Terry and Eira’s adult son was diagnosed with a brain tumour in 2009, for Brain Tumour Awareness Month they’re sharing how their son’s diagnosis affects their day to day life.
A day in the life as parents of our son, who is (nearly 40) also a husband and dad to two wonderful, gorgeous children…
Our son was diagnosed with a grade 2 to 3 oligodendroglioma in 2009. The first thing to appreciate is while every day is different, they seem to be the same. For us that’s nearly 5000 days.
Every day starts off with hope. We hope today will be better than yesterday.
From here we often find ourselves being confused and emotional. Hence, we ebb and flow in every possible direction with respect to everyone’s healthcare and mental wellbeing, especially as it impacts on our son and his immediate family and friends. During this phase we know we have a choice, be positive and focus on living, having fun and enjoying, or be negative sulk and focus on sorrow/anger. During this period, we take strength from our son who, during the most demanding days will only accept positivity and this in turn gives us the strength we need.
However, while being positive is a huge attribute we are never far away from a reminder of the challenges a brain tumour brings. Reminders can be simple (e.g. a MRI scan), but more often than not they are complex and diverse in nature and over time not only has the regularity of reminders increased but their cognitive impact and their fatigue impact has increased. Hence, the challenge for us is to find a positive way of supporting our son, his wife and the grandchildren without interfering in their life. Working to manage and suppress reminders can increase parental anxiety e.g. waiting for outcomes of scans and treatments, supporting recovery time following seizures etc.
To help us through this phase we have turned to our family, our friends, our son’s work colleagues and to our support network. Without this group we would have been in a dark place from 2009, and it would have been getting darker by the day. We owe this group of unsung heroes everything. This group of unsung heroes ask for nothing and willingly give everything. They are the one’s who have helped us move forward and they are the ones who have helped us break down barriers. What we have learnt over time is we are not alone, and we are no longer afraid to ask. So, our message to everyone is ask, ask and ask again. There are people in your network who are able to help and can help. We have found that having the courage to ask for help and to share information and concerns has resulted in unconditional support and advice from family members, friends, our son’s work colleagues as well as the brilliant brainstrust team.
All of this means every day ends in the same way. We hope tomorrow will be better than today.
– Terry and Eira
Support brainstrust this Brain Tumour Awareness Month, help us give a voice to the all too often silent impact of a brain tumour by sharing these stories far and wide:
We’re fundraising to help us continue our vital services. Every penny raised throughout the month will help ensure that people have the support they need to live their best life possible in the face of the life changing impact of a brain tumour diagnosis.