First, you need to know that the overwhelming and mind-boggling support we receive from all of you - many whom don't even know us all that well - is one of the sustaining aspects of this whole experience. The insightful words of encouragement, the faithful prayers, the practical help and unexpected gifts all go a long way toward easing our burden and injecting joy where there isn't much. We feel buoyed and carried and propped and surrounded on every side by genuine love and interest. I will never catch up on all the thank you's I owe.
And it's actually because of this thankfulness that I feel like I can be honest and say that sometimes, it's just too hard to talk about it. All of it. I do fine with writing about it most of the time - it allows me time to think things through and dispense information at a comfortable rate. But there's something about the face-to-face or even the voice over the phone that is just unbearable at times. It's like people are looking to me for answers I don't have. And there's always the dreaded question: How's Collin? How do I answer that? The 'what' questions are so much easier than the 'how's or the 'why's - they're more specific and less complex. 'What did Collin do today?' or 'What is Collin's favorite Olympic event?' are much less daunting questions. I hate hate hate having to say that he's still having seizures, that he's not himself, that I have no idea what's wrong or what to do. I could say that he's good and that would be true: he's healthy, he's happy whenever he can wake all the way up, he's making progress on his NACD program in spite of everything, and he has everything he could possibly need. But I could also say that he's not good and that would be true, too: he can't get good sleep because of his seizures, he's totally out of it a lot of the time for some reason I can't figure out, he can't see and can't eat and can't sit up. So, I usually just end up saying that he's okay and hoping that the conversation will move on from there.
I think this is especially true during 'survival mode' times - times of particular stress or uncertainty that require every ounce of our concentration and energy. Like right now, for instance. I would much rather be talking things through in the company of friends instead of hunkered down at home learning this diet and calling doctors and counting seizures, but that's just not feasible. Plus - and this is another thing I can't really explain - I'm not ready yet for people to see Collin having seizures. It's too hard. It might not always be like that, but it is now.
Here comes the big BUT (wink wink, nudge nudge) - BUT, I do NOT want people to keep their distance. I never feel like saying 'Just leave us alone right now.' I never want my failure to call back or my inability to get together to be interpreted that way. We need you and appreciate you. I just want you to understand where we're coming from if we ever seem distant.
So, if you promise to keep checking on us, I promise to be honest if I don't want to talk about it.