She finally had laid down and started to let herself relax and fall asleep. I opened my Qdoba and sat next to her and watched the movie. About two minutes into her falling asleep, I felt her foot shaking against my leg. She was seizing. Not a little barely 30 second seizure like the one she had in my arms when she was an infant, a grand mal seizure. I immediately looked at my watch to begin to time it so we can administer her emergency seizure medication if she doesn’t bring herself out of it. I yelled for Janey as she was working upstairs. We met on the landing of the stairs as I held Lucy. Not being able to do anything but support her little body. 5 minutes passed and we began to administer her emergency seizure medication. It wasn’t helping her come out of it. I dialed 911 and we waited for the ambulance to arrive. Only a few minutes before the medics got there, she had stopped seizing. She was very unaware but still able to hear her other mom’s voice (Caity) through the phone and sign for her. I finally was able to smile a little seeing her somewhat responsive. After the medics checked on her vitals, they left and she went with her mom to take a shower as she threw up her mac and cheese from lunch all over me, typical Lucy ;). I heard my name being yelled from upstairs and ran up there to see what was going on. She had begun slipping into another seizure. I took Lucy out of the shower as her mom started to pack some things and decided to go directly to the hospital. Caity had just arrived rushing home from work. Within a few minutes they were on their way there.
This day still gives me anxiety. It took a very big toll on me. I was trained to handle this situation and knew the steps I needed to take to care for her, but never did I want it to happen. At the moment I felt so out of control. I was so used to being in control of their routine and handling her behavior but this was out of my control. Since that day, I still get anxiety being around Lucy when she is sleeping. She has still not had another seizure while with me, but continues to have them frequently. The unknown of when and if she could have a seizure is unsettling.
But man is that girl strong. She is the most resilient little girl I have ever met. She never fails to amaze me and prove to everyone that she is a warrior. I will forever hold a special bond with her and continue to be a part of her life to watch her grow and push through more obstacles set in her way to accomplish things people said she could never do. That sassy, smart, independent, and beautiful little girl is never going to give up. She will always strive to do exactly what she wants and when she wants and I can’t wait to continue to watch her along the way.
― Taylor J Colson – Board Member, Secretary of “Lucy’s Warrior Foundation”