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• It’s ok if it’s not perfect
• You learn as you go
• An honest account
• I wish I could have seen what was coming

It's ok if it's not perfect

It’s ok if it’s not perfect. Just keep trying to achieve what your objective is and don’t let it get you down if your A1-C’s don’t test out well. Try to assess the reason why, correct it, and keep going forward.

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You learn as you go

I wish I knew everything that I know now when she was diagnosed. It would be that much easier. You learn as you go. You know, she has her up and downs on days. She has her good days. She’s been having lows everyday for the past week. No explanation of why. Because the day before she was going low, she was really high.  But you just learn as you go and you just take it all in as you go.  Everybody’s different. And now that’s she’s growing up, her hormones and puberty are going to come in and everything, and that’s a whole other story.

-Mother

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An honest account

I was so disjointed in the beginning--so anxious, so tired. I was afraid that the kids would look back and not know what had happened to our family. So I started a journal with my mother to help the kids look back and understand what the whole first year was about. I wrote with her for two years and at the end we had 250 pages, so my mother being a writer had an agent already and the agent took the book and we edited it. We did it for the kids, but on the other hand if you look at what’s available in the book stores, I don’t think there’s an honest account or an in-depth account of a family moving from the really hard part with enough help to show that it can get better, with some ideas of how you can make it better and how you can pull together as a family. I just felt sort of a moral responsibility after a while to get it out there to try and help other people who felt as lonely as I did because I was desperate for a book like this and there wasn’t anything.

-Mother

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I wish I could have seen what was coming

I wish I could have looked back and shown myself what it’s like now because I think it’s such an unknown that it’s a tremendous change. You just can’t underestimate what it’s like to have this earth shaking realignment of the world all of a sudden. And for me, I just didn’t know. I was so terrified to think five years from now, what is he going to look like? How sick is he going to be? Will my marriage make it through this? Will Abby get disenfranchised from the family and just be sick of our stress and be out as a teenager doing something crazy? So I really wish I could have seen what was coming, which is that we’re way better off.

-Mother

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