About the most helpful way anyone described it to me was like this. We grieve the loss of our former dreams, and at some point we begin to look toward the future and opportunities for creating new dreams and writing new stories. You can do both. And I’d go as far as to say that you have to get well into that grief before you can move forward.

Over time I’ve come to realize that it is my son who is changing me. He has become my teacher more than I am his. He’s taught me to look at all the hard, tired places inside myself and deal with what’s there. He’s challenged me and helped me to do things I never thought I could do. And I am by far the better person for it.

If I have any advice to offer anyone it’s that the only way forward is through it, and just make one step at a time. Don’t try to understand it or absorb it all at once. It’s impossible anyway.

Many days the best thing you can do is be with your child, look at him, and just sit quietly and breathe, even if it’s just for five minutes. Don’t think about all the things you feel like you have to do or figure out. Reflect for a few minutes on all the wonderful things about him, and do absolutely nothing else except be there.

We wrote some posts on grief that capture our emotions about those days pretty well.

Just take it a little bit at a time. There’s a huge community of parents to draw on as you need us. We’ve been there just as other parents have been in places we’ve not yet gotten to. A lot of times it feels like we’re running a relay.

We’ve learned a lot about how much goodness there is in others. If you reach out for help, people will be there.

It’s hard, especially right around diagnosis time. We did some posts about that as well, and some posts about “1 year after diagnosis.” There is grief, and as I read somewhere, “you don’t get over grief. You just get through it.” If you need to talk to someone offline from here, please feel free to email us!