It’s been three months since Maddilyn was diagnosed with NMDA Encephalitis. The initial critical parts of her illness are over, and now we are learning how to settle into the flow of managing a chronic condition. It’s tough; most days. She is getting better every day. In large, she’s regain almost all normal functioning. She struggles with processing information, remembering things, attention, impulsivity, irritability, and sleeping. To top it off, her medications cause other uncomfortable symptoms like constantly being itchy, fluid retention, bloating, excessive urination, and insatiable hunger. Basically, we have a really cranky kid on our hands 90% of the time; but she’s seizure free, she’s walking and talking, jumping and laughing, and for that I’m grateful.
I was talking to a friend earlier to day, and I was telling her about all the complications and stuggles we’ve been having with Maddi post treatment, and I stopped myself, and I said: “I teeter between being really thankful and blessed that she is alive and healthy, and feeling guilty for complaining about what’s still wrong.” She told me I had every right to complain. Every right to want Maddi to be back to normal. Every right to mourn what we’ve lost and what we’ve been through. I haven’t been kind to myself in the last few months. When I think about what Maddi’s been through, and how far she’s come, I feel guilty for feeling sad that she’s not back to “normal,” because I know there are other NMDA cases out that have not faired as well as she has, and certaintly that’s not fair, right?
By trade, I’m a Therapist. I’m trained to identify and recognize mental health issues, but I would never have believed that I was suffering from PTSD, if it hadn’t been for someone else pointing it out to me. “Me? PTSD? No. I’m in control. I’m holding it together. I can be at the hospital and not fall apart. My kid is alive! Nothing traumatic there!” When I stopped and reflected on it, it was obvious pretty early on that I was suffering from PTSD. PTSD or Post Traumatic Stress Disorder, is a mental health condition that is triggered by a terrifying event. It can cause flashbacks, nightmares, severe anxiety, as well as uncontrollable thoughts about the event. After Maddi’s second hospitalization and ICU stay, I would have intrusive thoughts about Maddi laying in her hospital bed, foaming at the mouth and struggling to breath. They’d happen at the strangest times. Walking through the grocery store, sweeping the kitchen floor, and sitting in traffic. In those moments, I would be overcome with fear and anxiety, and guilt. I would well up with tears, and It would take everything inside of me to not lose control and stop hysterically crying. I think about that morning, and how I had almost rolled over and went back to sleep. What if I had done that? Would Maddi still be alive? Just this evening, I was watching an episode of Grey’s Anatomy, and there was a little girl, about Maddi’s age who was struggling to talk over a breathing tube, and I had a flashback of Maddi being intubated in the ICU, fighting the breathing tube, wanting to talk to us; scared and confused. I just started crying. I live in constant fear that she will relapse. I worry about leaving her with her Grandmother, because what if I’m not there, and she gets sick again? I haven’t slept well in months, because I’m terrified to sleep. I’m terrified that something will happen while I’m asleep, and I won’t know, or I won’t get to her in time. I know that these fears are irrational, because she is being monitored, and her treatment is aggressive, but before she got sick I lived with this ignorance that my kids were safe and healthy. Now that ignorance is gone, and I miss it. I miss the ignorance that bad things happen to innocent children, for no reason, at any time.
This is the stuff they don’t tell you. The Doctors didn’t prepare me or Jason for how we would change, or what side effects we would suffer as a result of Maddi’s illness and treatment. I feel like they tried to prepare us to care for the new Maddi, and how to keep her safe and healthy now, but no mention of how this event would forever change our lives. I know one day I will feel better. I will sleep at night without the fear of something happening. Maddi will be better. I believe this. I hope and pray for this day. The smoke is cleared. She’s not critical anymore. She’s alive, and living life with a chronic illness, and this is what we’re left with. This is what I’m left with. The reality is May 2016 will be forever burned into my brain as the most terrifying month of my life. I will heal, and I will get better, but it will never go away. As time goes on, I will hurt less. The fear and anxiety will fade, but it is forever apart of me, and there’s nothing I can do about that.