Friday, April 06, 2007

Ready, Set...Roll

Reality Check.

Regan rallied yesterday. She was awake & alert all day. We were able to decrease her oxygen support steadily to where she was almost breathing regular air. While we waited for the evidence that she's tolerating her feeding well, we began to catch up to where Regan has run since Monday's events. Not only has she been resurrected from her clinically brain dead status, but she is just a slightly weaker version of herself before we came in here 13 days ago. We don't think she's ready to ride off into the Hospice sunset just yet. She still has life to live.

Then last night she had a 3-hour critical respiratory episode where she required 3 nebulizer treatments and increased oxygen. But this morning she's stablized again and doing very well.

So here's our new reality: Regan is definitely beyond the help of the medical community. There's no need for us to bring her into the hospital anymore for respiratory issues or labs, etc. But she's also not as near death as we have been so ready to assume. She's like Nancy Pelosi in the Middle East right now...she's just getting acquainted with death...she's not engaging in diplomatic relations yet.

I've decided that we all feel too sorry for the life Regan has to live. We're anticipating her death too much. We're too ready for the relief that will come from knowing the whens & the hows of her last days. We're all looking forward to being through with the grieving process and getting on with life. But wait a minute...Regan doesn't feel sorry for herself. She seems to enjoy life quite a bit. She doesn't spend all day upset because of her pain. She's not psychologically spent because of her fatigue. And she's not sad because of her limitations. She just enjoys the blessings of life, breath, company and fellowship with the Spirit of God.

So we've decided not to put her under the Hospice label. Instead, we're going to do Home Health Palliative Care, which provides the support she needs without signing her death certificate yet. And we may have the chance to get started as early as tomorrow. We hope we can worship w/ our church family Sunday morning if she's up to it.

Please don't worry about this...we're not living in a fantasy land...we're not grasping at straws to keep her as long as we can...we're not projecting our parental desires onto her weak body...and we're not throwing our coins into the wishing pool. We're simply trying to listen to Regan & live in the moment w/ her the horizon in view. I think we all got a little ahead of her this week. She may be closer to her Day, but so are we all. We're not burying her yet if there's more God wants to say through her life.

"Pro re nata" is our new reality. God has been trying to get me to live this way for years, but I'm just too much of a control freak. I have tried to arrange my life & future the way I thought it should look based on some prescriptive notion of truth & faithfulness with a little subjective desire thrown in. Well, guess what......I finally get it. Pro re nata means "as the situation arises." Hospitals use the phrase "PRN" when they're trying to prescribe medications or treatments. It means take this medicine "as needed." It is the opposite of the "twice per day for the next 10 days regardless of your symptoms" approach. God, I give up prescribing my future to you. And I give up prescribing Regan's, too.

I've said all along that we'll run w/ Regan as long as she wants to run. But that is a poor metaphor. 1) Regan can't run, 2) it's a relentless, repetitive, jarring of major joints, and 3) you're in control. Regan rolls. It's a smoother motion, it makes you dependent on others. Regan may not roll much longer. But we don't have to decide that today. Again, as long as she wants to roll we're going to roll w/ her. We're ready to go home. We're set to support her care there. We're just waiting to roll. Pro re nata.

4 comments:

beegracious said...

i'm amazed at how the Spirit is using Regan's life and your words to trigger my own unfinished business. thank you.
...joining with you in living "pro re nata"

Shelley said...

There have been many lessons for all of us in the journey you all have been sharing with us the past thirteen days. This one rings very personally with me. Thank you for continuing to share your thoughts and feelings as well as the updates. We look to see what we can be doing or praying to hopefully help or bless you in some way and we are being blessed in the process though your words of reflection.
Continuing to lift you all up in prayer as you "roll".

fairydust100 said...

I cannot tell you how impressed I am with the level of courage and spirituality your family maintains. I can only wish that I can also learn from Regan and the entire Mills family to live in the moment and to not grapple with compartmentalizing life in the future.

Julie said...

Your perspective is a blessing.