UPDATE: october, 2021 (written by dave)

There are challenges that we face everyday that we hope you can understand.

Julia awakened about 3:15 and it seemed best for me to fetch a cup of tea for her and get some background music up so she could return to sleep. She didn’t touch her tea before she settled back down and went to sleep. But then awakened again with a coughing fit. Sitting on the edge of the bed and feeling restless, she seemed unable to think clearly and felt so confused by everything that she quipped, “I feel like my mom.”

The big issues right now are not diarrhea, nausea, sleeplessness, blood pressure, thyroid misfires, overweightness, or muscle hurts – although all those are certainly a daily, and sometimes harsh reality. The big, constant issues now are (1) that her need for oxygen has increased dramatically and (2) that she fights pulmonary hypertension (her chest will ache to the point where we’re concerned about a heart attack).

Julia is more often now struggling to catch her breath and very often is extremely tired.

She has a hard time walking or being on her feet any significant length of time without feeling like she must fight for breath. We’ve stopped using the small pulse oxygen concentrator that we were using to travel with, except for car trips that take more than 10-15 minutes. The portable concentrator just can’t keep up if she’s moving about with it. We’re now using oxygen tanks more often because they give a steady dose of oxygen, and the higher rates don’t depend on how many breaths she takes. We’re also using the wheelchair went out and about, rather than the walker. These challenges for us have meant more frequent and longer naps.

Her specialist has verified that she’s losing ground with her lung capacity and both her doctors have adjusted her meds to help with the hypertension and stomach issues (next check-in with pulmonologist is Dec. 10).

A recent visit from out-of-state relatives highlighted these challenges for us. We enjoyed their visit so much, but Julia missed deeply not being able to show them the sights and groaned over the fact we had to constantly cut short whatever we did with them in order to rest. And then, after they left, that day and the next were given over totally to rest.

Julia has been a teacher all her life. For that reason, she has once again picked up leading a 10 AM Thursday morning study on the book of Mark for seven of our friends. But we’ve trimmed back her need to prepare by resorting to using some video help from Brandon Robbins.

And so, we grieve the losses, but with acceptance and hope before the Giver of Life.

• We grieve having to cut off time with family and go home to take a nap. We still get in the car and take drives, but we miss being able to travel more than a couple hours out-and-back to seek out God’s natural wonders or find another interesting hole-in-the-wall to have a cup of coffee and a piece of pie.
• Julia has lost the daily ability to write her memoirs (which are brilliant by the way). Now she looks for 4-6 hours 1 or 2 days per week when she might feel fresh enough to do that mentally strenuous work.
• Julia is now also missing deeply the loss of kitchen activity. Food preparation has been one of her last avenues for significant contributions to our family life, and while we still like to do this together it is falling more and more to me.
• We grieve the loss of mobility and not being able to take long trips to visit friends and family.

It’s now 4:00 AM and she just had another coughing fit. This leaves her exhausted and when I go to see if there’s any way to help her, she says how sorry she is to be a burden to me. I try to reassure her, of course, that SHE isn’t and that the other stuff that is burdensome we bear together as God gives us strength. “I love you” always follows.

Nothing we do can remove the reality of greater limitations on our mobility and interaction with others. But we accept this as part of the path God has laid out for us.

It helps us to be able to turn to HIM and ask for quality time with our dear kids and our friends. In this, like everything else, we have asked Him for the grace to be living representatives to life lived by His gifts alone – by grace.

Additional helpful resource: How to admit you are no longer praying for healing