Monday, August 22, 2016

And in the blink of an eye, 20 years come and gone!

I have a quiet moment alone tonight to reflect on the life of my oldest son, Chris, who turns 20 on Tuesday, August 23. Twenty years since:

NICU, August 1996
  • I went into premature labor at nearly 24 weeks gestation.
  • I drove myself to find Mike at the track so we could go to the hospital (a story that later alarmed the nurses!).
  • A nurse gasped when my OB examined me and saw that the umbilical cord had prolapsed (earlier she had doubted me).
  • My OB told us that we had a choice: have a regular delivery and our baby would die, or transfer to Legacy Emanuel to have a c-section and give him a 50% chance of survival.
  • I had an emergency c-section, with general anesthesia, quite the opposite of the natural birth I'd dreamed of. Poor Mike had to wait to see who survived the surgery.
  • We were thrown into the previously unknown, foreign world of the neonatal intensive care unit (NICU), a story in itself. 
Kangaroo care
I have written plenty about what it's like to have a 24-week micropreemie, in such posts as Chris' full birth story, 10 things I wish I didn't know about prematurity, and Letter to a Micropreemie Parent. Six years ago, we revisited the NICU with Chris as part of a fundraising video for the hospital (tissues needed for that video!). Now that NICU as we knew it is no more. 

In its place is Randall Children's Hospital, where every NICU family has their own private room...a setup that we dreamed of and planned for many years ago as part of the NICU Family Advisory Board. What a different experience we would have had there for 117 days back in 1990, if we'd had privacy and a place to sleep. We could have been at Chris' side constantly, 24/7, instead of feeling like we were visitors all the time.

Freshman orientation
But back to my 1-pound-six-ounce miracle baby, who didn't speak until he was three. The one who just finished his freshman year at Pacific Lutheran University, my alma mater, where he hosted a weekly radio show and acted in several drama productions. The one who's been working his butt off this summer as a courtesy clerk at Safeway, often starting his shift at 6 a.m. or ending at 1:00 a.m., walking home in the pitch dark. The one who is one of the sweetest, kindest, most resilient, and most friendly people I know. The one who has always had a deep appreciation for life and family, because he knows he almost didn't survive.

Victoria, BC, last month
For example, this evening Kieran and Nick apologized to Chris for not having birthday gifts for him. Chris said they didn't need to buy him gifts, because the greatest gift he received was being around them and having them for brothers. 

Revisiting Legacy Emanuel
 Hospital, last month
I've grown used to having Chris at home with us again this summer, and I haven't faced up to the fact he'll be leaving again soon to return to college. I am good at that, trying to postpone thinking about the sad and hard stuff. I rewatched the Red Wagon video I linked to above, tears running down my face, even though I hate seeing myself on video. Thinking about the NICU always does that to me. It breaks me.

Birthday cupcakes, today!
These are the words by Elizabeth Stone we used to announce Chris' birth to the world, before we knew if he would survive or not:

“Making the decision to have a baby is momentous.
It is to decide forever to have your heart go walking around outside your body.”

Truly, that day that changed my life forever and turned me into a mom feels just like yesterday. One of the simultaneously best and worst days of my life made me wiser, more grateful, and more heart is there for all to see. Since August 23, 1996, I easily dissolve into tears.

Chris, you will always be my hero. Thank you for surviving, thriving, and becoming the wonderful young man you are today. I am so proud to be your mom.
With my miracle boy, now 20!
Just a reminder that he was 11 inches long at birth,
and now he towers over me!

Monday, August 8, 2016

I'm back, and so is my cholesteatoma

Sadly, it's true.

I have been missing my blog and intending to get back to it, so here I am. I learned this week that my cholesteatoma has returned and I need to have a fourth and final surgery: a modified radical mastoidectomy. As my friend Brad so aptly put it, it is another round of suckitude.

I suspected something might be amiss in my ear, because I'd had some ear pain a month ago and I could tell my hearing had worsened. Well, the reason for that was an enormous ball of hard wax. It took my ear surgeon 15 minutes of extremely painful digging around in my ear, followed by a strong sucking machine, to get that sucker out. And once it was out, he saw that the cholesteatoma had come back with a vengeance and was infected. Just lovely.

Even though I'd tried to brace myself for bad news, I teared up in his office, much to my embarrassment. The surgeon had planned to do a modified radical at my last surgery three years ago, but decided at the last minute to take a less invasive approach. I asked him, again, why he had decided not to go full bore, and he said my anatomy is complicated. Isn't that reassuring?

I was feeling very low and emotional after hearing this news first thing on a Tuesday morning, especially on the heels of news the previous day about our company's financial performance and my uncle having a stroke. I returned to my office and couldn't keep myself from crying. Suckitude.

The bad news forced me off to the gym--I figured I needed to work off the stress. That helped a bit. And then in the afternoon, I received this beautiful pick-me-up from Mike and the boys:

The next day I continued to feel puny, so at lunch I set out for the river. I've been rereading The Bell Jar for my book group this month, and Sylvia Plath (as Esther) describes her love of baths:

“There must be quite a few things a hot bath won't cure, but I don't know many of them. Whenever I'm sad I'm going to die, or so nervous I can't sleep, or in love with somebody I won't be seeing for a week, I slump down just so far and then I say: "I'll go take a hot bath.”

Well, I am not a huge fan of baths. But walking to any body of water (river, stream, lake, or ocean) is a curative for my soul. As I was standing out on the boat dock in the middle of the Willamette River, I could feel my resilient self rising again, realizing I just need to get through this. What can't be changed must be faced. I recalled hearing my mom describe how low maintenance and blase I was as a small child as I had surgery after surgery after surgery. I guess it's in my nature. 

By the time I returned to the office, I felt strong enough to call the surgeon's office and schedule my surgery for September 23. I have to schedule both a CT scan and an MRI before the surgery...I will try not to complain too much about that, as I suppose it's important for the surgeon to know where he's cutting.

I also discovered on my desk this lovely green stone, which my friend April gave to me...when I went to the beach with her and several other women in May, she had a bag of these beautiful stones and each one of us chose one out of the bag. When I saw "courage," I thought, "hmm...wonder why I need courage." Now I know why I needed that stone. Divine chance. 

 A brief visit with close friends filled with laughter, combined with messages of amazing support from friends and family, and I feel encircled with love and courage.