Holidays don’t get easier, regardless how long time has passed. Halloween was a month ago and I felt it was just as hard as previous years. Past years I tried so hard to fake it by decorating the house inside and out. Pumpkins would be carved days before. Costumes planned and purchased. Sugar cookies baked and decorated. The excitement was in the air. This year I felt such a weight on me. It felt so heavy, so constricting. Even though I tried to encourage myself into doing our normal traditions, I ended up failing and nothing ended up happening.
No cookies were baked. Our home wasn’t decorated outside with only a few things inside. Our pumpkins were purchased 2 days before, and carved the night before halloween. Costumes were not on the radar, throwing together something we found at home the day of. It didn’t seem like I was the only one feeling this way, as Marco and Valin weren’t pushing for anything either. We just kept moving through the motions of the every day.
What many of you don’t understand, is how much energy and work it takes to fake going through the passing of life. It sounds easy to just go along with it all but it is truly exhausting. The simplicity of even getting up out of bed every morning can take a lot of coaxing from oneself. Movement for purpose takes thought and reasoning from those who have lost a child. Knowing the need to converse with people, to look happy, to laugh, when all you feel is dead inside is very difficult.
Being affected by such a loss will never leave us. We will never forget who our child was, could be and could never be. We will not forget the day of diagnosis, the fight he had, the slow and terrifying decline and of course his death. Those days will never leave us. Yet here we are. Getting up every morning, going to work and living life like nothing ever happened.
Children that are fighting or lost the battle against DIPG.
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