I haven’t written in a while, even though there has been a lot on my mind. I just didn’t know how to put my thoughts into words this time. I didn’t want to keep being a downer, dark, or depressed sounding. So I kept putting this post off. As I kept thinking about it, I would tell myself that I AM a downer, dark and depressed. Why shouldn’t I be? Why should I hide the fact that I am sad that I don’t have my baby boy in my life anymore? Why should I pretend that life is back to normal and perfect, when it’s clearly not! I have never been the type of person to sugar coat things, why should I start now? Don’t get me wrong, we have our happy family moments. We enjoy each other’s company to the fullest, and we continue to move forward in our changed lives. This blog is so I can express myself as a way of “healing”, but also to help other families going through a similar ordeal. I want those families to know they are not alone, and they are not “crazy” in the way they are thinking. Hell, maybe we all are crazy, but this crazy is expected and accepted. This blog is also for the families who have healthy active children. I want you to appreciate every moment you have with your child. I want you to understand that life changes in an instant and there is no stopping it, no matter how much you beg and plead (trust me I tried).
Lastly, I hope this blog brings some understanding and empathy for families battling childhood cancer. It truly is a lifelong struggle. Parents who have had to bury their child NEVER get over it, NEVER. On the outside they may look “fine” but on the inside is a struggle to stay afloat. I have spoken to mothers and fathers who buried their child over 10 years ago—–no, it doesn’t get easy but they learn to deal with their day to day. Always thinking of their child who should be 15, 28 or even 34 years old now. There is always thoughts about who their child would have been and how they would have looked.
The families who are still going through the battle with childhood cancer or has a child in remission, they too have a difficult life. There will always be that uneasy fear lurking in the shadows. Will the cancer return? Does this fever mean his cancer is spreading? We have to stay another X # of days in the hospital because her cell count was 0. Whatever the case, whatever their current thoughts, they too are going through a struggle. So be kind to these families. Be gentle. Be understanding. Our minds are constantly racing about our child, treatment plans, what if’s, Dr appointment or even trying to get food to stay down.
Last week was the first day of school. I really don’t have much to say about it. Valin went to school without Madox last year and that was devastating. I think all my grief and shock came out last September, leaving me in a fog this year. Maybe I am just numb, going through the motions. It actually snuck up on us pretty quickly, and I didn’t like the fact it was already September. This would have been the year Valin went to a new school while Madox stayed at their elementary school. It would have been the first time they were apart for school or an activity. Only one year, then they would be together again. Madox was sad that he wouldn’t see Valin in the halls but was excited to be the oldest grade in the school. Another thing I will wonder about, another thing I was robbed of. Now Valin is solo in his new school, with nothing to look forward to in the upcoming years. He will always be without his brother now.
Children that are fighting or lost the battle against DIPG.
Meet All DIPG Warriors