by Zerina Manuel Amien*
At the tender age of 11 before my daughter was first diagnosed with stage 4 ovarian cancer, little did I know that the world of childhood cancer even existed, up until we stepped into the oncology unit…. Kids of all ages, some with little smiles on their faces playing with toys, others feeling physically ill just staring blankly at the walls….
I remember my daughter asking, with fear in her voice “Mommy, why are we here?”…. and instead of answering her, I directed that same question to God “Please tell me why we are here?”
I was so shocked that I couldn’t even cry, instead I asked them “What are we going to do to make her better?”
And with that came a lot of hospital stays, tests, operations, needles, drawing blood, blood transfusions, chemotherapy and the list goes on…
Still trying to come to terms with the fact that my child had cancer and then also dealing with the fact that it was already advanced… I thought to myself…
How did I miss this? Did I not feed her properly? How did this happen? What if the chemo doesn’t work? What are we going to do? How do I tell the family?
There were so many questions that I couldn’t answer…. But we had no choice but to continue our journey.
Just 4 months later we were told there was nothing more they could do for her, the chemo didn’t do its job….
And I thought…. How can you say this??? She didn’t even finish grade 5 yet, she didn’t start high school yet, she didn’t get to experience so many things… SHE DIDN’T!!! A month later I had to bury my child, my eldest and only daughter…. The one who was always so helpful, the big sister to her little brother, the joy in our house…
And then it hit me, she was gone… the child I spent many days and nights taking care of, was gone….. snatched away from us. And now almost 19 months later, I still feel her close to me, I can sometimes still smell her skin or imagine hearing her laugh… and I still find myself asking “did this really happen”
My days of trying to be strong had come crashing down with full force. I miss the days when we were carefree, when we had the most precious gift called TIME.
Time I thought I would always have, to say the things I needed to say and to do the things we always wanted to do.
Make time for those who are important to us as we don’t know how much time we have left.
Palliative care played a major role in our lives, not only did it help in relieving and controlling Naaziyah’s excruciating body pain by aromatherapy massaging, it was also her safe haven where she felt that she could open up herself to someone without being judged, she could talk about things that she felt uncomfortable about expressing to anyone else, even her mom… although most times I could only but imagine what she was feeling, she didn’t always open up to me with conversation, instead she used moments with her dad to just sit with him and cry and she didn’t want anyone to ask questions, all she wanted was to release….
Not only did Palliative care assist my daughter in so many ways, they assisted our entire family, especially me… I could say things that I couldn’t tell anyone else because not many understood what I was going through, not many understood how I felt as a mother with a dying child, and not many would’ve understood my broken relationship with God either.
(Photo: Naaziyah with her baby brother)
We both looked forward to our sessions once or twice a week, it was our platform to express ourselves confidentially in ways that we could never do, sometimes together, most times separately, but most of all we always left every single time with a better understanding about her illness and dealing with the emotional stress that accompanied it…
As a mother I didn’t have the heart to tell my child she was dying, and deep down I think she already knew… there were many signs like when her then two-year-old brother would ask her to do something for him and she would say “you need to learn how to do things yourself, I’m not always going to be around to help you and mommy is tired”. On the day that Naaziyah passed away, I had the honour of being alone with her while she took her last breath, I could tell her that I loved her and will always remember her, I could tell her that the fight is over and she needs to let go, and I could also tell her that I will be sad but I will be ok…