It’s been a rough week, as I complained in this post and I’ve been thinking a lot about coping. Or how I don’t cope, sometimes.
And it’s also been discussed on one of my preemie groups.
I didn’t blog when I was on bedrest, nor did we blog in the first couple critical months of Bennett’s NICU stay. We started when Bennett was 2 months old and off the oscillating vent - not because we were avoiding blogging, but because Kit hadn’t mentioned the idea yet and he set it up for us. I have emails from that time period, what we sent out to family and some personal emails I sent to close friends to describe how we were feeling/doing. How we were coping… but our blog was really focused on updates. He weighs this much, is having this surgery, this much oxygen, this challenge. It was the technical stuff, it was not discussing the emotional aspect and the way we were barely surviving, barely keeping our heads above the water and sometimes going completely under and floundering wildly while we felt we were drowning.
So it’s on my mind a lot. HOW DID WE GET THROUGH THAT?? How did we survive in tact? (Do we count as still in tact??) The social worker right after Bennett was born told us the divorce rate among NICU parents was 85%. That’s pretty atrocious. We were told so many statistics, about Bennett’s possibilities. How did we not just collapse in a sobbing heap of exhaustion and despair??
Oh, wait. I did. A lot.
But how are we still standing? Not that I mean in any way to hold us up as an example of NICU coping skills because believe me, I need work on the coping skills. I just wonder why was I not institutionalized? A mom being treated for anxiety BEFORE she went on bedrest with a high risk pregnancy that then landed in the NICU with a 23 weeker? A dad with bipolar disorder? With a one year old and three year old at home to care for? How were we even coherent?? We probably weren’t, huh? But I look at pictures from back then and I see us smiling. I see my kids dressed (though I’m sure that was Aunt Jenny & Kit’s doing, I doubt I dressed them) and I read the emails I wrote or the blog posts. Somehow we kept putting one foot in front of the other. We bought groceries, we paid bills, we attended church, we made cute movies of the kids. Somehow we functioned.
How? That’s what I’m pondering, as I look back on that year of my life. How am I still standing? Me, the one that crumbles into a ball of incapacitation when the anxiety starts to eat my mind.
As Kit said last night, we’re still processing. We’re still trying to sort out what happened. A friend shared an analogy - it’s like getting hit by a truck. And then getting dragged behind the truck.
(She was talking about labor, but I think the analogy fits preemie parenting as well.)
I’ve written before on our school blog about burn out and coping ideas I’ve read. Some are good for life in general, not just school related. But I wanted to think about what things helped us get through the 3 months of bedrest/4months of NICU/PICU stay/first year of Bennett’s life. These are mostly spiritual. The friends and family support, the logistical help of meals and babysitting was invaluable, the external help allowed us to focus on our kids and that was a priceless gift… but I’m wondering about the mental/emotional/spiritual side. What kept us going long past the point our bodies were ready to give up? Past the point our fragile mental health would normally have been able to sustain us? Because we were nuts BEFORE this happened, so really… it’s fascinating to me that Kit and I can pass for sane.
In no particular order -
- prayer. And not the down on my knees, formal praying. But the begging, pleading, desperately pouring out my heart and fears and anger and frustrations type of prayer. While in bed, clutching my pregnant belly. While driving to the NICU, while rocking my babies to sleep, while trying to ignore the beeping monitors and ventilator and IVs and trying to see only my son’s incredible spirit in his frail body. Desperate prayer. Over and over, I can still remember a few nights in particular. When I felt completely beyond my ability to handle one more minute of the pain and fear and uncertainty, I was given comfort.
- Priesthood blessings. While pregnant, before Bennett’s surgeries, right after he was born, anytime I felt that my heart was being ripped from my chest and crushed. Feeling Kit’s hands on my head and hearing his voice, feeling the confirmation of the Spirit as I heard those words of comfort and peace and reassurance promised. Recording those words in my journal, clinging to those words while trying to have faith that they would be fulfilled. And seeing them fulfilled - not always in the way I expected, but they have always been fulfilled, no matter how I struggled to believe them. Even now, I remember the words and I am truly stunned to realize they were the truth. I doubted, but those blessings have been fulfilled.
- Scriptures, Kit suggested I write down verses that really spoke to me during Bennett’s pregnancy. About faith and prayer and promises and hope. So I wasn’t taking any time to sit down and read scriptures daily but I had those verses that would come to mind when I most needed them. Certain passages will still leap out at me and they comfort me, as I try to understand what happened. Christ raising Lazarus from the dead. In particular that one comforted me - not that Christ raised the dead because I know he can do that, but everything leading up to it and how Christ wept with them, though he knew Lazarus was about to be raised. That he waited… he did not go and heal Lazarus from the illness, but he waited and the miracle, the witness, was that much greater. I’m not expressing myself well… it really, really impacted me and I pondered that a lot. Why he waited, why he wept, why the Savior chose to do it that way.
- The Infinite Atonement which again, I did not have time to read but had read prior to bedrest. Especially the chapters on “Infinite in Suffering” and “The Blessing of Peace of Mind” and “The Blessing of Succor.” They are not long chapters, but their are full of depth and peace.
- I did not have time to attend the temple for a session but I was able to go for shorter periods of time and do other ordinances. Just sitting in the temple recharged me. Of course, we’re promised it will.
We had a neat experience in the temple while pregnant with Bennett and returning there let me reflect on those moments.
- Taking the sacrament. While on bedrest and at the hospital they brought it to me, but being able to go back to church and have those moments of peace and reflection. It was HARD, on so many levels, to go back to church and face the questions and people and the concern was appreciated but often exhausting. To answer the questions when I had no answers. But spiritually, I was grateful to be back.
- Music. My first Sunday back at church the hymn sung was “How Firm a Foundation” and when we sang this one verse I cried. After 3 months of not being able to stand and not sure if Bennett would survive the week, I felt like it was written for me.
“Fear not, I am with thee, oh, be not dismayed,
For I am thy God and will still give thee aid;
I’ll strengthen thee, help thee, and cause thee to stand,
Upheld by My righteous, omnipotent hand.”
Music helped, not just religious music but any song I found comforting and inspiring…
- Listening to General Conference, reading the articles or listening to the talks (which are now available as MP3s on the church website.) I bought them on CD and listened to them as I drove to the NICU to nurse Bennett. I kept the CDs for him, so when he’s older he can hear what was said while he was in the hospital, hear the counsel from our prophet.
- Kit. He was my physical, emotional, spiritual, and mental source of constant support and strength. He’ll disagree, but I cannot think of any moment that he seemed to ever waiver, ever doubt, ever fear after Bennett’s first 24 hours. During that first 24 hours we had some experiences that had us both knocked completely flat in shock and I think during that first day we both were left feeling unsure of what was happening. But with a friend’s help he administered a blessing to Bennett when he was just a day old and when Kit came back from the NICU after the blessing it was like he never again questioned or doubted that Bennett was coming home to us. (In fact, he was so confident about Bennett’s outcome that I remember yelling at him that he was in denial.) We both coped in different ways, and I really worried about how this stress would impact him with the bipolar disorder, but Kit has been our family’s rock.
I wanted to write this in large part because we are still working through this… when Bennett was 10 months old/6 months adjusted we started trying for Miss Emiline. He had literally just come off oxygen so not exactly “stable” yet, but we felt good about trying. Then we had Emy’s anxiety filled pregnancy and she was a model baby in utero but we were juggling so many emotions at once!! Wow, it was nerve wracking. It’s not like we had any idea what challenges Bennett was going to face yet, he was still so tiny. But we felt it was best to have our next baby and here she is (trying to help me type this with her forehead. Thanks, Emiline.) And then after more prayer, we decided to ask for even MORE miracles and blessings and we’ve got Mojo on the way. So really, we’ve not slowed down much to ponder the preemie thing. We talk about it, I blog about it, we read articles on post traumatic stress and we keep each other informed when we’re struggling with the emotions still. We saw a therapist, we try to address the impact prematurity left on us and the other children - besides all the obvious ways it impacted Bennett and the ways yet unknown it will influence his life…
But the wild, wild ride of getting Bennett here began almost 4 years ago (summer of 2004) and he’s now three years old. Wow, I can’t believe it’s been that long! He came home from the NICU 3 years ago on May 17th. The first thing Bennett said this morning was, “I need my helicopter.” I asked where it was and he said, “In my room.” I told him to go get it.
Kit made them whirly-copters and Bennett keeps climbing things to try and throw his whirly-copter off of heights. Part of my brain still has not processed that Bennett is here. That sounds bad, but I spent so long preparing to lose him that all these years later I still stare at him and sometimes think, “You are HERE! They said you wouldn’t be, and you’re here!” Generally those moments of reflection only come when he’s asleep because otherwise I’m too distracted by trying to stop him from teaching his baby sister to climb the bunk bed ladder or conspiring to climb the bar stool to get into the top cabinet. Sometimes the life I imagined still comes to mind, in stark contrast to the reality that I am now juggling.
I’m still trying to figure out how to cope. It’s a daily challenge. I’m still trying to figure out how to balance. I get stressed, I yell at my kids, I snap at my husband, I want to run away sometimes. My constant, constant prayer is that I will be more grateful, more aware of my miracles, more appreciative of my family. I fail on a daily basis.
Sometime an hourly basis… and then I say a prayer and I try to keep going. I guess that’s how I cope.