When Eli was little, his first sentence was spoken to me as I changed his diaper. As I leaned over the changing table to secure the tabs on his diaper, my hair fell forward and tickled his face. He removed his fingers from his mouth, which he had been sucking, to reach out to touch …
Adam again. The night Eli graduated, we began sending notifications and making phone calls. We started with the medical people, so they could come and complete the formalities and paperwork. Then to our close friends who had already been helping us plan for this event, or had been directly helping us cope in various ways. …
Adam posting this evening. Elijah Thomas Augustine passed on this evening at about 9:16 PM. He was having trouble breathing and said that he wanted to die. His mother said, "Well you have been fighting for so long. Three years." Eli said, "We are champions." He then asked his mother if it was OK if …
Celebrating Christmas We got to celebrate Christmas early this year. Our dear neighbors decorated their homes with Christmas lights and decor early, just in time for Eli to do a little driving tour. This was likely his last outing. Labor Having given birth to nine children, I am well acquainted with the work it takes …
I thought up the title for this post months ago, knowing the final destination, but not knowing how long it would take to get there. Eli is still with us, but I can tell it won't be for much longer. I have sought to learn what to expect here at the end of the road, …
This quote has been running through my mind since Eli had a bad pain episode a week ago starting about 3 am. He had texted me asking for water for his 3 am meds. I had been woken up by our 4 year old climbing into bed with Adam and me about 2:30 am, so …
Continue reading First things first, to the death. No. To the pain.
Radiation Eli finished his radiation Wednesday, October 13th. He had some increasing pain in his back, so he had previously been unable to lay down on the table long enough for the radiation. So, I gave him all the pain meds at my disposal (maybe 5 or 6?) and he was able to finish. Eli …
For the longest time, when asked how he was doing, Eli's response was "Same as always". In his mind, this response made perfect sense since he felt generally well and that was the same as he always felt. It bugged him to always be asked the same question by every medical person who rotated in …
A week after deciding to go to Disneyland, we were there. We drove out to my sister's house and spent a day trying to rest up. Some of us were more successful than others. The Big Day Bright and early, we showed up at the front gates after convincing Disneyland's security that the emesis bag …
Sir Eli the Boss Last Thursday, August 26th, our friend Erin texted me to see if we were going to the Utah Renaissance Faire, which was starting the next day. We've been attending for a number of years, but with Eli's declining health, I had decided not to go this year and I hadn't even …
Eli The Boss 