Saturday, November 5, 2011


I haven't been forgetting to post, I swear. And yes, I expect you to believe me again when I tell you how crazy life has been.

Since I last sat here to write to you, life has swirled around us like the tornado around Dorothy in the Wizard of Oz. Some new things have come into our life on the swirling winds, and others have slipped away.

We have survived the first month of respiratory season, weathering a couple of ear infections, a respiratory infection, and a respiratory virus. Lots of antibiotics and extra treatments, but Jacks played Iron Man through it all and defied IVs and Hospitalization. He's steadily growing, and even- dare I say?- looking a bit chunky these days. Other than the hours of the day we spend doing treatments, and the little valve poking through his shirt, nobody would ever know he was anything but a wild, happy, silly toddler. He has made it a year since his last respiratory hospital stay (I'm not counting the short stay for his G Tube!)

My last several posts seem to have been dealing with my finally coming to terms with Jackson having Cystic Fibrosis. (As much as one ever can.) Since his diagnosis there have been many ups and downs, and now, for the moment at least, life seems to have normalized. SO much of what I have shared here has been sorting through my own grief and hope. Now that the intensity of that grieving seems to have settled some, I sometimes wonder what to write about. It's a blessing that every moment and every though isn't wrought with the disease, but I don't want to leave this space. I'm thinking of mixing in more 'article' type posts, sharing how we cope with and strategize some of the different aspects of integrating our CF life. That way I Have something to offer during the time when CF isn't dominating our day to day (which is a good thing!) Is there anything you're curious about, or would like to see covered? I don't mind sharing things, so if there's something you wonder about, ask me, I'll gladly write about it.

In the coming week we will be celebrating the marriage of my best friend, and closing on our new house. Then a couple of days work on the house and then taking up residence there. It's going to be busy. I know, you're shocked. Hopefully I will catch up here before the dust settles.


  1. If anyone can grow another set of arms and add more tasks to juggle...and do it can, Amy! I'm so happy to see that things have settled down and normalized a much of that has to do with the care you and Michael provide Jackson. You continue to amaze us. I'm looking forward to reading about the new chapter in your lives, a new home, etc. Exciting stuff!