Ok...so you all like me because sometimes I am totally honest, right?
I'm pretty jealous right now. I'm jealous of all the people who have perfectly healthy babies. I'm jealous that they get to wake up in the middle of the night to their cries. I wake up in the middle of the night to emptiness.
I'm jealous of the people who complain about their children. Who are so tired of their children asserting their independence and personality. And I know it has to be hard to be a parent of a 2 year old. But I would give anything to know what would have set James off in a temper tantrum. And I know it's silly, but I wonder what it would have been. Would it have been what he wore? Or a special toy? Or shoes? What would he have been particular about?
Ok- and I told you I am on a roll with the jealousy- I'm even jealous of breast cancer research. I know, weird. But I was trying to do some research on rhabdoid tumors and whether they could be caused by an epigenetic response (basically if something like nutrition could cause a change in the proteins on top of the DNA that would cause the change in the gene). There is so little research. So then I was trying to do some research on breast milk and whether that has an effect on your DNA. I searched probably 15 scholarly journals for "breast milk". Not a single article or study came up about children. However, thousands came up about breast cancer. And I don't think there shouldn't be research about breast cancer- I just am jealous that we know so little about AT/RT and I wish we knew more.
I'm jealous of people who get to have normal lives. Who get to go to Gymboree. Who get to play with their kids. Who get to hear "I love you Mommy", even if it is few and far between. Who get their own version of "Jamesie kisses".
And I know the pain that happens when you lose a child first hand- its awful. And I'm not here to say whether deciding that is right or wrong for them. But knowing what I know now about what all would have happened, I can't imagine my life without James a part of it. Even though he's gone, he is still very much a part of my life. But then, also knowing what I know now, I would hate for him to have to suffer. As a parent, you never want your child to suffer.
Maybe this experience has shown me that every decision is not always black and white. Most are shades of gray.
I know I am so random. This week is really rough. If you have an extra prayers, I would be forever grateful if you would send them my way.
Oh, how I wish we were having that party this year. That we were the ones blissfully unaware of just how painful life could be.