I recently went in for an appointment with my physician about my knee. He told me the only way to resolve the issue was to have a scope. As he explained the procedure he told me of the risks – my mind just stopped processing anymore after he said anethesia. I had heard about the risks of anesthesia so many times with Lydia. Every single time she went under I was told that because she was special needs I was looking at an even a higher risk of something happening while being under. It was always hard to watch her go as they pushed the bed into surgery trying to hold in the fears of what could go wrong but so badly praying it wouldn’t.
In June 2013 Lydia had her first overnight EEG where what seemed like a million wires were hooked up to her head and after she was placed in her metal crib to see if and what seizures were present. I remember them wanting to put an IV in her just in case they needed to rescue her from a seizure. My cocky, arrogant self at the time told them no – she hadn’t seized since March and I hadn’t visibly seen any since then. I was convinced she wouldn’t seize. They agreed and the whole time she was being monitored I was feeling very confident her seizures hadn’t changed.
The next morning the pediatrician from the floor came in. I had barely opened my eyes from the rough night of sleep on the hospital’s plastic bed and she was standing there. Barely any light in the room she was towering over me. She could tell I had just woke up and was still in a fog however that was not deterring her from leaving. She continued to stand there and pause over Lydia’s sleeping body. There were no words spoken at this point but her mere body language sent me into a tailspin. It was as if she was already telling me my little girl had a death sentence. As if she was ready to say “I’m so sorry for your loss.”
My throat tightened, my head started to hurt and I started to feel like a scared kid needing my mommy. I swallowed hard and thought about how I was once again by myself hearing the bomb that was about to be dropped on me. I wanted to run, to hide but I sat there waiting for her next words. She spoke in a normal tone not caring about waking my sleeping girl as she proceeded to tell me Lydia had a rare nocturnal seizure disorder. I remember my friend, Jennifer, once saying nocturnal seizure disorders are bad, bad, bad. I could feel tears forming as my body tensed up. She proceeded to say she needed to tell me briefly about the disorder so I could start crafting questions for the neurologist because he would be in later to expand on this seizure type.
I had this unwritten rule of trying to not cry in front of Lydia but when the physician left I hunched over on the end of that stupid plastic bed with my feet grounded on the floor and my head in my hands and cried. Cried like I did when I received her Kleefstra diagnosis. Sobbed. The physician’s demeanor, my medical knowledge, my mother’s intuition all felt how bad this really was. I didn’t need to hear the words death, fatal or lethal…I knew.
It seemed like hours but Lydia’s neurologist finally came in the room and accompanying him was the physician from earlier as well as Lydia’s special needs nurse case manager. Her nurse was the person who sat in the room to be my second set of ears. She asked the medical questions I would forget and take notes when I couldn’t hold a pen or process what I was about to write. I hadn’t needed her in a room with me for a long time…emotionally I had been handling things with Lydia well. But that day…I’m glad she was there.
We sat for more than an hour talking about Lydia’s seizures, the possible treatments and our options – limited by the way. And we heard how very bad, very, very, very bad this was. After what seemed like forever and me trying to hold it together so I could ask the tough questions and try to take notes they left. And I was there….alone again in my thoughts and looking at my precious little girl staring back at me.
On the epilepsy monitoring unit (EMU) where Lydia was you aren’t allowed to leave the room. You are to stay there and press a button if your child seizes so they know what you are seeing and can help if needed. I began to sob again with my daughter hearing and feeling every emotion. I couldn’t run. I couldn’t hide. I got good at hiding all those years but not this time. I called Tom and my mom and with both of them on the phone with me I could barely speak or utter a word to them through the tears. I remember my mother asking me to breathe and relax so they could hear me. I remember Tom asking frantically “what do you need? What can I do?” My reply “get me out of here…I can’t do this, I can’t be here.” And with that he was on his way.
I remember packing up my things and crying the whole time. I then fed Lydia and did my duties but felt like a postpartum mother who had a bout of anger or depression with her child for this new, bad, bad diagnosis. I changed her diaper and waited for Tom to come. I remember lightly kissing Lydia and quickly leaving.
I left for almost 3 days and didn’t come back. I barely called. The first night Devin had a baseball game and I stood off to the side hoping no one would speak to me, telling me their gripes about their life when I was devastated with Lydia’s life hanging in the balance with this new, stupid seizure disorder. The next day my son had church with his school and I sat next to a childhood friend. As she hugged me, not knowing at the time about Lydia she said “I’m glad you came” and with that I cried. Those who had read on facebook or were just being kind put their hands on my shoulder and hugged me after the service.
Finally, after those 3 days I came back to relieve Tom and finally bring her home. Those 3 days I spent time with my boys, I cried and I got angry. On the last day Tom needed to go and I went to relieve him and wait it out for her to be discharged. By the time I returned I had gone through the emotional roller coaster and finally pulled it together to get here. I vowed to myself that I would help her fight…I had to. That is what we had done in the past that is what we would do again.
The next 11 months we tried different options and each time went back to check if the seizures were gone. Sometimes as I lay next to her bed at the hospital during those overnight checks I would pray relentlessly. I would just ask God to help us…keep her seizure free. Sometimes we would get the good news and sometimes we wouldn’t. An emotional journey to say the least (along with all of her other health problems). In the end (well, I didn’t know it was the end) I was fighting for alternative treatments for her. At one point, another mother asked me WHY I was doing what I was doing and I looked at her as if it was a silly question…my response “to save her life.”
Recently, I met with someone that use to see Lydia in the medical realm. We had a nice, long chat and one of the questions she asked me was “did you think she would die?” I told her about that morning when the Dr. entered the room, how it felt and how I realized then that this was beyond bad. My mind knew this could mean her life.
And this conversation got me to thinking – I was too late. I, alone, couldn’t save her. I prayed, I fought, I listened to the physicians tell me to add this drug or change that one. I watched Lydia regress. I watched her be so doped up that the little girl who never showed emotion crawled onto my lap last January, arms around my neck and started to cry. I held her with my tears falling on her long brown hair and I told her I was so sorry and I was trying everything I could to help her. Through both our tears I asked her to hang on… to give me time. But even through all of this I realized one important thing – while my mind thought she could die…my heart never thought she would.