Who else brought their baby home with hospice nurses and social workers there to greet you to try and make the pain of watching your child die over the next few years as easy as possible? Who else brought a baby home anticipating that no matter what you did for them, it wasn’t going to make a difference because at some point, this would all be over? To say I was angry was an understatement. I was robbed and defeated. I wanted to take my baby’s place and have him spared. I wanted someone to call from CHOP and tell me that they had been mistaken or that they got his medical records mixed up with someone else’s. Who could I talk to? Who could I turn to? I had plenty of support. But nobody who really knew what I was going through. Nobody who knew what it felt like. And with all the support I did have through family, friends, and hospice…I had never felt so alone in my life.
Since talking to these moms through Parent to Parent, I have started imagining a new world of possibilities – a world of support, help, and realizing the people who are truly going to be there for you. The possibilities of what our child is going to be able to do instead of what he won’t be able to do. The possibilities of doing everything that we had planned as a family, but having it be so much more worthwhile because we know things could be so incredibly different. We have the possibilities of giving our child a wonderful quality of life. I realize that these moms have done it. And we can too!
If you would like more information about the Parent to Parent organization please click HERE. If you are feel lost and alone and think you are the only one dealing with a certain disorder, they may be able to help.