How many times will my heart break?

A friend came over last night to bring us dinner. It was a very kind and generous gesture, for which I am grateful. I've been feeling distant from this friend, however, because I don't think she really understands where I'm at with this whole thing. It's her nature to be cheerful, and I feel like she just wants to cheer me up, and I neither want nor need cheering up right now. I need space. I need empathy and compassion. I don't want to be encouraged to see the bright side of this whole thing. I need to be allowed to grieve, to get through this emotional roller coaster so that I can, hopefully, one day, come out the other side, a better, stronger person.

Along with dinner, she brought me a copy of the book, Babies With Down Syndrome. When I saw it, my stomach turned over. It was evidence to me that she has not read this blog, which hurts because I created it specifically to keep everyone who is interested updated on Finn . . . and it has become a way for me to express my feelings and hopefully give the people in my life a better understanding of what my family and I are going through.

As I posted here a while back, when Finn was still in the hospital, I had gotten that book, Babies With Down Syndrome, and it through me into somewhat of a tailspin. That is the book that informed me that my son is, and always will be, mentally retarded. That is the book that informed me that my son is sterile. That is the book that informed me that he is prone to a plethora of medical issues over his lifetime - which, by the way, is expected to be shorter than a normal, average person. After a couple chapters, I had to put the book away. It did not offer me hope. It felt like a sentencing.

So when my friend brought me yet another copy of this book last night, I felt a rising panic. I told her that I already have the book, but she left it here anyway, so I decided that this morning I would make it one of my errands to take it to Barnes & Noble and see if I could return it for a store credit or something. As I waited in line at the checkout counter, I found myself holding the book with the title facing in so nobody could see it, and I found myself holding Finn in his carrier the same way - facing in towards me so that nobody could look at him. I find myself going back and forth between wanting people to know about him up front, so that there is no wondering, and not wanting anyone to know, so that there is no judgment or pity.

They wouldn't take it back without a reciept. I understood. I didn't want this book, though, that feels like poison. It felt like some sort of message: "You're stuck with this book, just like you're stuck with this baby." On my way out of the store, I dumped it into the garbage can. I got into my truck and cried . . . and I've been crying ever since.

I feel defeated. The fact of the matter is that Finn is never going to outgrow Down syndrome. He will never be cured of it. It is something he and our family have to live with forevermore.

I'm sure that in my present sleep deprived state, my emotions are running even higher than usual, and maybe that's as good an explanation as anything for why I'm feeling so low today. I want to sleep. And I want to wake up from this bad dream. I want to wake up and find myself pushing out a healthy baby, a baby with fat rolls on his arms and legs, a baby who doesn't fill me with worry and fear and sorrow.

When will this all stop hurting so much?