"A Song for Papa"

Last Monday, at his request, Mom brought Dad home. It was a very tough night.

Mallory and I arrived early Tuesday morning. There was Dad, in his den, resting in his LazyBoy recliner, looking more peaceful and at ease than he has in a very long while. The night before, he had eaten clam chowder and vanilla ice cream. He was glad to see us, semi-alert and responsive, but far from the Dad/ Papa/ Dick we all know and cherish. 

Finally, a respite from the hospital. Finally, dialing down the logistical medical mayhem.  Finally, shifting from battle zone to comfort zone. Finally.

While it was very hard to see him like that, there was something undeniably sacred in our midst. I sensed a lifting  - a lifting of the veil. I felt the presence of my grandmother - Dad's mom - kind, gentle and so right there - right here -  with us.

By Wednesday, he was mostly unresponsive. The chaplain from hospice came to pray. Several wise, wonderful people told us that hearing is the final sense that remains – he could hear us. 

My girls, Mallory and Amanda, had been telling me that they were going to write a "song for Papa" and I let Mallory know if they wanted him to hear it, the time was now.  

Mallory began going through photo albums and scrawling words on a page. She contacted Amanda in Arizona, and they schemed: Mallory would write and send lyrics; Amanda would get her guitar during her lunch break and create + play the melody. What a gift to see my girls join forces, across the miles, united in creativity, motivated by a love for their Papa. 

Within hours, they finished and recorded their song for Papa. 

We played it for him. His eyebrows lifted slightly - there was a divine hush, a gentle calm that filled the room as he quietly and gently continued to let go. 

Here is their song, "Work Hard, Love Harder" - truly a beautiful testimony to the legacy Papa leaves for his grandchildren.... 

Richard Reid O'Neal

11/24/41 - 7/23/15

Homeward Bound

“Were it possible for us to see further than our knowledge reaches, and yet a little way beyond the outworks of our divinings, perhaps we would endure our sadnesses with greater confidence than our joys. For they are the moments when something new has entered into us, something unknown; our feelings grow mute in shy perplexity, everything in us withdraws, a stillness comes, and the new, which no one knows, stands in the midst of it and is silent.”      ― Rainer Maria Rilke, Letters to a Young Poet

Dad has been completely miserable ever since he was moved off the Rehab Unit and into the hospital room last Thursday. Just no comfort for the weary. Both he and Mom have been distraught and dismayed by ongoing onslaught of bad news, medically, physically and emotionally. All is not well.

After 40 days + nights in hospital rooms, Dad and Mom have determined that it is time to simply come home. We are bringing in hospice.

Dad to come home again. Robin hit the road again.

Today will be a travel day through mountains once again for me. (What I wouldn't give for some wings! ) Mallory will sit shotgun and play the very important role of DJ and chatterbox (all who know her know what I'm talkin' bout :-))...

Prayers for peace and safe travels all 'round....

Fine Lines

Mom & Dad with baby Eli two years ago.

I am a happy, shiny, sugar-coati-fied, sparkly, optimistic gal.

It's how I roll, it's where I live, what I give, my own personal double-edge. Take. Leave. Allow it to inform all info I provide. 'Tis darn hard for me to deliver all the other nitty-gritty.

Still...and all... observing, experiencing and re-counting the ugly, hard, real life moments is valuable -and, like it or not, I can do that, too.

As I mentioned, on Wednesday, I attended a "family meeting" regarding Dad's health situation at Springs Rehab TCU unit. We filled the table with all the professionals involved... Nurse, Dietician, Charge Nurse, PT, OT, more (it's all becoming a blur, much as I strive to focus)....  The info was point by point, lingo related to each specialty. All gave glimpse into their view of him; all seemed to agree that next step was to send Dad HOME this Tuesday.

Mom had a list of questions.
In my opinion, she posed them well.
All responded with (what I perceived to be) honest (albeit "pat") answers.
I want to believe their assessment. I also want to ask them, "Are you crazy?"

And... I also know Dad wants me on the road home to my kids and grandkids.
(It's a fine, fine line).

Wednesday-Thursday, I drive. drive. drive. DRIVE.
Thursday, I arrive home home HOME.

Meanwhile, in South Carolina.... Dad's blood sugar continues to vascilate too high, too low - requiring constant attention. He is on a renal diet to control potassium and sodium (not at all happy about that). His white blood count falls dangerously low; red count is in dangerous zone, as well.

The hospitalist came to talk to Dad and Mom on Thursday, told them he has "End Stage Disease" - basically, from what I gather, all his systems are failing and incurable - what we can do is treat the symptoms and keep him as comfortable as possible. Not at all sure what the "powers that be" are currently recommending as far as going home; though I do know that home is most definitely where he wants to be.

Yesterday, however, they moved him off of the rehab floor of the hospital and admitted him to the regular hospital hospital where they have more equipment and attention to monitor his vitals and give him stronger meds.

Last night when I called him, he reported that he had fallen and it took several people to help him up.

So, things aren't looking so sparkly and we welcome all thoughts of peace, comfort and positive connections.

I am going to help my daughter pick out her wedding dress today -- and that IS pretty joyous and worthy of celebration. Once again, it's a fine line.

Blessings breath by breath...

Faraway and a Day

So.... Dad has now been at Springs Memorial on the 7th floor for one full week.

We are scheduled to have a "Family Meeting" early this afternoon to review Dad's current condition with the medical professionals who are caring for him at Springs Hospital Transitional Care Unit.

Following that, my car is all packed up, ready to head northward through the mountains this afternoon and to land back in Ohio tomorrow, where this GammyBird is eager to see her little Eli, who is now (believe it or not!) 2 years old!

I will update with specifics on Dad later this evening. This week, thus far, has largely been about too much potassium in his blood.

Please send good thoughts and prayers for Dad's health and recovery.
More positive vibes for Mom's endurance, fortitude and  capacity to remain calm and gentle - (mostly with herself).
If you are so inclined, maybe sprinkle in a few good intentions for my journey from being here with them to once again, feeling ohso faraway.

Eager to be home again, finding it hard to leave.

Day by Faraway Day, Mile by Fartheraway Mile....

Blessings and Love, Blessings and Love... and so much gratitude <3

The River is the River

The River of Life flows without emotion.
The River surges. The River quiets.
The River overflows its banks. The River dries to a trickle.
The River swirls and storms. The River becomes calm.
The River runs clear. The River runs dark with silt.
The River is indifferent to what benefit
or what harm is caused by its water.
The River is the River, and that is all there is to it.

- Jonathan Lockwood Huie

From roller coaster to river. Ahhhh.... analogies.

Today was quiet(er), calm(er), seemed to run clear(er). 

No major mishaps to remedy or lament. Primarily improved vital signs and a day that followed hospital routine. 

Blood sugar midday was high, (but we all know - shhh, don't tell - my Daddy can be pretty darn sweet :-)).

First real day of Occupational and Physical Therapy. Seems both went well. 

We got to chat with the hematologist about current blood counts and treatment protocol. He was knowledgeable and cognizant of many factors as he relayed that current counts are within good ranges. He also offered satisfying answers to some of Mom's very specific questions. We all got a chance to BREATHE.

This evening, Dad instructed Mom and I on how to grill burgers on the grill. He gives excellent detailed instructions.... starting with " Take the cover off the grill" ;-) 

Thanks, Dad. 

"The River is the River, and that is all there is to it." 

Can I get an Amen?

Roller Coaster What(so)ever

Up, down 

 Up again

 Down - fast and furious. 

Hanging on, letting go, screaming, celebrating, cranking up 

(Who knows how high?)

Barreling down 

(Who knows how low?)

No idea what is over the next hump, next turn, next loopity loop...

Hanging on.

~ROK, 7/10/15

They discharged Dad from Piedmont Hospital (place we bemoaned each and every day of his 12 day stay) this past Wednesday, July 8. Part of me wondered about the timing and medical appropriateness of this decision, but (a) we wanted him out of there from the day he went in and (b) please, please let us focus on healing and moving on .... (so, I convinced myself to trust these professionals whose job this is and kept any misgivings to myself).

Admitted him to Spring Memorial Transitional Care Unit (TCU) Wednesday afternoon. Wednesday night kicked his ass. They had taken him off all antibiotics. Took him off lasix. Didn't give him respiratory treatment prior to release and then failed to order the current respiratory meds on his discharge papers, so had no respiratory treatments that day or night, so oxygen got seriously off-track. 

His blood sugar loves that damn roller coaster and was all over the place, due to the many transitions.

So...  sugar dropped dangerously low round about witching hour and, according to protocol, they had to insert an IV to administer glucose. Dad, however, no longer has veins eager to accept new lines, so they tortured him for a very long miserable time in the middle of the night, finally inserting IV on (lucky?) 3rd try and (thankfully, eventually) bringing blood sugar back to acceptable levels. 

Oh, he was ticked. And hurting. Both of his hands so discolored and purple, looks like he's wearing gloves for Halloween. Hate that. 

Yesterday till 2pm, he slept. When he was semi-coherent, he complained about being "stuck and poked"- Meanwhile, it became clear that he has most probably contracted PNEUMONIA yet again. He was running a fever. They called for chest x-ray. New Dr. reviewed most recent sputem culture, put him back on antibiotics. He was supposed to get IV antibiotics at 3am, but IV blew, so they finally opted to put in a new PIC-line.... that was successfully completed round about 1pm today. 

Meanwhile, all his blood counts went the wrong directions, so Dr. ordered a double transfusion. And Dr. Wise (yay!) gave him Unna Boots (for weepy, woundy, edema legs/feet), while his awesome nurse, Anna, gave him her full attention all afternoon. 

There is so much going on, I doubt anyone has even read through this full post. At this point, I'm writing it as documentation for me/us, because all of this runs together in a foggy blur and who knows when, how or why we may wish to access, but here 'tis, in my emotional rose glasses access...

And --- if you have read this far (:-)) and have ANYTHING whatsoever (that's a good word) to add, please, please, please.... do. 

Be Like a Duck, Dick!

American Black Duck carving.... calmly waiting completion.

"Be like a duck. Calm on the surface, but always paddling like the dickens underneath." 

~Michael Cain

When we called to check on Dad this morning, he answered his phone, "There goes that damn duck again!" 

(Yes, his ring tone sounds like Quack Quack!)

Laughing, Mom asked, "Is this Dick or a duck?" 

In his best Donald Duck voice, Dad replied, "Well, I don't know." 

Duck jokes are good. :-)

The day is promising. 

After 9 days at Pineville Hospital followed by 8 days at HealthSouth Rehab, unexpectedly leading to the past 13 days in Piedmont Medical Center, nearly everything is in order for Dad to be released to yet another Rehab facility today! His blood counts, oxygen levels and overall capacity for continued improvement have been deemed by his team of doctors stable enough to get the heck outta that hospital! God willing, we will get to drive him to the Regional Rehabilitation unit on the 7th floor of  Springs Memorial Hospital this afternoon. 

Mom and I toured the Transitional Care Unit at Springs last week and came away with a positive feeling about the space, the care as well as the location. It is a straightforward commute for Mom from their home in Sun City. We certainly hope and pray that there are no further medical complications, but it is reassuring to know that if there are, the hospital ER is a simple, direct trip down the elevator. 

Please say prayers for a safe, smooth transition. I caught a cold and had to stay away all day yesterday as, obviously, the last thing Dad's immune system needs to deal with is a bug. 

Thankfully, today I'm less messy, so Dad and I can both sport those trendy blue masks as I drive and he sits in the back seat - an amusing visual and not one any of us would have predicted, eh? Maybe we'll make a video of blue masked quacking in the car!! (Yes, I make myself laugh!)

At this point, we are not sure of the anticipated length of his stay, but Dad will receive ongoing healthcare + monitoring as well as appropriate levels of Physical and Occupational Therapy.  The goal will be to bring him home, where he can finish carving that stunning American Black Duck. 

Quack quack!

Matters of the Heart

I was present this morning when the doctor came to give updates on Dad's current medical status. Even though everything is ever-changing and trust level for professional opine is wobbly, at best -- still, it makes a difference to see the Doc face-to-face, hear his words in his words and have a chance to engage and ask questions.

Dad has had issues with lungs.
With kidneys.
With blood.
With calcium, sugar, salt.
With the system.
With drugs.

Up until very recently, we have been reassured about his heart.

The past few nights and days, his heart rate has inexplicably had its highs, going up into the 170s and 180s. Maybe it's nothing. Maybe it's something....

At least we know they are monitoring it.

Dr. said the team is all for discharge to Rehab at Springs Hospital in Lancaster in 2 days, as long as his white blood count remains stable and infectious disease doc can approve non-IV antibiotics henceforth. As of now, all seems on track. :-)

From my perspective, he is most definitely walking, talking and thinking better.
Better is better. We will take better.
Please keep praying for better strength, better breathing, better kidney function, better blood counts, better systems... BETTER better.

Tune into your heart and pray pray pray. Thank you.

Patience and patients

A litany of days full of "hurry up and wait"-ing.

Hospital patients and their loved ones are given an enormous, ongoing opportunity to practice the fine art of PATIENCE, for sure.

From micro-issues of the quality and serving of food, transport and supplies to the macro life-and-death issues of securing and administering medications as ordered, a sick patient in the hospital is very much at the mercy of the judgment, the skill and the attitude of the people who show up on any given shift to care for them.

This drives my parents crazy. They place high value on efficient systems and high-level communication. (Guess what? There ain't a whole lotta that happenin' in the medical system as a whole.)

 If only Dad were well, he'd whip this entire system into shape.... but, the fact is he is the PATIENT.

Today, Dad will have another chest x-ray to check his lungs and see if the medication is working to clear up the pneumonia.

Today, he will "ambulate" multiple times and complete exercises as prescribed by his adorable Physical Therapist (who is under orders to learn and bring him a new joke prior to next session).

Today, we meet with a woman who provides consultation services on appropriate placement once they finally give us the green light to move this Patient out of the hospital.

Please pray for patience and guidance as we hurry up wait and gently move into whatever comes next....

Surrender to the day

Pneumonia.
Again.
Yesterday started with fever and misery. Very low point.
A chest x-ray revealed new pneumonia.

Bone marrow biopsy results fill three pages.
Best we can glean from medical jargon and Dr's challenging-to-comprehend-English is...

 *Most likely, the culprit of Dad's current severely low white blood count is the combo of many of the strong meds he has been on over time to treat Churg-Strauss.
 *He has glaucoma infection in bone; part of the reason for hypercalcification of his blood.
 *Red blood cells also low (anemia), but not as much of concern or in need of treatment as other issues.

A new onslaught of drugs prescribed to treat all of the above.

He has been feeling awful and every. every. every. thing. is a chore.

Mom is beyond tired and extremely frustrated with the hospital scenario. Everyday when we leave, she says, "I just hate leaving him here."

Still, it's where he needs to be.

Yesterday afternoon, Dad said to his nurse, Paul, "You saved my life today."

As we left the 3rd floor, Paul shared with us that the difference between how he found Dad in the morning and how he was leaving him at the end of his shift was "night and day."

While that is reassuring on one hand, it also illustrates the ongoing complete uncertainty there is each and every night and day.

This morning, all vital signs are up. We surrender to today.

Time Flies

Two years ago tonight, July 2, 2013 - we were in a hospital room, singing with a ukelele, celebrating the glory and beauty of new life in our family. Happy happy Birthday, sweet Eli James! You are a miraculous gift to our family - a bright beacon of hope, joy and anticipation! I adore you, sweet grandson and my Dad's one and only great grandson. 

The past few weeks we have been in the hospital in much different circumstances, witnessing Dad's illness and his courageous struggle to rally. Today, while still remaining very weak and dependent, he definitely seems stronger on multi-levels. His blood cell counts slightly higher, calcium a bit lower; hope and clarity for what comes next slightly higher, aggravation a bit lower.

We have yet to get final results of bone marrow biopsy - hopefully tomorrow, but with the holiday weekend upon us - who the heck knows? Meanwhile, Dad is keeping a positive attitude and regaling all of the medical staff with jokes like, "Have you heard of the movie Constipation?" (No) "It hasn't come out yet." Bahaha! 

And -- two years later, here is little Eli's message to his Papa O'Neal via text message video in Arizona.... 

How quickly the years fly by! Just gotta love these crazy days, doing life, in hospital gowns! 

Bird by Bird

As we all know, Dad likes to carve birds.

And as his daughter, Robin, I love that he is drawn to bird art and that my children call me "MamaBird" because I am such a sucker for every bird that crosses my path. "Oooh - look at that bird!" I said to them all the time when we were out and about -- and they thought I was nutty to be so readily impressed by what appeared to them to be just another bird. It's fine that they teased me and gave me my nickname - it makes me happy every time I hear it :-)

I was standing before Dad's impressive display case, admiring these beauties last night, thinking "Oooooh - look at those birds!" and wanted to share the results of all his creative efforts. Aren't they wonderful?

As we continue along the medical journey, I am reminded of a quote (and book title) I love of Ann Lamott's from "Bird by Bird" (which, incidentally, is the inspiration for blog title, "Breath by Breath").
Here's the full quote:
“Thirty years ago my older brother, who was ten years old at the time, was trying to get a report on birds written that he’d had three months to write, which was due the next day. We were out at our family cabin in Bolinas, and he was at the kitchen table, close to tears, surrounded by binder paper and pencils and unopened books on birds, immobilized by the hugeness of the task ahead. Then my father sat down beside him, put his arm around my brother’s shoulder, and said, ‘Bird by bird, buddy. Just take it bird by bird.’”

And this is how we are maneuvering these days - bird by bird, breath by breath, day by day, procedure by procedure, meal by meal, moment by moment...


Yesterday's bone marrow biopsy will not reveal results until tomorrow. They are looking at marrow to try to ascertain why Dad's blood cells remain low, even following three transfusions. For now, it's a wait and see. The procedure itself went smoothly. The 2 hour prep + wait time was pure hell. Dad's a trooper, though, and came out of the procedure room afterward, cracking jokes and giving the nurses a hard time.  


Last night, they ordered an IV to give meds to decrease calcification. Not sure about all the medical rationale because there is minimal communication with the family (very frustrating), however, the ultimate goal is to help his blood regulate itself. Unfortunately, they were unable to find any veins in Dad's poor beat up limbs in which they could successfully insert an IV, so today they will try once again to give him the meds using a Pic-line.

Bird by bird... breath by breath...prayer by prayer...

Please surround Dad in love, light and courage to fight when he needs to and surrender as appropriate. Blessings and gratitude.