weekend update

late on Monday evening!! Oh well...

We went to our second Bowen clinic visit on Saturday, which would not be complete without some episode of sickness. Adam honoured that requirement and duly had a fever Saturday morning that we couldn't figure out. I have to say though that when he climbed up in my lap and snuggled there for 20 minutes I was grateful for the fever. It was wonderful!! He perked up after a while, and we had a nice session with the therapist. I gave her instructions on what needs to address--after the last session Adam's nose cleared up, so I'm ready to expect and see some results in his hearing, bowels, brain, etc! We're still waiting on that though...

Yesterday we went swimming, which is our usual Sunday outlet. However, we had a surprise when we were all having a snack after the session. I had forgotten a nappy for Adam and just put him in his jeans--then forgot that he didn't have a nappy on (do you see a trend too?) We were all sitting and chatting, watching Adam and Caleb having fun and jumping up on a table and then down when all of a sudden Adam says "pee pee, pee pee" and I realise he's had an accident. Now 'says' is italicised because for Adam to connect what he's just done with a word that he's learned and then say it is huge. And it's not too far a leap from that to connecting what he needs to do with a word and saying it. Big encouragement indeed.

Last night we watched "A Beautiful Mind" to unwind--which I found odd after we watched it as it's a real tear-jerker. Not to mention that Brian suggested it at 8:30pm which is usually after our bedtime! I sobbed my way through most of it, as it is such a beautiful story of a woman who has accepted her husband's disability by accepting and staying with him. Several times in the movie I found myself thinking that I would have left him, but she stays. This is even more stark if I reflect on the fact that we "can" leave a spouse, and even our own child, but how much more powerful it is if we stay with them, see them through the disability even at the complete and utter loss of our own expectations. That's really what is at stake, I think--our expectations. If I was expecting a "perfect" child when Adam was born then I would have been disappointed. And if I see living in a world with him as painful then I will be disappointed. But if, as in this movie--completely devoid of spiritual or religious meaning--I stay with the people I've been given through all the various pieces of their life, living the pain and loss with them, then out of that is borne the ultimate meaning of love. This, as John Nash says as he received the Nobel Prize, is the heart and soul of logic and reasoning.

I think I might cry again.

Saturday

Saturday was a beautiful day in Aberdeen--bright blue skies, light clouds and a whippy spring wind. Just after breakfast we headed out in the car for Inverurie, the next big town along the A96. As we got into the car we were having a discussion about Adam, who didn't seem to be on top form. He was walking along slowly, with his tongue sticking out. He doesn't usually have his tongue sticking out at 10am--it's something that happens when he gets tired, like 7pm at night. I began the rundown in my mind of all the possibilities, which did not include what was conclusively proven about 10 minutes into our drive: an upset stomach.

Just over the hill past Tyrebagger woods Adam let loose with what little he'd eaten at breakfast. We paused in a bus stop to clean him up, and debated carrying on with the plan of the day. It was 50-50, but we'd already packed the bags so we carried on. In retrospect it was the absolute right decision, but at the time I wasn't so sure!

The reason we were heading to Inverurie was for Adam to have his first appointment at the Children's Bowen Clinic. I will spare you my lame summary of what they do and let you read it for yourself if you are interested. Suffice it to say we're always game to try something new, and we just hoped that Adam's blip on the way would not repeat itself in the middle of the session!

The woman who worked with Adam was great, and he did great. He tolerated her touching him without complaint for the most part, now and again waving her hand away and looking at me as if to say "what IS she doing?" I mentioned that his right nostril is constantly clogged, and she set to work on that too.

I found myself really hopeful, as I usually find myself hopeful when people are working with Adam, but of what I'm not really sure. I know that people seek treatment for their children's disabilities for many reasons: cure, improved ability, better quality of life, etc. I know for a fact that Adam's Down Syndrome will never be cured, and whether or not his Autism can be is beyond my ability to answer. I also know that I couldn't care less whether or not he's ever "cured"--he is Adam, regardless of his "condition", and that's that.

What I do hope for is that through these treatments and daily work with Adam his communication might improve, and that he'll gradually become more independent, and maybe even potty trained. I hope that his nose might unclog, and that he'll be more able to tolerate physical touch and changes to his routine. But in all of this I want to be careful and mindful of the line between wanting to "fix" him and help him. I don't need to change Adam to be "better", I need to help him in every way possible to reach his potential. His potential, not mine.

Anyway, that is what I tell myself, and it is a good reminder with Caleb as well. I don't want to make my children who I think they should be, I want to watch as they grow into the people they were made to be.

No more blips after the morning--we had a lovely day in Inverurie, a great walk in Kirkhill forest on the way home, and two very tired boys at 7:30pm!