First of all, everything’s okay.
Where to begin? I really don’t know. I suppose that’s why I started at the end. Everybody is fine. Everything is okay.
Just below is a picture of where I prefer to live. It’s the back pillow on my bed. To me it is the most comfortable spot in the house. I have two fans that circulate the air and keep it cool. Good books are within reach. Most important of all, I can put my knees straight, because when i can’t, they ache and my feet swell. I’ve missed this spot. It is where I am sitting now, have been sitting for hours, and intend to remain until sometime tomorrow.
I may, or may not, have sung or hummed this this afternoon as I relaxed into my favorite spot, with my legs comfortably stretched in front of me, for the first time in what seems like forever, but actually isn’t even all that long.
Maybe a few days, but packed within those days, many years worth of drama has been smooshed.
I supposed it started a couple of weeks ago, with that phone call. You know the kind of phone call. Only this time- well. I can’t go there yet. And really, perhaps it started even further back, when I accidentally volunteered myself to scout a location and help host a conference of about 90 people, 15 of whom would be staying in my house.
No. If I am to be completely honest, it probably started even further back than that, maybe when I married the man I did and we had the children we did.
But this is already too long, and so I will just say that, entirely through my fault, and yet entirely accidentally, there was this event. And I was the local person and the hostess of 15 coming from all over the world (really). So you might have noticed all the baking and cooking and freezer meals I was making a couple weeks ago. That was why.
And the Queen Anne’s Lace- that was for cause.
Because I needed to know how long it would keep in a jar of water so that others could make bouquets with it.
And then just a little more than two weeks ago I was grocery shopping after picking up my son from something- swim team? Football practice? Summer school? I don’t know. My brain is like a white-board, and somebody has come and swiped clear wide swathes of information I knew before and after a little more than two weeks ago.
We came home from grocery shopping. I would still need to go back and get a handful of items that were better put off until the last minute, but this was my last big push at the grocery store. The pick-up had a lot of bags in the back. I picked up a couple of bags and started toward the house when my phone rang. I was going to go on into the house and put the bags down and sit down comfortably and call back the number I was sure I would miss, but for some reason, I felt that was a very bad idea. The fact that I knew our fifth daughter had been in labour for a really long time by then may have had something to do with it. There was a chair in the garage. I sat down and answered the phone.
My daughter’s midwife, calm, cheerful, and assuring, began to speak. As she spoke, I began to cry.
Understand, I am telling you, as I did in the beginning, everything is okay. It is, it really is. She’s fine, the baby’s fine, and they are probably coming home tomorrow. Everything is okay. But I didn’t know that then.
There were words said that were not okay. Words about oxygen, breathing, cord knots, helicoptors, and paramedics. Do you know that in the last ten years or so, this is the third family member life-flighted out by helicopter? This is the fourth event to which I am closely related where somebody was life-flighted out by helicoptor and one of those events involved fatalities. These are not the sorts of words about which anybody in my family is sanguine (well, for goodness sake, WHO IS?). As the midwife spoke and I cried, my husband came dashing out the door- he had hoped to get to me first, although I do not think that would have been better. He and my son finished unloading the groceries while I sat in the garage and cried.
The midwife kept talking, and I kept crying. Then she finished, and I was done crying. I asked who needed me most. Where should I go? To my daughter’s house, where she was still not finished with the birthing process, and now had to finish without her baby, without her husband (who was being driven down the highway to the children’s hospital)? Or should we also drive with all possible speed, to the children’s hospital 3 hours away? The midwife consulted our little girl, and she said the hospital.
I walked inside and began packing what my husband now calls Grandma’s Deployment Bag. I think it’s gone to all 8 hospital life or death emergencies we’ve had in the last 12 years, unless it’s 12 in the last 8 years. I don’t know, and I don’t want to think about it. I know what to pack. I didn’t have to think about it because I’ve done it so often. I was calm enough to think, “I hate that I’m so good at this.”
I prayed. Sometimes with all due requisite respect, reverence, and faith. Sometimes bitterly. “Don’t do this to Moptop and Pip,” I pleaded sometimes. But other times, “Don’t do this to Moptop and Pip,” I ordered, angrily. “They do NOT deserve this,” I declared. I knew that nobody does, or everybody does, and I know it’s nonsense to talk to the Creator about what anybody deserves. My theology and my attitude do not always match up well. The puzzle pieces have broken. In between “the Lord giveth and the Lord taketh away, blessed be the name of the Lord” prayers, there were just as many prayers that went something like, “But not Pip, Lord. Not her. Don’t do this to her. It’s not fair. Just don’t. Spare her.” I don’t know what else I said or how many ways I said it. It was a running refrain during the perhaps fifteen minutes it took to pack my bag and the Cherub’s. My husband poked his head in and asked what he should do. I told him to put away the refrigerated stuff only. I had intended to make one more meal with it, but no more. He looked at my packed bag with admiration and said something about how good I was at packing fast in emergencies, and I sharply replied with a word or two about what I thought about the life that has made me good at packing fast in emergencies.
We left for the hospital, groceries on the counter and floor, laundry unfolded, many tasks preparing for houseguests incomplete, messes everywhere. We dropped our son off somewhere, I think. I have no memory of where he ended up or what we did with him. That’s another point where somebody swiped away the whiteboard of my mind. It’s a complete blank. We took the Cherub to our eldest girl’s house I think. As we drove, I texted to let people who were coming to my house in just a few days know, to ask for prayers, and I prayed. I also slept, because I do that when highly stressed.
We should know our way around that hospital, but we didn’t because they’ve built a new wing, a new parking garage, and rearranged things (huge improvement, all of it). So I wandered through the hospital trying to figure out where I should be. I finally found the front desk and said “My grandson? Newborn? Lifeflighted-” The lady was nodding before I finished saying newborn. This was memorable- and recent. She sent me to the correct floor. Somewhere between entering the hospital and getting to the correct floor, I set down my water bottle. This disturbs me more than it should. It’s not the water bottle. It’s that I really have absolutely no idea where I was or what I could have done when I set it down, and it wasn’t at that front desk. I hate missing pieces of my memory like this.
I arrived and our son-in-law and his parents were in a small, private room. Their faces were grim and tear-stained. They tried to explain. The new father was wracked with grief for his son. The old parents were wracked with grief for their son and their grandson. I had just missed the doctor. I understand that words had been used like brain damage. No reflexes. Severe. A hospital stay of weeks to months. No smiles. No encouragement- not in a cruel way, but honest. There was no desire to offer false hope, and there was no reason to hope. Their minds were racing ahead to years of bills, tubes, nurses, doctors, special equipment, special vehicles, specialists, and no hope for meaningful communication.
My mind was stuck in one place, a deep rut that I was making deeper and deeper with every second. “Where is my daughter?” I asked aloud. I didn’t care about those scary things in that scary future, and brain damage is not unknown territory for us anyway. I wanted to see my child, my little girl. This one:
But she was not there yet. It turned out, she hadn’t even left her house yet. Later I would learn, in bits and pieces, of a blood clot, and bleeding (which here may mean hemorrhaging) , and things her mommy didn’t want to have happen to her, which is why I would only learn about them in bits and pieces, and only when I had enough information to ask specific and pointed questions. Such as when I went back to her house to pick up some more clothes and saw the blood stain the size of Texas on the mattress and asked my child why on earth her mattress looked like a serial killer had been using it. She would give me that quirky, quiet, sideways smile I know so well and say, “Oh. Well, I did tell you…” and there would be the little dollop of information I’d been given, the tip of the proverbial iceberg amount of information, the just enough to keep mom from asking any real questions that might reveal just how bad it was dollops of information.
Meanwhile, we waited, and I prayed for that little girl who should not have to endure this cup of anguish. I told you, my theology and my attitude and feelings don’t really match up well anymore.
We couldn’t go back yet, or maybe we did. I sometimes think we did go back then, before she got there, but then I think I am quite sure I’m wrong. We were allowed, briefly, to go back at some point. I don’t remember exactly when. I remember what we saw, and did not see, when we went back. He was beautiful, frail, precious, adorable. I loved him on sight. His pupils didn’t respond to light. His fingers didn’t flex around mine when I laid an index finger in his palm. He had tubes everywhere, wires, and he was cold (they wanted him to be cold, it was part of his therapy, but it’s unsettling, nonetheless).
In a quiet and private moment every grandparent in this situation knows that what they most care about is that their own children not endure this pain. If we could turn back the clock and make this not happen, we would. But what our children are thinking about is their children, and they are already as far gone in love with their children as we ever were or will be with ours, and they will not thank us for this thought. It’s a hideous thought, and yet it is one, I think, that first strikes every grandparent in the NICU when they see their own children in so much pain. *WE* would gladly endure that pain for them, and we must respect their right and privilege to endure it for their children as well.
These are words I am saying and they are true words, but you will not listen, should you endure this. I don’t even listen to myself. If it happens again, I will feel the same way again, at the beginning. After all, I had already experienced this four and a half years ago when the Striderling was born and spent 41 days in the NICU and I hated how his mother suffered and knew even then she wouldn’t thank me for that. (I know I should hate how my sons-in-law suffer and grieve as well, and I do feel great heart-ache for them, but frankly, not so much as for my daughters, not nearly). In the first few days after childbirth, all my energy and attention is for my daughters, just as theirs is for their children. So I waited, and thought about my little girl, and wished I could spare her everything painful in her life, but I knew I couldn’t. I couldn’t even spare her when I was one of the painful things in her life, how could I be so arrogant as to suppose I could do anything at all to lift any part of this burden from her shoulders, or if I could, that she would want me to?
Somewhere in the inbetween time when my child wasn’t there yet, people came to visit, to share in grief, to support. There wasn’t room in the tiny conference room where family can grieve quietly, privately. So we stood in the hall. When I couldn’t stand anymore, I walked into another more public family waiting area so I could sit, and at that moment somebody called out to me that my daughter had come. I quickly went back out, and was faced, not with the pig-tailed little munchkin above, of course. I knew, really, that she was an adult. I’d watched her get married a year and a half ago. I’d celebrated her 18th birthday nearly six years ago. I know I wouldn’t see my pig-tailed munchkin. But I didn’t know I would be seeing a Madonna.
She was not visibly in distress. She looked strong, confident, and motivated. Her cheeks were flushed with the energy she was using to get to her goal, but she did not seem to have been crying. She was kind and polite and gracious to everybody, but I could feel her urgency pulsing under her skin. We were a thousand miles away from her, even when we hugged her. She had not yet held her son, had only seen him for moments. She nudged her husband toward the double doors through which lay their son, unresponsive, wrapped in cords and tubes, laid out on a cooling blanket. Her husband picked up their bags, turned, talked to us some more, set the bags down. His wife nudged him again. He picked them up, moved away a foot, set them down and talked nervously. His wife, not my little girl, his wife, nudged him again, and then sailed down the hall, to all appearances strong, serene, determined to get to her child and worried about nothing else.
I watched her and felt my spirits rise. Her in-laws asked me in wonder if she was really doing as well as she seemed to be doing. I shrugged a little. I didn’t know, but I kind of thought so. Did that mean she would continue to handle it so well the next day? I did not know that, either. But it turned out that the answer was also mostly yes.
In slightly over two weeks, I am sure she has grieved at times privately, but I have only seen her cry twice, and neither time was over her son. Once, she simply wanted to take her child and go home, and half the tears were just sleep deprivation. “Just” is not really an adequate modifier for sleep deprivation.
I am not an optimist by nature. I always fear the worst, and this doesn’t really bother me because for me, it is worse to hope for the best and then be disappointed or crushed – again, and then again. I am darkly realistic, and believing the worst is truly less painful to me than hoping for something better and being disappointed. This bothers my husband, a lot. But it is who I am. Usually. This time, as I watched that golden-haired Madonna who had once been my little girl sail serenely down the hall (even while I was also realizing that the serenity could have been merely an act, to allow her out of the public eye and into the private NICU room with her child), I felt my spirits lift. I turned to the circle of heartbroken friends and family standing in a huddle in the hall.
“I’m just going to believe things are going to be fine,” I said confidently (obnoxiously). “Because it won’t make any difference if I don’t.” My husband cheered. He’s proud. I find this annoying. It took me no more effort to feel this way than it does to feel the way I usually do. Nothing about me had changed. I wasn’t ‘trying’ to be positive. I wasn’t expending any effort to be upbeat. I was simply, merely, putting words to my feelings, exactly as I have done before. For some reason, I simply felt completely confident it was going to be okay, because that Madonna was this child’s mother, and when he had recovered his equilibrium, the MopTop, the prop and support of that Madonna (his absence was the other reason I’d seen her shed a tear), would be a fabulous father (after all, he’d been sleepless for two days and was frantically worried about TWO people, I’d only worried really about one, and that young Madonna was only worried about getting to hold her child).
Later I learned that she had told her husband that no matter what, God knew all the problems that their son would ever have and had given him to them anyway. He proudly said it was the best, most helpful piece of advice he’d heard, and I knew I was right to feel confident that together, they could do it, whatever ‘it’ was.
For a few more hours, maybe even three days, ‘it’ looked it was going to be pretty rough. There was talk of brain damage, organ failure, kidney damage, liver damage, seizures, more brain damage, a skull fracture, more. But one by one, things began to just change. The liver healed. He started to show reflexes, first sluggishly, then more within the range we call ‘normal.’ His kidneys began to function- almost overnight. The seizures stopped. There was no fracture. And so it went.
The Moptop’s mother, who is truly just one of the sweetest, nicest people in the entire universe- I may have met many people I liked as well, but I don’t think I’ve ever met anybody I admired or liked more- took a beautiful picture of the three of them, the parents leaning over the electronic bed (he was on a cooling blanket, a fairly recent technology), smiling down on him. The young mother was again, serene, loving, devoted, Madonna-like. I keep using that word, and I just don’t know a better one. She appears to have known what she was doing and why she was there and what she needed to do from the first moment. I knew again that it was going to be fine. I made the picture my desk-top background for a few days, telling the other grandmother that whenever I forget that I mean to be optimistic, I look at that picture, and then I know. It’s going to be fine. Even if there is long-term brain-damage, it is going to be fine.
(It would come much later, but some of my 13 houseguests have known, via the internet, my children for 17 years now, or nearly 18. We refer to each other as Aunties to one another’s children. When I showed the Aunties that picture, they nodded in understanding. “This is a Mother,” one of them said, speaking aloud the truth we all saw. She wasn’t my child. She was one of the sisterhood of those who walk with their hearts outside their bodies. She was one of us.)
Meanwhile, I was still expecting company, and I surfaced from the NICU stuff to see that they were urgently and kindly scrambling to come up with other arrangements. After all, they couldn’t change their flights (did I mention all over the world?), and people were coming to see them. By day three we had had nothing but continuously better news, although still nothing like an all-clear had been given, the grimly unpromising doctor of the first night smiled and said the words ‘cautiously optimistic.’ So I assured them they could come to my house. I might not be there, but all the stuff they needed was, and it would be easier than trying to figure out other arrangements. I met the first three at the house, introduced them to the freezers, showed the bathrooms and some of the beds, and left again. Later I remembered to email them a list of what I remembered was in the freezers and pantry, and then I put them out of my mind, or, more accurately, I just forgot about them and focused on NICU stuff.
At the NICU I really didn’t seem to be needed much. Mostly, I prayed, which I could do anywhere.
I wandered giftshops and texted back pictures of things, asking if she wanted them:
I supervised the new baby’s cousins in the hospital so that the big sister and little sister, now sharing the experience of NICU mama, could have alone time to really talk to each other.
“Supervised” may not be the best choice of words for what I did. Aided and abetted, perhaps, is a more fitting description.
I sometimes stayed the night with friends in the same town where the hospital is, and sometimes went to the HG’s house because she’s halfway between and I could snuggle a grandchild or two for comfort, and delude myself that I was being helpful there even if I wasn’t truly necessary in the NICU.
And then, finally, I got to snuggle the newest grandbaby.
In the wee hours of the morning when I could not sleep, I prayed more, and I coloured silly pictures online:
And I worked on things that I could work on for the other project at home.
I also took selfies of my swollen feet and legs at the end of the longer days, wondering why on earth my ankles looked like they were boa constrictors who had swallowed camels.
And I know that there are too many pictures and words about me and not about everybody else who really matters, but certain people are more private than certain other people and that’s all there is to say about that.
At one point, somebody said something that bugged me, and then somebody else said it again, and then I got annoyed. They said they were praying for the baby, but they were also praying even harder that we would just accept the outcome, whatever it was, and no matter how bad it was. And I flicked my hand at that thought, only inside where it could not be seen, flicking like you do when a gnat has flown too close to your face, and I thought, “Don’t waste my time” because I am kind of an impatient jerk. I thought about it some more.
I wrote it down, because that is what I do. I was blunt, because that is what I do. I posted it to facebook, also what I do.
I said, among other things:
“We are not strangers to adversity and hard things [this is true of Mop-Top’s family, too]. We’ll deal with it, whatever ‘it’ is, when we come to it. Please know I am saying this without rancor or anything but good cheer- but don’t waste your time and energy praying for us to be able to accept whatever happens. We’ve read Job. We know how it ends. We know the baby will be fine no matter what and God loves this baby more than we do. We know that whatever happens, God is in control and we can accept that. We will deal.
But *meanwhile*, ‘while it is still today’ I personally would rather every minute of every prayer was focused on total healing and recovery for this baby, because I don’t see why we should bring a thimble to God and ask Him to fill it when He’s got the whole world in His hands, and abundant goodness to share, pressed down, flowing over. So, let-go, full throttle open prayers for amazing, astonishing, leaves the doctors speechless in wonder recovery for this baby are what we’re seeking now. We’ll deal with anything less when or if we need to.”
The delightful other grandma posted along the same lines, and she and other people started reminding people to pray big, and big things started happening. Things they had worried about just disappeared. Seizures stopped. Maintaining his own body temp started. Evidence of a skull fracture from birth, there was none after all. And on it went.
And then the grim doctor smiled a little more, and said that when our little fellow had presented at the hospital, they classified him as severely brain damaged from oxygen deprivation (he had a true knot in his cord, and about 1 in 2,000 babies have this outcome, and it didn’t matter if it was at home or the hospital, they would not have caught it). But the MRI showed that he could be upgraded from severe to the border of mild and moderate, and that nobody could predict what that might mean for him- anything at all, from needing special ed support all his life to being a little stiff in his ankle joints or something in between. Anything. His parents just need to do things for him in the meantime. Things like read, talk, sing, tell stories- the sorts of things these parents couldn’t be stopped from doing if you threatened them with prison. If for some reason they decided they should not do those things, these parents just wouldn’t even remember NOT to tell stories, NOT to sing, NOT to provide a stimulating environment. In fact, they had to avoid that for three days while he was on the cooling blanket, and that was hard.
Everything was, in fact, so fine, that I went home for three days and did that thing with all those people and it was lovely, lovelier even than this flower arrangement (which was quite stunning as you see, and all done with wild flowers):
We picked a lot of these together, then they picked some more, and at first it just looked like a bunch of brambles and weeds, and then it began to look fuller, and more lovely, and then a master hand tweaked and a master eye looked and tweaked a bit more, and in the end it was magnificent.
And these lives will be and are the same- there is a master hand at work, creating, tweaking, perfecting. And the end is magnificent.
No matter what.