There is also a huge sense of loss… more than just Zach dying. I have realized that I am missing roles that I never knew I had. … I believe that every parent has a number of roles that we do, most of them are done without us even realizing it. However, as I was transferring birthdays and anniversaries into the new calendar I realized that if you take out all the hospitalizations, all the weights, all the notes that had to do with mito, I don’t have much left. I lost the roles of being the scheduler, driver, nurse, and mom. I lost the ability to brag on a weight gain of 2 oz, something that to the normal person means nothing. There will be no birthdays with weights under them. Things that no one understands and that while I can’t explain it either my heart hurts.
So what do I want you to know by reading this… don’t take the little things for granted. While the frustrations of being the driving, psychologist, chef, etc can get to us at times not having those roles can be far worse. It is a lot of work to do all the things that we do for our loved ones. If you have them all ripped away (even knowing that you one day would lose them) it is a huge sense of loss and even of being worthless. Love all those that are near you and love all that you are given, they are huge blessings no matter who much work. If I had known during Zach's life what I know now... I would have loved more, hugged more, and been more willing. I am realizing now how much I miss him.