Got L: Now for M, N, O, P

I'm pretty sure that M would stand for "Mmmm, I don't think so. Writing 4 posts in one day?" N is for Not Happening.  O is for Only Four People Read This Blog Anyway, I Think.

Or M could be for My Weekend was More than Full with a Women's Retreat. N could be for  the Nervous Energy I used in  Saturday's skit. O could be  Oh Good, Roommate, We Agree We Need Sleep More than a Campfire and S'mores.

Or, to stick with the theme of hubby's surgery for the A to Z Challenge,  I could do a very quick recap of the things I was originally going to make into full posts.

M would have been for Marriage. Suddenly after 29 years I was thinking that we were just getting started in this love journey. The years had gone by too fast. I wanted to grow old with him, not just to middle age. I wanted the joy of being grandparents with him. I wanted to celebrate his retirement and then we'd do some traveling. I wanted to capture all the details of his face, remember the color of his eyes, feel the strength in his hands, keep hearing his voice in more conversations. I didn't want the marriage to end on the operating table.

N was for the Nurses. Hat's off to them!! Two things I must include would be:
1.  Ashley was our favorite.  We had her for three days. On day 1, she was chipper and
sweet, professional but down-to-earth. Day 2, chipper and sweet. Professional and down-
to earth.  My husband asked her on Day 2, "Are you always like this? I thought maybe
on the first day it was because I was the new kid on the block, but you're always so cheerful."
She giggled and said it was her personality, and she loved her job. Day 3 we were convinced. God bless her!
             
2.  Male nurses are a far different breed from female nurses. One small example: the way
they make a bed and give the patient an extra blanket. The females would take the fresh sheets and get the "hospital corners" just so. Fluff the pillow. Help hubby into bed from start to finish. Gently lay a blanket over him and tuck it in at the feet. The one male nurse , on the other hand?  Polar opposite. Yanked the clean sheets, shoved the corners under, did a quick swipe for more-or-less straight results, offered  Paul help into bed,  but presumed he was okay on his own (he needed more help as the chest does a lot of work when you're trying to lie down). Then he didn't offer a blanket; I had to ask.The male nurse then said, "Oh, sure" then snapped one open and practically tossed it willy-nilly onto the bed. Like he was a frat brother or something.  It wasn't bad, just different.  Made me smile at the difference in the sexes when it comes to nurturing.

O would have been for Operation, had I posted in full. But I'll talk about the results later.

The serious talks we had from November (when we consulted with the surgeon) till January 5th (the date of surgery) completely refocused us. What had been minor was now unimportant. What had been major was a little less important. And what we had dared not face before was now inevitable. We drew closer.  We discussed what we had avoided.


POA --Power of Attorney. The legal stuff we had been too afraid to face in our younger days was now not so hard. Our three grown kids were each responsible to be appointed POA if we needed. All three are good with finances, two are professionals in financial fields and understand the lingo.  It's wonderful when your choices are "good, better, and best" in a weighty matter.

We are so thankful that all of our kids and daughters-in-law get along well and there's deep trust that they will stick together and not fight over who gets what we're we dead and gone. None of them wanted our "stuff" when we asked about specifics. Maybe that'll change but they all, right now, are minimalists. They aren't attached to material things. To me, that is so gratifying. They have such confidence that God will provide for their every need. They are not big spenders but are savers. They are generous. They love to be together. They are hospitable. They value people. What  a blessing!! I can't overstate that enough.

We chose a POA from among them, and they agreed it was a good choice.   We chose a guardian from among them for our youngest son. He's 14 and we asked for his input. He was insightful and mature about it. Decisive, too.  So that choice was also easier than I imagined.

So writing our wills was relatively painless. POA, executor, guardian--all those terms that I had emotionally shunned when all our kids were minors--weren't scary anymore.

Talking about end-of-life  medical stuff was MUCH harder.  We gathered for a family pow-wow with our four kids one Sunday afternoon to discuss all the legal issues.  The most painful part was medical directive. What IF Dad died in surgery? Did he  want the DNR order (Do Not Resuscitate) ? Heroic measures? Resuscitation but nothing heroic--just food, water,  oxygen, morphine,  but no more interventions? That part was hard to talk about, but necessary, and certainly having Paul choose what HE wanted, and telling all of us at the same time so that there was no question about it later, gave me a peace. He opted for the middle ground --revive/food/water, but let him go if there was no quality of life.

Well, this post was just about 4 days long. But at least this is the last sentence. I didn't mean for it to be as long as a last will and testament!

Loeys-Dietz Syndrome

Letter K  of the A-Z blog challenge has been excused from my alphabetic posts for good reason: my daughter came home from Florida last night and I was busy all day prepping, worked in the evening, and stayed up  from her 10:30 PM arrival till after midnight consoling her. Blogging was not important.


But that brings us to the Letter L...


In case you're wondering, the genetic disorder is called Loeys-Dietz Syndrome. It was named for the two main physicians who researched for nearly 20 years before isolating the gene responsible.

My husband's side of the family (and all the offspring) have had the "privilege" of being seen directly by one of those researchers-- Dr. Harry Dietz , of Johns Hopkins University.  I say "privilege" because--well, being a test subject in studies of a connective disorder that has proven fatal in the family isn't exactly enviable.

My kids remember having echocardiograms, "wing span" tests, eye exams, poking and prodding in their palates, bending every which way while trying to remain modest with a hospital gown on, and
hearing they might have to put raw spaghetti up their noses. They had their skin pulled on, their feet measured, their ears bent (literally), their kneecaps rattled, and on and on. My daughter says it felt so invasive, that it was the beginning of her hating to visit any doctor.

That being said, to have the head of genetics at this world-renowned hospital looking at you--not just your file or your films--is indeed a huge blessing. He is a genuinely caring person who never made any of us feel rushed or stupid or annoying. When I asked, "What do we do if we ever get to an ER and need to relay information about this rare condition to them in a hurry?", Dr. Dietz handed me his card with his cell phone number on it.  "You have them call me any time, day or night, I'll take care of it."

It really doesn't get much better than that.

The family has actually been treated like VIPs in the genetics department at Hopkins.  Don't be jealous, but to say we're a big deal there isn't far from the truth. In fact,  they were calling the syndrome by our last name before Dr. Dietz and Dr Loeys (of Belgium) renamed it for themselves.

Essentially, because of Loeys-Dietz Syndrome,  my hubby had to have the cardiac surgery which I'm blogging about in this A-Z Challenge.

Just breathe

I found myself holding my breath quite literally between November and January. It was completely subconscious, but became almost a habit.  Deep in thought pondering the "what ifs", I had to remind myself to exhale. And inhale all the way.  Is this normal or common?

"Take every thought captive ," scripture says. I'd have to swap a thought like "I'm too young to be a widow" with "Jesus, you will never leave me or forsake me ."

Another thought would be how big this house would feel with just me and my son in it. Big and quiet and full of memories.  Lonely, scary, overwhelmingly big.

Breathe....he's not dead! Be thankful for how capable he is, and tell him. "Encourage one another while it is called Today," I'd remember. And I got much better at expressing my gratitude to Paul for how handy he is and quick to fix things around the house.

Another recurring thought made me panicked: I couldn't be a single mom! No way!  But God would swoop into my mind and say, "My grace is sufficient for you."  

After awhile, it seemed as if this exchange of negative thoughts with God's eternal promises was coming more easily. It occurred to me that my thinking on scripture should be like breathing.  Take it in deeply, let it out. Of course sin will always interfere this side of heaven, but I can make conscious decisions throughout the day to think on Him, the Breath of Heaven.

Indelible Words

The morning of surgery,Paul had a vicious headache and of course, had had nothing by mouth since midnight, which didn't help matters. But the headache, he admitted, kept his mind off what was coming.

When we first got to Hopkins and registered at o'dark thirty, we had some time to talk, just the two of us. His head hurt badly, so I stayed mostly quiet, but I did ask him, "When they take you back to meet with the doctor and anesthesiologist,  who do you want back there? Your brothers and me? Just me? Me and the boys?"

"Just you and the kids,"  he said without hesitating.  For a split second, I felt bad for his brothers who hadn't seen him since the day before. I thought it might be good for them to see him  again before he "went under the knife" since they probably wouldn't see him alert the rest of the day.

But he was forthright. Decisive. I respected that because I know the need for privacy and protection of my priorities when I'm the patient. You need an advocate, a representative, a trusted caregiver. "Immediate family" after you have children puts them before your family of origin.

Out in the waiting room, we were beyond blessed to have all of Paul's brothers, a sister-in-law,  later two nephews show up to support us.  I was at complete peace.

Our youngest son  Joel (then a month shy of  turning 14) had chosen to go to school that day. He wanted to "not have to think about it as much," he said. Wise call.  Our daughter was in Florida.  She was in constant communication by text. We felt her presence and prayers.

My older sons and a daughter-in-law went back with me. We kept our voices low because of Paul's headache. The boys each prayed over their dad, which --I gotta say--choked me up. Such godly young men of strong character. Truly a reward after years and years of parenting in the trenches.

At one point the kids were talking among themselves, and Paul took the time to motion me close. He looked straight at me, holding my hand.

"Two things I want you and Joel to remember if ...things don't go...the way you hope:

(He held up a finger.)

  God is good .

 (Then he held up a second.)

 And don't be bitter."