Although our life with an extra chromosome is pretty ‘normal’ most of the time, it would not be true to say that it has not thrown us some challenges.
I am acutely aware that we are lucky– we have not had to face the terrifying surgeries and bouts of illness that so many other families do. Although Freddie’s health is good at the moment (touch wood), this has not always been the case. He was born with Transient Abnormal Myelopoesis, which a consultant from Birmingham Children’s Hospital later told us was a rare sub-type of Acute Myeloid Leukaemia. We also face an ongoing daily struggle with his sometimes very challenging behaviour.
I intend to write more about these issues in future posts; today, though it is barely 11.00 am, I am too exhausted. The schools are closed because of the snow and we are out of our routine. Today is one of our less ‘normal’ days.