When my oldest daughter Amira turned three, she started losing some of her milestones. Where she was walking, she started cruising furniture. She seemed weaker and we started noticing regression. As young and new parents, my husband and I started feeling concerned and took her to the pediatrician to find out what was going on. The pediatrician seemed alarmed but couldn’t tell us what she thought was going on, but suggested that we go see a neurologist and made a referral. I remembered that day vividly because I just sat in my car after that appointment and cried because I knew that something was happening to my baby girl and I felt powerless in what I could do to help her. Believe it or not, our challenge was in getting to the neurologist—it took about eight months to finally be seen. He ran a battery of tests that were inconclusive and ended up prescribing various medicines and vitamins to give her more strength, to stop potential seizures from occurring, and to fight this unknown disease that was ailing her body. Over a year and a half, my husband and I watched her health decline after several month-long hospital stays, various surgeries, many and varied therapies, and numerous doctor visits. After one of those stays, Amira’s mysterious illness was classified as a Degenerative Neurological Disorder. We did all we knew to do and yet at the age of four and a half (4.5), she passed away one morning in her sleep in 2010.
Because of our experience with Amira, when we had other children later on, we kept what she endured as an internal health-check measure for them. So, years later, when one of our twin girls, Kelyn, started having repeated ear infections, seemed a bit unsteady in her steps, and wasn’t developing as well as her twin speech-wise around the age of two, we decided to deal with the immediate health issues first—ear infections, to rule that out. Ear surgery didn’t resolve the issue and other problems arose with her mobility, speech, and nutrition. She went from moving about to fearing to move. She went from slowly acquiring language to non-verbal. She went from being a feisty, independent toddler to complete reliance on others for her needs. This was heart-breaking to witness a second time. The difference this time was that we had two other children so this progression impacted all of us.
Unlike Amira, we were able to get Kelyn to a neurologist in a very short time because of our awesome pediatrician and our advocacy. Hassan, Kelyn, and I underwent genetic testing and because some of Amira’s cells were kept in a lab in NY, it was confirmed that Kelyn had a rare genetic disease called Niemann Pick C (NPC). This is an often-fatal disease that impacts your total-body function and causes regression. It is childhood Alzheimer’s in nature. It is often called a silent killer because there is a lack of awareness about it even in the medical field and many times, it causes delayed diagnosis and needed care. Through Kelyn’s diagnosis, we finally had an answer to the mystery of Amira’s illness—NPC.
At the time, we didn’t realize that in our journey with Amira, we went from being unknowledgeable and victims of sorts, to advocates and partners in the health of our daughter Kelyn. It became my job to make sure she had every medical supply and equipment she needed, as well as therapies. I was the expert when it came to Kelyn and her care and acted as such when I dealt with the myriad of medical professionals and experts we encountered along the way. This meant boldly challenging them when I disagreed about her advice, making sure they knew everything about her; (I kept copious notes on every surgery, procedure, medication, hospitalizations, medical conditions, etc.); and switching providers in search of the most knowledgeable about her illness. While my husband was the researcher on all things NPC, I was her person. As a caretaker, I lived to give her life. My life was no longer about my hopes and dreams, instead, it was about providing her with the best quality of life and assembling the best team I could to make that happen. This meant very little sleep and I became very-well versed in caring for all of her needs, especially medical.
At one of Kelyn’s doctor’s visits, one doctor surprised me by asking me how I was handling the stress of caring for Kelyn’s unique and demanding needs and encouraged me to go back and start seeing my counselor for my own self-care. He reminded me that I couldn’t be my best for her if I didn’t get what I needed. I took his advice and resumed therapy among other things. Unfortunately, Kelyn also passed away in her sleep on March 9, 2020.
In my last meeting with my counselor before my daughter Kelyn passed away, he suggested that I may be dealing with something called Survivor’s Guilt. One day, because I was wide awake at three again, I decided to finally explore what this was. According to Dr. Nancy Sherman, in a blog for “Psychology Today,” defines survivor’s guilt as a continuous cycle of “counterfactual thoughts that you could have or should have done otherwise, though in fact you did nothing wrong.” Another blogger, Dr. Diana Raab, highlights that survivors may be susceptible to this due to unsettled, losses from the past. That night, I had a deep realization: In short, I have been troubled by the false notion that I could have saved my daughters’ lives if…
I have so many ifs.
If only I had stayed awake a little longer.
If only I had woken up sooner…
The truth is, I had no control over the timing of their deaths. They had rare, incurable/fatal, genetic diseases. In both cases, I was in deep sleep and extremely exhausted. Although I slept close by in the same room, as they slipped away from this life into eternity. I couldn’t do anything to extend their lives here on earth—here with me—with us, for that matter. I could not heal them. In both cases, once I realized something was wrong, I immediately jumped into emergency mode. Yet, I was rendered powerless against God’s eternal clock. This hurts.
I have come to realize that I have to stop this Survivor’s Guilt cycle. I have been and I am traumatized. (Never articulated this to anyone but my husband before.) All I know is that I tried my best. This is my invisible limp—living with something that causes a hiccup in my step, unseen by others. I live with the guilt that I am here while they aren’t. I bear the pain of knowing that no matter what I did, the outcome didn’t change. I continue to live life because I have to keep going and really, because I want to. However, my experience and memories of my daughters live on in and with me.