There's an amazing group for special needs families in the Atlanta area called FOCUS (Families Of Children Under Stress). They provide a myriad of resources, activities and support for families like mine.
We have attended a few events they offer for medically fragile children, but most often they visit us in the hospital. During one visit back in January, I was having a rough day. The isolation that this life can bring sometimes hits you like a ton of bricks. Sitting in a hospital room for weeks on end by yourself can bring you down, though I try and keep myself busy and not have too many pity parties. On this day I was having a party, and my friend from FOCUS suggested I write about it. So I did.
The article was published in their May-June 2012 newsletter: http://www.focus-ga.org/wp-content/uploads/2012/05/2012.may-june-newsletter.pdf
It was by no means meant to hurt anyone's feelings, or make anyone feel guilty. It is simply the truth about how I sometimes feel, and I think a lot of parents in our situation feel, and I wanted to write about it because the FOCUS newsletter is primarily meant as a resource for parents and it's encouraging to know that you are not alone.
Since the goal of this blog is to bring insight into what our lives are like, I decided to include the article here.