Friday, June 08, 2007

The funny thing about blogging is that, unlike a diary, a blog is written for an imagined audience. So when things get heavy, you have to decide just how much you want to share with those who might read it. Which is a large part of the reason this space has seen no updates since March. Don't get me wrong - things are really good at the moment, certainly about as good as they can be within a difficult context. But the past few months have brought with them a lot of serious thought, hard work, self-examination, and open-ended questions. Sharing all that in detail just hasn't seemed like it would help us get anywhere, or indeed even wind down at the end of the day.
But here we are at last - in Mississippi again, having exhausted the few distractions we could count on during Cal's therapy days, and ready to share some of what's been going on.
We're almost halfway through our stay here, and it's great to see everyone here again and see how Callum gets back into this routine. He seems to have a little new movement in his hips, and his hands are no longer stuck in the heavy-metal devil horns position, which is pretty exciting (even though the devil horns always looked good in photos). His metal salute always perplexed me - Susan here at Futures said his extended pointer fingers reflected a really switched-on cortex - i.e. Cal was in a hyper-conscious mental state without having all the unconscious stuff in place; Chuck, Cal's O.T. in Baltimore, said it had to do with the functionality of different nerve sets governing different muscle groups in his hands. Anyway, he's using his whole hands now to some extent, and he can pick up and feed himself lightweight finger foods like shoestring potatoes or veggie crisps. He is talking almost non-stop, with some cool new words like "plum," and "butterfly." Yesterday at lunch he requested to eat pear by name. He can also repeat little musical phrases when you sing to him (he's good at fanfares) and the other day when we were singing "What Goes On" to him (we brought guitars this time), he shook a rattle along with us, more or less in time. He LOVES books more than ever,and we love reading with him. His tastes at mealtimes are really broadening too, which is fun. He ate lentil dal with spinach for the first time today.
He's also entered a new "whiny" phase, which mostly seems to reflect a need to be challenged, to do new stuff ... we are really glad it's happening, because socially/intellectually it seems exactly right for his age.
On the downside, he's developed a clearly observable scoliosis betweeen his shoulderblades, which is a spot that's hard to address with therapy or with orthopedics. We are quietly embracing all the positive stuff, always encouraging of any new thing Callum can do, yet there is also always the specter of the degnerative aspect of SMA. On one hand, it's pragmatic to think about it, but it's a waste of precious energy to wonder if and when these little milestones might be taken away. The future is just not known, and we have to look at that in a positive frame of mind.

Our trip to Seattle back in April was pretty mind-blowing. We finally got to meet Dietrich Klinghardt again after having met him for the first time a few years ago, and it was his first time meeting Cal. The weekend as a whole was exhausting. We planned our trip to coincide with Dietrich's seminar, which focused on treating autism but touched on a lot of other "incurable" neurological problems as well, and we attended almost the whole program (Friday through Sunday inclusive), which gave us a lot of food for thought. Cal was a trooper. We had to make the most of our time there, so we scheduled our first meeting with Dietrich at his practice on the night we flew in, and Cal barely slept on the plane, so by the time he and Dietrich actually met, Cal must have been awake 14 hours. His appointment lasted at least an hour and he held up amazingly well. No tears, no tantrums, just the mellow sweet Cal we know and love. There was a great feeling in the air there at the office - everyone really focused on Cal and it really felt like he was communicating with them too. A great night.
Our participation in the seminar led us on some really rich tangents, and we left with some insights we really took to heart - especially about how the emotional health of our family can have a real impact on Callum's health. It's something we have always thought about, always knew in a way, but it was worth going all the way across the country to have it brought into intense focus. We also left with a lot of homework: a number of dietary, homeopathic, and naturopathic treatment approaches that we have since put into practice.

Since we got home, Cal has been having some great sessions with his Craniosacral therapist Leyan, his home-visiting Physical Therapist Bonnie, and his new home-visiting O.T. Chuck. Bonnie, Chuck, and Leyan have all been so great with him, and it's wonderful to see him as his social awareness grows with these folks outside of our little family. We also tried to take him swimming for the first time at a real pool, with our friends Kim and Bill and their son Nick down in Silver Spring, but Cal was having none of it - it's just not time to graduate from the warm bathtub yet.

We also tried to make a thank-you list of the people and bands who have been so generous to us and Callum in the past few months with their time, energy, and art - and we had to give up on it, because we know it will be impossible to do it - despite our best intentions, someone will be left out, and for that reason alone it makes no sense. We owe you a lot. It's largely because of those efforts that we can keep this schedule at Futures Unlimited (2 weeks at a time, every 3 months), see Dr. Klinghardt face-to-face ... and feel like we have some resources to work as aggressively as possible to give Callum a chance at the best life he can have. In other words, you have given us more hope than we had before. Can a "thank you" suffice?

with much love and gratitude
J, Janet, and Cal