(Family still trumps politics.)
I recently spent several days with Grace and her family. It was SO GOOD to see her in person and in action.
There's a reason Christ said of children, "of such is the kingdom of heaven," and "whoever does not receive the kingdom of God like a child shall not enter it."
Grace has faith and trust as strong as any I have ever seen.
Her central line is covered by a dressing that needs to be changed periodically. I watched the process take place on our sun-drenched deck, complete with sterile gloves, masks, disinfectants, the whole nine yards. And what did Grace do? She lay flat on her back with her arms over her head, absolutely stock still, until the procedure was finished. This is the same procedure the hospital assumed would take five assistants to hold her down!
It's not as if she's a passive patient. She knows, for example, exactly how the daily procedure that flushes her lines must go, and doesn't trust the strange nurses who do it when she is in the hospital. When they do not follow the procedure, she does not hesitate to let them know.
But Grace trusts her parents, and relaxes patiently when she knows they're in charge.
What's more, she quietly accepts the necessary restrictions on her life, all the while living as normal a life as possible. (Well, mostly quietly. She IS a two-year-old.)
That small backpack contains the nutrition and whatever else goes into her stomach via her NG tube, plus the pump and associated controls. She's small, and it's heavy, so she'll more often be found dragging it along the ground instead of wearing it on her back, but it goes everywhere with her, except at night. She takes it as a matter of course, and is adept at manoeuvring all the associated lines as she goes about her normal play. (Not to mention that she is aware when the machine's beeping alerts her to a situation that needs attention, and sometimes even knows what must be done to fix the problem.)
Grace trusts her family (siblings as well as parents), and does the best she can to live a good life within the parameters that have been given to her. That's faith. (Her sister Faith is another one of my heroes.)
This faith and heroism is true of the rest of her family as well. When cancer comes to visit a family, it brings with it a host of opportunities for heroic behavior. Here's a great picture of the family at camp recently.
Those of you who enjoy puzzles might appreciate zooming in on the shirt that Jonathan (at the right, holding Grace) is wearing. Just to set the bar for you, our 14-year-old grandson, visiting from the other side of the Atlantic, figured it out in a matter of seconds. Don't let that deter you; most people take a lot longer than that, if they get it at all. (Though I will brag that I wasn't much behind him.)
In case you didn't catch it, a very important part of our vacation was getting the New Hampshire and Swiss cousins together for the first time in seven years. You won't see as many photos of that, as the latter folks are understandably more photo- and social media-shy, but it was such a great time, and they played together so joyfully as to do my heart a world of good!
For a complete Grace update, including a couple more adorable pictures and a cool story about Faith's soccer team, see the Heather's Day +170 post here.
Great photo. No puzzle - I developed a phobia about 1s and 0s my freshman year in college when some associate professor (grad student?) tried to tell us that was math! (I don't think any of us had even heard of computers in 1950!)
Poor, patient baby. I had no idea she had to carry all that around with her.
The puzzle can be solved without knowing about 1s and 0s. The two middle lines are the same; the lines taken together are a statement; and it helps to think about want kind of person might be wearing such a shirt.
But I’ll grant that knowing ASCII makes it easier.
Of course you would get it, Stephan, father of the one who got it in a few seconds. :) I love your non-technical reasoning. I'll bet you all did great in your recent escape room adventure....
