People always say that they would never change anything about their children… that they are perfect as they are, but given the chance, I would change Dexter. My family is my purpose in life, but in October 2015 our world changed irrevocably, and forever, with our baby boy’s first MRI results. We were told Dexter had Neurofibromatosis (NF1) when he was just one year old, but nothing could have prepared us for those results.
For me the only thing harder than hearing that your perfect baby boy has tumours riddled throughout his tiny body, is hearing, repeatedly, that there is nothing any of his 14 specialists can do to help him. While his tumours are currently benign, they are growing and none of his specialists can tell us what the future holds for Dexter. We know that we won’t have him with us as long as we want, we know that this condition is degenerative, but that is all we know for certain.
How do you get up in the morning, put on a smile and greet your family with positivity, when these are the only certainties you have for your youngest child? I never considered that I would have to deal with something as devastating as a sick child. The decision to leave my job was difficult for me, financially it was a big ask of my family to try to survive on a single income, but more than all of that, emotionally, perhaps even selfishly, I was giving up the only part of myself that was just for me. I am struggling. This is a hard thing to admit, but it is the truth. I