More Good Days than Bad
Once again, I'm remiss in updating the blog. Most of my updating takes place on Facebook - it's quick and easy to update.
Jack has had a run of mostly good days. He's been feeling and looking better than he has since we transitioned him to hospice. Which means ... we have his pain under control. He's getting a decent amount of morphine round the clock and it seems to be working. It's not to say there haven't been some rough days. After one particularly difficult day, Jack ended up sleeping for almost 24 hours straight. It scared me. If I had to describe what this "ride" is like, it is very much like those first months of Jack's life when he lived in the pediatric intensive care unit. The intensity and stress of the unknown on any given day is much the same. What's different is that I'm 15 years older and much more worn down. I don't have the stamina for this. I seriously worry about my own health these days.
I want to comment on my post before the birthday post. I realized after the fact how very raw my words were. At the time I wrote it, I just sat down and let the words flow. Interestingly, I heard from several moms who told me that they could relate to much of what I wrote because of what they are dealing with in their own lives with their children, but they hadn't yet been able to put their feeling into words. I spoke for them as much as for myself. And that is why I write, and why I keep it brutally honest most of the time. I speak from a place that very few can understand, but for those who do, there is a connection that reaches across the miles and forms an inexplicable bond between people who've never even met in person.
Despite Jack's run of good days, I'm still beyond tired because of the round-the-clock meds we have to give him. So, this update is going to be short and sweet.
The sweet part is that we had family pictures taken last weekend and, thankfully, Jack had a good day. I think the pictures turned out great. For those not on FB, here are a few of the pictures and at the end of this post is a link to the album of pictures (which will only be available online for a short time).
Stay tuned ... I have another very raw blog thought just waiting to be written.
xo
3 comments:
I'm sure you are beyond tired Ann. I appreciate so much that you are honest about your journey with Jack. I'm sure it's helped more people than you will ever know. I'm SO glad to hear Jack's pain has been under control and he's had mostly good days. I LOVE LOVE LOVE the family photos. I'm glad you posted it here since I don't get onto Facebook very often.
your family photos are amazing. through the photos you can see the strength your family has together. i'm glad to hear that with the help of medication, jack is having more good days than bad...but i can still understand how exhausting it must be to never know what the next day, hour or minute will bring.
thank you once again for sharing your journey.
At this stage, whether you post or not, those that need to know, know and care, and keep your family in their thoughts.
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