Sunday, November 23, 2014

Graces Human and Divine.....

 Divine Graces. Forgiveness, love, faith, compassion among them. 

Human graces, the same.  The gentle kindness of our human co-travelers in this life are what point us toward the Divine. 

Babygirl was discharged from the hospital last night, just before nine PM.  They didn't exactly hustle us out - we were offered the option of sleeping over - but Babygirl's headache had drifted down to a 1/10 and she had a suspicion that her second IV site might not hold up for another round of medications, so despite the fact that we both had reservations, we decided to leave.  Unlike our last discharge (which for reasons unknown took over four hours), we were out the door in twenty minutes.  We hiked to the parking garage, and.... the car was dead. 

I checked immediately - the headlights were not on.  But one of the interior lights was - I must have switched it on to look for something when we arrived and forgotten about it. 

We don't have AAA (we keep talking about it and then forgetting to do it).  So I Babygirl and I dropped our stuff in the trunk and hiked back into the nearest building to ask security for help.  "We're dealing with a  bit of a situation, ma'am, but we'll get to you as soon as we can."  It wasn't long of a wait, and a kind guard came and drove us to our car. 

I'm notoriously nosy.  "So...what was the 'situation'?"  "Oh, a chopper came in with a trauma case and a cop.  Emotions run high, you know?"  I mentally translate.  If there's a cop, a parent is likely responsible for the trauma, and the other parent (and/or the grandparents) aren't handling this well.  "You see a lot, I imagine."  "I love my job, but I just made my 90 days yesterday and I've cried twice already." 

He doesn't look like the crying kind. 

The security car has a cool jumper cable hook-up that allows him to wire up to our battery and then just plug the other end into the front of his vehicle without even lifting the hood.  It set off my car alarms when it plugged it in, which made him jump a mile and unplug the cable.  "Was that you?!?"  "It's an automatic anti-theft alarm.  I'll switch if off when it comes on."  It took two more tries (with him jumping like he was being electrocuted each time) before he understood that he had to let it honk for a minute to give me time to turn it OFF.

Maybe he is the crying kind.

The car started without incident (except now I need to find the radio code to convince the radio that no one stole it).  He stayed for bit to make sure we were okay, and left us with a "Have a blessed night!"

Halfway home, Babygirl suddenly said, "My head doesn't hurt AT ALL." 

The fact that we had just made it calmly through what could have been a stressful car breakdown was undoubtedly helpful.  Ask anyone who knows me:  I'm not always good with the unexpected crisis.  The fact that security at the desk didn't do an eyeroll and was nothing but compassionate about it was amazing.  The gentle soul of the man who restarted our car calmed my heart. 

I will say it again:  God has no hands but ours.  I do not always handle the hearts of my fellow-travelers as gently and with as much grace as I might.  I am grateful for gentle reminders that I should.

DeeDee

PS She is still headache-free this morning, and morning is usually the worst.  We have recheck appointments with neurology and nephrology tomorrow morning.

Saturday, November 22, 2014

To Our Race So Freely Given....

Today's been a long day.  Six IV treatments with the DHE and the headache is hanging tough, so they are starting a new medication now. Even as I see the setting sun reflected ever earlier off of the newest of the Children's Hospital buildings across the street, it seems a long, draggy day.

But I have a long list of things I am grateful for today.  I am not these parents:

Overheard in the elevator:  "....and then he coughed, which increases the pressure in your chest, you know?  And a stitch in his heart tore loose and he started bleeding out through his chest tube, and I asked the therapist 'should his nose be bleeding like that?' and she said..."

Or this:  "He's eighteen, just turned this week.  He was born here.  Yeah, we're 'Frequent Flyers'.  I don't know what we're going to do now that he's too old to come here...."

Or:  "We're on day sixteen since they took his appendix out.  The abscesses are still draining...."

Yeah.  We aren't those people, and we aren't any of the many people who arrived by helicopter in the last 24 hours either. 

Sometimes I need to be reminded that my kid is not the only one laboring under the inheritance of Adam. I see the number of moms and dads with the blue 'I-have-a-kid-inpatient' wristbands sucking down coffee like it's a lifeline in the cafeteria at 5:30 AM.  I see sibling groups with matching shirts that say "Team Gabby" filing into the elevator to go visit Gabby with a very tired Grandma in tow.  I can look down into the ER waiting room, never, ever empty. 

Our race was given Paradise.  We traded it for the knowledge of good and evil and gained sickness and death.

And despite that...despite ALL of that, what I see here all around me are people who manage to put off their fatigue and put on a smile and keep walking.  I see moms who stagger out of  kid's room looking like a puff of wind would knock them down forever turn around ten minutes later and go back in singing.  I see peace in the face of struggle.  I see hope.  And I see gratitude.

DeeDee

Friday, November 21, 2014

For Each Perfect Gift of Thine.....

Sigh.

The discipline of using this hymn to outline my gratitude for the month of November has reached challenging heights.  Sitting up in the night with a child in a children's hospital 200 miles from home is always an exercise in maintaining a stiff upper lip.  One of the nurses just asked me if I'm okay - what am I supposed to say to that?

The truth of the matter is, though, that I am better here that at home.  Here, at least, the responsibility of dealing with Babygirl's pain is no longer mine.  Despite the fact that she had pretty bad chest pain from her medications during the night necessitating repetitive cardiac evaluations; despite a one AM I-wanna-go-home crying jag that left us both exhausted, we BOTH slept better last night than we did the night before. 

So where do the perfect gifts lie?

Well.  There is Babygirl herself, who despite her exhaustion and pain remains polite and focused with the staff, which is more than I can sometimes say for myself.  There are family and friends who step up and offer whatever help they can, surrounding us with prayer and love.  There is my job, where people step up without complaint and pick up the slack yet again, dealing with disgruntled folks who are tired of being shuffled around like a deck of cards to accommodate the weirdness that is my life. 

Just because I am weary and sad doesn't mean I'm not grateful.  Making gratitude a discipline helps pull me out of myself and back into the larger world.

DeeDee

Thursday, November 20, 2014

For All Gentle Thoughts and Mild....

I've been short on gentle, mild thoughts lately.  Work has been crazy with the retirement of a colleague. Mom's decline is never pleasant to watch.  Hubby's back pain is no picnic.  But it is Babygirl's headaches that really take it out of us.

Her recent hospital stay resulted in a 100% resolution of her headaches for about five days.  Then a day on, a day off, a day on, a day off.  New medicine working well, then working slowly, then working not at all, until finally she settled back into the chronic daily headache, awakening with a 7/10 pain that would gradually decline to a 3 - 5/10 by the end of the day, but never completely go away, except for one lovely evening for a couple of hours. 

I started calling neurology on the morning of day three of this headache, last Friday.  The nurse called back at lunchtime, said she'd talk to the doc and call back by the end of the day.

Monday morning I called again, and requested again that they please return a call, because day three was now day six.  A coordinator of some sort returned the call and was miffed that I was angry (really? Well, I did say, "I feel like no one gives a rat's ass about my kid."  Cussing at the person who is not at fault is bad form, and I apologized immediately and had to listen to the "you aren't the only one with a kid with headaches" lecture, the immediate Karmic payback for my rudeness), but she promised that she would immediately go to the nurse and that someone would call me by the end of the day.

Tuesday evening I came home from work and sobbed like a child all over Hubby.  He's gotten quite good at just hanging on and making comforting noises.

Wednesday morning I called again (I have an alarm set for 8:30 AM on my phone so I remember to call early in the day.  It is pathetic but that way no one on the other end can say I called too late in the day for them to get back to me.  Not that the time of the call apparently matters in any way). We are now on day eight of a nearly continuous headache and I've waited over 5 days for a call back from a doctor.  Keeping in mind that the poor soul on the other end of the line is not responsible for this, I outline the problem AGAIN.  And I know she can hear that I am crying.  I'm not going to pretend that I'm not.  At 4:40 PM I am with one of my nurses, notice the time, and start crying again because I know neurology goes home at 4:30, so there is no hope of a call,  but I still have paperwork and patients of my own who need to hear from me, so I pull myself together and keep working.

At 5:30, my phone rings. It's the doctor.  I was stunned, sincerely stunned.  I explained, AGAIN, where we are in the process.  It is truly a good thing that there is 200 miles and a phone between us, because his basic excuse is that he needs clearance from the kidney docs before he can try anything new.  I ask what he want to try and he rattles off a list that contains one medication that they have already okay'd, one that she already on, and one that they have already declined.  I point this out to him and he refuses to give her the one they say is okay because HE doesn't like the side effects. 

"Doc, let me tell you something important that you need to know:  My brother took one of those silly online how-long-am-I-going-to-live quizzes and it gave him 46 years.  He said, 'Why would I want 46 more years?  Give 'em to Babygirl!'  Babygirl said, 'Why would I want them? My life sucks!' "

There was a pause.  "Do you want me to readmit her to try to stop the headache again?"  "Yes.  Tell me when you want us there."

I skipped Bible study and choir rehearsal to finish every phone call and piece of paperwork that could be finished.  And this morning we are here at my sister-in-law's house, waiting for a call from Bed-and-Board to tell us when a room is available. 

Stopping the headache is only one step.  They HAVE to find something to keep it from coming back.  So I'd be very thankful if all of you would send your thoughts and prayers our way.

DeeDee

Wednesday, November 19, 2014

And Friends Above.....

I miss my Grandma.  On Wednesdays she would walk to our house, and in the summer I would watch for her to come down the hill about the time the noon whistle blew.  My mom would wash her hair and set it in pin curls and they'd drink tea and chat while it dried.  They'd make me my own pot of tea - probably 80% milk with half a cup of sugar but it kept me out of the way for a while. 

Grandma never spent her change, she just collected it in a little coin purse. When I got older  I had the job of counting it up an dividing it evenly between my brothers and I to use as pocket money for the week.  Since we didn't get an allowance like many of our friends did, this was a real treasure.

Every Valentine's Day Grandma gave us a little heart-shaped box of candy, and for Christmas one of the Lifesaver Books.  Each.  Our friends were envious. 

Grandma helped finance two cross-country family vacations, and camped from Buffalo to Yellowstone and back, and from Buffalo to Yosemite and back.  She survived being lost in the Mojave Desert, exploring the Badlands, being surrounded by bears, drinking campfire coffee, and landing flat on her back (along with my Mom and Dad) when I got up from the kids' side of the picnic table and their combined weight took it over.  Literally.

I asked her for a loan so I could do my first semester of college while I was still in high school.  Without without a second's hesitation, she pulled out her purse and handed me $250, the entire price.  She believed in me, always.  When I told her I was planning on get married at 19, she said, "But I thought you were going to DO something!"

She died a year later, when I was in my second year of college, technically my freshman year, at the end of The Blizzard of '77.  I came home for her funeral to snowbanks taller than the telephone poles, and we couldn't bury her until spring. Her death made me look hard at my traditional upbringing and my traditional life view.  Her belief in me pushed me the rest of the way through college (two undergraduate  degrees in three years) and ultimately medical school.

 I believe she still makes flowers bloom here and there for me when I need them.  We should all be thankful for our friends above.

DeeDee

Tuesday, November 18, 2014

Friends on Earth........

It is isolating to be the parents of a chronically ill child. You can't predict more than a day ahead, so rather than cancel at the last minute again, you don't accept invitations.  Invitations slowly stop.  People innocently ask how things are and you have such limited choices:  Flat-out lie, dodge the question, or let on that things aren't going well.

Each choice has its advantages.  Lying gets you off the hook, because if everything is going great, everybody smiles and moves on to the next topic of conversation, sparing you a blow-by-blow reliving of how much your life sucks.  Dodging isn't bad, a good choice with people who really don't care about the answer anyway, but sometimes painful to those who feel they deserve a more honest answer. Telling the truth gets you support.  But telling the truth is exhausting.  Exhausting.  When I was in Migraine Hell myself a few years ago I heard every "Have-you-tried-sacrificing-a-chicken-under-the-full-moon" suggestion from every corner of the universe.  I may have gone to medical school but I'm not so full of myself that I'm unaware that doctors can be ignorant prigs who ignore perfectly good natural remedies.  I tried a lot of them.  I checked known safety data on a lot more.  I've been down this road myself. 

Walking through an illness for yourself is not the same as watching your child suffer.  And she frankly has it a hundred times worse than I did.  Yes, we've thought about hormones. Of course we've examined diet:  Dairy, gluten, chocolate, caffeine, sulfites, cheeses, and every other imaginable food trigger has been investigated.  She has no allergies.  Yes, of COURSE we've had her eyes checked and no, she doesn't have TMJ.  The list of medications we've tried (herbals and supplements included) would astound you.  I will tell you that in the last eighteen months not once has any human outside of her neurologists' office opened their mouth to offer a single suggestion that we haven't already considered.  The only treatment I found on my own was an electronic trigeminal nerve stimulator recently approved for use in adults.  I asked her docs about it.  It hasn't been studied in kids.  I'm willing to sign her up.

All theses suggestions are kindly meant, as are the many stories about people (and it seems everyone knows at least one) whose headaches NEVER come under control (not sure how that's meant to be comforting except perhaps in the 'you aren't the only one' sense).  And I'm ashamed of myself for being so frustrated by the sincere kindness of people who care about me and Babygirl.  But her pain has me so exhausted and so discouraged that  I just don't have the courage to think about it any more.

But here is where I know the value of my friends:  Wednesday, when we get information from Babygirl's new tutor about what hours she wants to teach her, and we need an adult in the house to supervise, I won't have to make more than two phone calls to find someone who will either give Curlygirl a ride over so she can do it, or come over themselves.  I'm 100% certain that that is a gap people will stand in, just as they have stood in every other oddly shaped gap we've had in the past three and a half years.  I can't explain how huge the peace is that comes with that knowledge.

DeeDee

PS Funny story:  For a while the tutors were satisfied that my Mom was on the other side of the house.  Then one of them must have met her.  We got a request for an adult who "isn't so hard of hearing."  I said, "She isn't hard of hearing exactly, she's more.... hard of thinking."  The tutor responded, "Yes, well, I was trying to be polite..."

Monday, November 17, 2014

Parent, Child.....

When my parents were children, they were in sad circumstances. 

My dads father died when he was a toddler.  His stepdad was an abusive alcoholic.  My mom's childhood was split between happy times when her father was not at home, and horrifying nights of abuse when he was.  They married young, he at 19 and she at 16, and began a family a year later.  My mom told me once of a conversation that they had before my older brother was born.

"We sat down and decided what we were NEVER going to do as parents."

Teenagers.  Making plans for permanent change. 

They made promises to us kids before we born that they kept all of our lives.  We never once sat outside a bar waiting for a parent to have "just one more drink."  I was never left alone for even a minute with our grandfather, and I was given permission before I understood why I needed it to stand up to him if he made me at all uncomfortable. They didn't turn themselves into perfect parents - the gap was too wide - but they gave it their best shot.  They had no idea on earth what 'normal' families did on holidays, so they watched "It's a Wonderful Life" and copied the style as best they could.  For the most part, they pretended to be 'normal'.  For the most part, it worked.

The knowledge that that conversation had taken place has had a profound impact on my parenting.  The concept that one could decide to change things ahead of time - how amazing is THAT?  How amazing IS that? To have a love so profound that you plan for a better life for someone who doesn't even exist yet?  It goes from the foundation to the frosting of parental love.

Grateful?  Hell, yes.

DeeDee