Tiny Bits and Pieces

Yesterday I got out of the house a bit to go to Anna's soccer practice. Although it was chilly, it felt good to be outside doing something. Another wonderfully supportive circle of friends for me and our family. It was a great few hours. Tara had a similar experience the night before with her mother and sister as they'd gone out for the evening. We're finding it necessary to recuperate this way now and then. So much more than normal, it becomes a deliberate expression of dedication to each other and Henry that we aid in our mutual ability to be on top of our game.

Each day we have to give Henry numerous medications. I mentioned previously his aggravation with us regarding the taking of medicines. While he takes them more cooperatively now (with less spitting and holding down) its still an unpleasant task for all involved. When he's tired it's a bit of a fight. Our bedtime now involves a 25 minute course of medication, that I hope becomes routine. It's not painful for him, but its clear that he's disturbed by the whole thing.

After giving last evening's course - during which he fell asleep - I walked into the hall and remembered how we used to brush his teeth then run full speed into his bedroom to cover himself with this covers and 'hide'. I'd do the "Where's Henry?" thing for a few minutes and he'd giggle like crazy and then 'scare' me. Books would be read, kisses and hugs given along with "I love you" and songs. I'd say - "Henry - I have one question for you...deal or no deal?" and I'd tickle his chin with no mercy until he'd squeal "Deal! Deal! Deal!". As I passed his room tonight on my way to the stairs, leaving him asleep in ours, I wondered if I'd see him do that again.

Some of the losses we've felt over the past weeks have been enormous - shaking practically every expectation of our lives - and some are coming in tiny bits and pieces. Things will undoubtedly be different. Right now, we're just so unsure how.