Brisan and Parker Stults | Living with Niemann-Pick Type C

Archive for June, 2014

The feeling is strange. Flat out no other way to state how Brisan not physically being here anymore feels. I think the feeling is a normal feeling because death isn't suppose to feel normal. It is a separation of your body and soul. Throw your emotions on top of that and you have the case of the “what in the world” is going on feelings.

After 90 days as Jennifer reminded me, we both nodded in agreement of “is that all”? It kinda of feels like forever ago… although the moment, the day is still very raw. The scary thoughts are you feel that you are forgetting Brisan because it is the longest period of our life that we have never physically touched and cared for him. Contrary to popular belief, it is a false feeling because that simply isn't true. A feeling that we have to reject at the gate because that is far from the truth. Sounds great, doesn't it? Practicing it is an entirely different thing.

His presence blessed our family but on a grander scale, blessed others in ways we've couldn't even fathom. His bed is essentially the same as he left our home. His pump bag is still hanging the way we left it (looking pretty gnarly though…).

As Days Progress

As the days progress, personally speaking I miss him more everyday. Thoughts at some point overwhelm me and Jennifer. Watching videos or looking at pictures have a different meaning now. I know before you would go back and watch that video and think… one day he won't be here. Bittersweet but you're never prepared. Blinded sided by a MAC truck (or Peterbuilt… whatever…). I know Jennifer feels similar.

Mothers and Fathers dream of what their children will become one day. We just didn't know that our kiddos would become inspirational leaders to others with the sacrifice of having a rare disease that would and will claim their life early. Read the rest of this entry »