Tonight's picture was taken in June of 2009. Mattie was in the physical therapy clinic of Georgetown University Hospital and on either side of him were Anna (physical therapist) and Linda (child life specialist). Anna understood that therapy for Mattie had to be very hands on and engaging, otherwise Mattie would tune out and wouldn't participate. It was particularly important that Anna engage Mattie in order to keep his body moving and to maintain some sort of muscle strength, which wasn't easy given how weak and debilitated he was from treatment.
Quote of the day: Let’s move past the stigma. Though in the past it may have been taboo to talk about a child who died, let’s move on. Let’s move on for the children, who deserve to be remembered. And let’s move on for the parents, who deserve a chance to tell their story. ~ Lexi Behrndt
I recently joined Facebook as a personal user. I of course was a Facebook user before for the Foundation but never had a personal account. I established a personal account not necessarily by choice, but I decided to do this because of Facebook's decision to close down our Foundation's profile page. Now that I am on Facebook, I find it rather ironic, that just like in my actual life, in my electronic life there are two populations that I mingle with.... friends who lead regular lives with their children and those friends who have been touched by cancer. I am amazed in a way how Facebook has become a rather electronic support group that people can reach out to folks all over the place on all sorts of issues. Though of course to me it is a very impersonal and public sort of support. I can see that Facebook can instantly help get your message out there and with that you can see that you aren't alone, which is greatly helpful, but on the other hand it is very hard to know who you are really talking to and to develop meaningful connections (once you start chatting with people who are friends of friends of friends). So I do not know where I am at or what my opinion is with Facebook, other than I have seen many, many postings this week from childhood cancer families and read about the pain of these children's treatment and those who are dying. This compounds the ones I already know about. It is a lot to absorb!
My friend Annie, sent Peter and I this article entitled, Why we should talk about our children who have passed. I included the link below. I found it very meaningful because it was written by a mom who lost a child, who has website called Scribbles and Crumbs in which she write articles devoted to the loss of a child, and basically the simple fact that she is dispelling society's myth that there is a set time frame that one grieves and then must move on to be considered psychologically well, healthy, and balanced. Quite on the contrary, being able to live with the memory of one's child, to talk about one's child openly, and to reflect on one's loss with others is healthy. Being asked to bottle up the reality is what produces the dysfunction, anger, and disenfranchised feeling within society.
As I wrote to one mom today who lost her child six months ago.... it is not about moving on, it is about finding a way to move forward each day while keeping the memory of your child alive.
http://www.scribblesandcrumbs.com/2015/02/11/why-we-should-talk-about-our-children-who-have-passed/
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