There are times when I think the reassurance that we’re not crazy is about the best gift we can give each other. It can be very alienating when so many others just don’t understand the realities of our lives. We worry constantly, spend so much of our time putting out fires, and try to maintain what of ourselves that we can.

I’ve sort of thought about this in terms of losing a lot of the members of our ‘pre-diagnosis family’ (a number of friends, colleagues, etc. who for whatever reason we see rarely if at all anymore) but gaining a whole new ‘post-diagnosis family’ of parents, friends, professionals, supporters, and teammates who understand us and value our children for who they are and want to help them discover the best of who they are.

I grieve some of those losses, and I sometimes feel isolated because of it. I’ve gained so much too, so much that I can’t even begin to describe it. Parenting is the biggest challenge of my life, but great challenges can mean great opportunity. There are many days where that idea doesn’t help me much – since it also can mean great frustration, exhaustion, and despair – but many where it does. It just depends.

There’s nothing easy or straightforward about it. I try to just feel how I feel, be as OK with that as I can be, otherwise do the best I can, and give thanks for all the good things our kids bring to our lives. I believe if I can accomplish that, things will be OK. As with many things, easier said than done.

Hope things are going well for you.

Thank you for sharing your thoughts, i read these as often as i get updates sent to me, and i’m always thankful that you can spare the time to share these things with the world. Thank you xxx

@Barbara – Thanks for the rec on that book. My back pain is a fair amount better this week, though the week started with an “I can’t take this anymore. I’m getting really desperate.” comment to my chiropractor. One of the new exercises he gave me has gotten me from the bed to functional in the morning, which is a good start considering I still struggle to put my own socks on.

I’m also looking for something video-based that I can stick on the TV and do whenever I can carve out 15 minutes. I’m a pretty visual learner, but especially when it comes to learning anything with movement, if I don’t see it done, I’m hopeless about figuring out how to do it myself. Illustrations in a book are still good; seeing it on video is even better. I’ll see if she has any video-based stuff too. Perhaps our local B&N has a copy of her book I can leaf through.

@Kathy – Clearly I haven’t quite taken my own post to heart yet. Here I am weeks later and still struggling. But this too shall pass, even if it passes like a kidney stone. Hope your exercising is going well!

I can recommend a book by Lisa Morrone, PT. It’s on Amazon.

And, what a good/better reason for taking care of yourself – your child. And you know the saying, put the oxygen mask on yourself first.