Friday, April 23, 2010
In our home we have what can best be described as a universalist blessing before dinner each night. Formal prayers are waived in favor of sharing with each other what we were thankful for that day. I believe it's crucial to acknowledge even the tiniest of triumphs, celebrate the most minute of blessings, and when we come together at the table and share them, it sheds a light of positivity on our lives and strengthens us as a family. As we often now find ourselves crawling through the darkness, it's more important than ever to share our little pieces of light. In my sharing of medical information and stages of grief, I have yet to do that here.
Jackson is doing so well now. He is steadily gaining weight, which is hugely important because body mass is directly related to improved lung function- not to mention gives him the reserves he needs to fight off any illness he may encounter. The more he rounds out, the more I discover his resemblance to Emily at the same age- as evidenced in the side by side photo of both at 6 weeks.
Speaking of which- SIX WEEKS! It seems a little triumph in and of itself. We have now been dealing with his diagnosis over half of his little life. I don't know why that's a comfort, but it is.
Emily is doing better. She still worries about her baby brother, but the therapist says her emotional state is very normal and healthy for her situation. She also said the things we are doing to help her cope (limit the information about his illness to an age appropriate level and amount, let her help with his care and treatments if she wants to) are the best things for her. Whew! She is sweet and tender with him, naturally maternal. Although I wish I could spare her the worry, I am so grateful for her sweetness and special care of her baby brother. Her readjustment to life in general after a new baby and the news of his illness is pretty astounding. Every day I am so incredibly thankful for her. Monday we should have the definitive results of her sweat test, which she told me it was okay to post pictures of so people could know what it looked like.
When you're crawling through the dark, feeling your way through, don't forget the little pieces of light. Put them all together in one place for enough light and warmth to survive. I don't mean to wax metaphorical...but apparently I did.
How could I forget? Jackson started smiling this week! I am finding that capturing his smile at it's very peak is hard to do, but rest assured it's not gas or a reflex(I may have to fight you if you say otherwise) It may seem a small reward for all we've been through already, but it's more than enough.