Tonight's picture was taken in December of 2002. Mattie was eight months old and sitting in one of his favorite toys or devices.... the jumper. This thing attached to any door frame. Then Mattie could sit in it and jump up and down to his heart's content. Mattie loved movement and being free. He wasn't a crawler, EVER! The jumper allowed him to stand and move around without assistance which he loved and then when he grew tired of jumping, we would swing him in the jumper. This was one of the MUST have items on our list with Mattie!
Quote of the day: Don't allow your mind to tell your heart what to do. The mind gives up easily. ~ Paulo Coelho
I think tonight's quote is so applicable to the work that I do each day with the Foundation. When many of us choose a professional, we typically select something that our minds are GOOD at! That we can wrap our head around. Something that makes sense to us, maybe a skill we have, or something that we love doing and understand and want to do! It can be problematic to be regulated by one's heart rather than one's mind. When you make decisions with your heart, the decisions can be more impulsive, they can be more emotionally based and they at times can be more raw and based on something more personal. This has pluses and minuses.
With the Foundation, all paths somehow lead back to Mattie! It is kind of like the North Star! He is our compass and guides many decisions. Again this can be a blessing and a curse, it is a curse because at times I feel like Don Quixote in search of a windmill trying to fix a wrong. But of course the wrong was committed a long time ago in September of 2008, when Mattie died, and that can't be repaired. Yet in my work, my windmill still spins in hope of finding that fix. Of course logically nothing I do will ever repair this hole. I can find myself on conference calls, like today, and I hear professionals talking about a topic I LIVED! Especially when issues like bereavement come up. To me bereavement and loss are not theory. They are real. These are issues that are pervasive, they impact my life today, tomorrow, and into the future. But I am not alone. I feel like I represent all the other bereaved parents out there who lost a child to cancer. When I hear conversations that try to lump "our" issues in with other issues related to cancer, I can't take it! It is like petting a cat backwards, and usually that is when my heart takes over, and forget the mind. I have developed a new tag line.... bereaved parents are the "forgotten ones." Once our children die, we fall off the radar scope of most care institutions. If you are lucky enough to have a care institution follow you one year post death, you are lucky, but after that point, then what? Some hospitals may invite you back year after year to their annual remembrance ceremony in the hospital chapel, but in my mind that doesn't constitute support. That is once a year, what happens all the other days in the year? What happens during the holidays? How are you supposed to integrate back into a world which doesn't understand grief and loss in general, much less the death of a child?
With the death of Mattie, my mind has been taken hostage by my heart. I am aware of this in myself and I do try to keep it in check since I do know that not every one can manage my outbursts at times. Yet my outbursts are not usually intentionally directed at people. It may be perceived that way, but that is the challenge of working on something that you are emotionally connected to.... at times your heart will always outweigh the mind.
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