It’s been quite a while since I’ve written, for a variety of reasons. First of all, of course, is that I’ve been learning how to take care of a newborn. It’s been an adventure, for certain. Beautiful and wonderful and hard and tiring and scary and all the things that go along with being a new parent. The trick is, I should know these things. I have been a parent before. But the first round was very intense…full of hyper-vigilant focus and stress and, when I think about it, the same words I used to describe our current adventure…beautiful, wonderful, hard, tiring, scary. Part of the navigation of the new is also sweeping through our first trip, picking up bits and pieces along the way. Often, as with the first months after Bennie was gone, I find myself thinking it was all a dream. That my son was still here, sleeping in the room to the west. He was running and playing and growing and laughing and learning to love his new little sister. Sometimes, people forget. I’m sure not purposefully. They say things like, “well that’s what it’s like with the second child” or other things and I think “oh, how I’d like to know how that feels”. Because even though Zoey is our second, in so many ways she is our first. The first to come home. The first to figure out how to feed, how to bathe, how to help learn to sleep and roll over and smile. How I wish I had those moments with Bennie. It breaks my heart sometimes that I didn’t. I don’t let myself fall into that sad place often because it breaks my promise to him…to live in the moment, to not take a second for granted. I leave space for all of it and let myself linger when I need to. I often see families, with mothers who look stressed and at the end of their rope. And I understand that now in a different way than I did last year at this time, when I was stressed but for different reasons. One of the biggest gifts that Bennie gave me was to know that even the hardest moments can be good. Now that does not mean that I slide through those moments now, full of grace and gratitude. No, I get frustrated when Zoey won’t sleep, I get cranky when I can’t figure out the work/family balance. I get down right mean when it comes to milk production. But, I also try to remind myself to breathe. And I look at Zoey’s sweet face (or screaming face, depending on the moment) and I think about her brother and how they have the same nose and the same “don’t give me any sh*!” look and the same cute dimply hands. And I realize how much he is here with us. Everyday. I miss him. Everyday. I love him. Everyday. We are working on our first gifts from his foundation and that fills my heart up pretty well. I sit and I look at Zoey, sucking her fingers and cooing, and I realize that she is so much her own little person but also such a reflection of her brother in so many ways. It helps, to see that. It helps to understand how much love you can feel for one little person, both here and not. My heart grows a little more every day…every time I look at those little chubby cheeks and when she stretches out her rolly legs and smiles big. Work/life balance. Living/loss balance. Partner/mother balance. It’s all there. With a few extra layers. And oh, how I love them. ❤
As Thanksgiving approaches, we are all bombarded with messages of how thankful people are, how thankful we should be, how many blessings lives are filled with. Those are all good, positive messages. But, kind of like the forced joviality of Christmas (read: consumerism), sometimes the idea of thankfulness feels very shallow and on the surface…lacking sincerity so that we will buy a bigger turkey, slap on a few more fall themed decorations, and drink our weight in pumpkin spiced ____________ (fill in the blank). Then, of course, if we do all of these things, our holiday will be exactly like the Norman Rockwell painting and our life will also reflect that aura of perfection.
The idea of this is good. The idea of this is full of love and hope and thanks giving. I like that. But, the reality is unattainable. It is too perfect. It is lacking the realities of life. Particularly if you are grieving. Last year, just a few months after losing our Bennie, we were faced with our first holiday without him…what should have been his first was, in fact, our first. Because after you lose a child, every day thereafter is a first without them. This is true after you lose a spouse, a parent, a sibling, a friend. Those firsts…uf…those are tough. We tried to be thankful. We wrote our thanks down and brought them to his grave so that he could be a part of our thanks giving. But mostly, we were heartbroken. Devastated. Sad. Confused about why this had happened. Those early days are dark and overwhelming and a place I hope not to revisit. Though, I know I will revisit them often. That is part of the cycle of loss and grief and memory. I have grown comfortable with that. I have grown accustomed to those visits. In some ways, they are comforting because even though those days were dark, they were close to him.
So, this year we face another first. Our daughters first holiday season. This is how it is supposed to be. Joyful. Sweet. Heart filling. Yet, in all those moments there is the hole that is Bennie sized. The laughter that we should be hearing. The discoveries he should be making. They go hand in hand. And while thanks giving can sometimes be hard when faced with those two companions, gratitude is not. Gratitude is easy. Gratitude for Zoey’s life. For her breath. For her joy. For her changing and growing. And at the same time, gratitude for her brother, who opened our hearts so wide to love that loving every single moment with his sister, even the hard ones, is easy…as simple as anything we’ve ever done. This year, we are grateful, oh so very grateful for our loves and our losses and our coming and our going. Happy Thanksgiving.
Today, our new daughter is 25 days old. Now, normally people mark the life of a newborn in months. But in our house, 25 days was a lifetime for her brother. This means that when we wake up tomorrow, she will have lived longer than he did. When I think about those 25 days last fall, they seem so much larger than that small amount of time. Because we knew that we had to try to fit as much life as we could into them. This taught us many things, but mostly that living in the moment was as important as breathing. To focus on what was happening that minute, that hour, that day. It changed the way we thought about how we had been living. That was a challenging transition, because we naturally had plans…for him, for his future, for our lives together. It was hard to give those up, to let those go and realize they would never be fulfilled. It made our loss full of many layers…loss of life, loss of hope, loss of possibility. It made the building of memories most important because time was short. Our days, our hours, our minutes with him were a gift. Every one of them. Even more so once we found out what was happening with his little body. In those last days, we realized what a miracle it was that he was still with us. The struggle he faced was big- 4 chest tubes, 2 ventilators, IVs, heart monitors, blood pressure cuffs, feeding tubes. And yet, there he was, bright eyed, alert, a precious little baby that didn’t know any different so he adapted to this life he had been given. Over time, the machines couldn’t keep that life moving forward. It was too hard. The limitless potential that we had dreamed for him was, in fact, limited by a pair of lungs.
Now, our Zoey has had a set of her own challenges. At 7 days old, she was admitted to the NICU because of breathing problems. We were there for many days without a diagnosis. She had unending tests. She had to be on a ventilator. It was traumatic as an independent incident. It was heartrending combined with her brother’s experience. Or really, combined with our experience of her brother’s life. There were moments when I could not separate the two. When I said ‘he’ instead of ‘she’. When I said his name instead of hers. When I asked, without thinking, what was being done for our son. It was too close. And the guilt of those mistakes, the guilt of those misspoken words…that was enormous on its own. How had we gotten here, again? How had we been given 3 perfect days at home, growing comfortable with eachother, getting to know eachother, learning how to live with eachother…only to have it taken away in the rush of ambulances and emergency rooms and transfers…to be sitting, once again, in an uncomfortable, sterile room full of monitors and noise and breast pumps and measured feedings? I knew, in my head, that this was different. That she was ok. That they just needed to figure out what was wrong. The ventilator went away quickly. The test began. There was the need to remove a provider who was not working in Zoey’s best interest. There was a change in plan of care. It was simple. And solvable. And would mean going home sooner than later. In my head, I understood all of this. But in my heart, I kept thinking that the other shoe would drop. That some terrible diagnosis would surface, just as we were gathering hope. Because THAT is what I understood about parenting. That overwhelming fear. That helplessness. That need to find the good in a mind numbing situation because that is my job as the mom. Interestingly, this time, living in the moment was easy. Thinking about the future was not. It was a shift that had been happening over the last year but made me stop in my tracks when I realized it. A reminder from a son who couldn’t stay with us to his parents and his sister. To remember that this life is a gift. Every bit of it. Every moment. And no matter what happened, we’d be ok. We’d figure it out. Because he was there helping us. Within a few days of this revelation, we were going home. And it seemed that we were back on track. And I remembered how long a few short days can be…both in a good and a bad way. But mostly good.
So, 25 days. A lifetime on one hand. A beginning on another. We must decide how to put those two stories together. Those two lives together. And tomorrow, one life will be longer than another. Another reminder that each day is precious. That my job, as the mom, is to live. And breathe. And be grateful, for 25 days. And for 26.
In 9 days, if not before, we’ll welcome our daughter into the world. One year ago as of last Sunday, we had to let our son leave it. The parallels astound a person if you really let yourself think about it. New life, just beginning. New life, just ending. For so long after Bennie returned to heaven, the feeling of fear was overwhelming. Perhaps more so than any other emotion. The fear of grief. The fear of how we would survive after he no longer could. The fear of returning to the world without him. The fear of seeing the faces of people who didn’t know what to say or what to do. The fear of moving through time and further away from his life. The fear of LIVING. It was strong and often pushed against our attempts to survive. Then, just 3 months later, we were blessed with this new life. This little person who perhaps would help us find our way. But, new fears joined those surrounding her brother. Would she be OK? Could it happen again? Would we survive if it did? How does a person give up control so totally and completely and trust in a higher power, a faith larger than the life of you or your children? Because in reality, there were many times when we were holding Bennie in our arms that we both said, “Why can’t it be me? Why can’t we be the ones to leave this life and let him live his? Who decided that was the path we would be on? Why have we been chosen to be on it? Why, out of all the people who have healthy, happy babies did we have a child who was “not compatible with life”? These are big, all encompassing kinds of questions that can never be answered. As with all grief, there is nothing simple about it. It is layered and hard and heavy and lasts forever. So, in facing the process of grief and joy all at once, some things have pushed through. One is this idea of fear…and how really it is perhaps more a sense of awe. Because in facing the death of a child and the birth of a child, there is a sense of the awesomeness of the universe. My husband laughs at me because sometimes I sit and put my hands on my stomach and feel our daughter kick and say, “It’s just so CRAZY to me that there is a PERSON growing in there. A living, breathing PERSON who formed from cells that decided to make a brain and a heart and arms and legs…that is ASTOUNDING to me.” Now, I get the medical side of it (at least as much as I ever will). I understand the idea of DNA and chromosomes and genetics. That’s all well and good. But you can’t tell me, if you’ve ever witnessed someone being born OR someone dying that there isn’t more to it than science. Because, whatever your belief system, there is a MAGIC about it that can’t be explained. The magic of birth is obvious…there is suddenly a new person that exists in the world. A tiny, amazing person who in their newness reminds us all of the fragility of life and the gift of that life that has been given to them and us. The magic of death, really, is very similar. The reminder that we are not in control. That the universe is bigger than we can ever understand. That life is fragile and each moment precious. It’s so interesting to me to think about those two pieces walking together through my life over the last 9 months. In some ways, they make sense together. Now, I would never say I am glad to have to find them on the same path. I would never wish for anyone to have to try to wrap their brain or their heart around the things we’ve had to this year. But as we move toward the potential for new life, the fear lingers, the lack of control worries, the unknown sometimes terrifies…but the magic of all of it, the understanding that it is not ours to decide, the knowing that we and she have some extra help from above…that often wins. Not always, but often. I’ll take that.
The verse above has been on my mind a lot as the days become fewer. Fearfully and wonderfully made. Yes. No matter the length of life, we are that. We are perfect because of our imperfections. We are hopeful because we know that hope is sometimes not easily found. We are grateful for each day because we have suffered a loss that reminds us that we can’t take them for granted. We are peace-filled because we know that our peace is dependent on the power of our grief, which really comes only because we have loved so deeply. I know that anxiety will carry it’s way with me next week. It has a place there. But I also know that we’ll have many travelling companions. Benton. Paul. Autumn. Jayce. Caleb. Josie. Aurora. Asher. August. Aubrey. A crowd of angels, all of whom left too soon. What better way to arrive in the world than surrounded, on both sides, by so much love? What a gift that is. What a gift these families have given us for sharing their stories and their children and their loss. That is not about fear. That is about strength. Powerful, soul filling strength that can see us through. It is wonderful, and my soul knows it well.
Sometimes, grief sneaks up. And sometimes, you expect it. Then, occasionally, it’s a mixture of the two. Today was one of those days. A day that is one day too soon. Or so it seems. You see, today is the day BEFORE we found out Bennie would not be able to stay with us here on earth. One day BEFORE everything about how we understood the world changed forever. One day BEFORE I expected to be bowled over by memories. I had planned for this day in my head…tomorrow. Not today. Maybe it was that very planning that made it all come today…somehow, my brain and my heart couldn’t deal with it tomorrow. So it came today. And while I was not so very surprised to be overwhelmed, since this month seems to be full of that, I was somehow surprised that it was today. I woke from dreams of Bennie that I haven’t had for nearly a year now. Dreams I had when we were with him in the hospital and just after we came home without him. Dreams of searching and running and pushing through brambles and trees, trying to find my son and not being able to. Ripping and tearing clothes, dark, dirt streaked hands and face, tears, screams. Terrifying and unsettling dreams that over time have settled and moved back. But there they were. Waking me. Reminding me. Pressing in on me. I got up. I paced. I snuggled my cat. I looked out into the night. I took deep breaths and repeated words that have provided some peace to me over the last 12 months. Eventually, I slept again. And woke again. Repeat. I got up. I got ready for work. I sat in my car as I drove and cried gulping, shaking tears. I asked some of Bennie’s people to give me some memories to help shore me up. I walked in and tried to push it back. To function. To make phone calls and answer e-mails and handle tasks. I came home and found myself exhausted. Unable to get up. To move. To do simple tasks like dishes. All I could do was sit and remember. Waking, one year and one day ago, full of hope. Finally getting a diagnosis so we could solve whatever the problem was. Trying to be joyful as it was my husbands birthday. Hours going by. No one talking to us. No one telling us. Being told to sit. Kindness and compassion from doctors who had to explain what they’d found. Hearing the results. Crumbling. Shock. Moving but not remembering. Feeling, in a physical way, our hearts breaking. One day. One day changes everything. Everything about life. And the fact that a person can make decisions they thought impossible and unimaginable because they must. Because of love. One day. A day early.
Today, Bennie would be 1. There are moments when that seems impossible. And then moments where it seems that the year has rushed by in such a way that I don’t even really remember most of it. There are lots of reasons for this I suppose. Grief has a funny way of erasing time…or making you lose track of it. My husband wrote this week about feeling like he was finally waking up, coming out of a fog. I suppose that is what is happening to me too in some ways. These anniversary dates make you realize, oh! Time HAS passed. More than I realized. Am I “better” now that it has been a year? Am I “healed”? No, I don’t suppose so. But, I am able to find space for both grief and joy. For both Bennie and Little Miss Sunshine. It’s been a stumbling, struggling, long, hard, complicated, and strange journey. It will be lifelong I think. Which I’m OK with. That in itself is a big leap forward. That acceptance that my love for Bennie will never fade, even as we move farther away from his life with us. That feels good. And peaceful. And hopeful.
The idea of hope has swirled around us for the last year. While we sat in the hospital with Benton last fall we began conjuring up the idea for a foundation to honor him, to keep his goodness going. Hope was always part of that, perhaps at first only in name but as time moved forward we could feel that hope in a tangible, physical way. It was necessary, like breath. We had to hold onto it or sink trying. Some days, it has been very hard to find it…hope is an elusive thing when you need it most. It slips and slides away from you, just out of your grasp because sometimes it feels like there isn’t any room for it in your broken, crumbling heart and your bruised and battered soul. But, somehow, it finds its way in…through grace, through kindness, through love, through faith. It sits and waits for you to find it. What a lovely thing that is…something so giving and patient in a time when you need it. I know I am much less so…I am impatient to be “OK” or “back to normal”…whatever that might be. I suppose that my normal can be what I make it. I am most certainly forever changed by having the privilege of being chosen to be Bennie’s mom. I wouldn’t give those 25 perfectly imperfect days back for anything. He is, was, and will always be the very best of me. So, happy birthday buddy. I love you and I will look for you in the sky and the beauty of sunrises and the breeze as it blows. I know you are here. And I miss you.
Today was a long one. Many appointments with specialists in Fargo to check up on little miss. These are the folks that come from “the cities” and only get to our part of the world once a month. They are nice, good people. They are kind because they are only seen by folks like me who have either had a loss or have had great problems conceiving or have some other underlying medical condition that may prompt a person to be referred. They are SO nice that it’s a little on the saccharine side to be honest. I’m not sure if they think I’ll break? Or break down? Maybe. I suppose that is pretty common. I also suppose they are often not the bearers of good news, so they are trained to be hyper sensitive to the emotional impacts that may occur. Anyhow, I went. I was scanned and scanned and tested and retested. Then, because she was NOT cooperative in letting them get pictures of her heart, I left with instructions to come back in 6 weeks and to have bi-weekly stress tests and once weekly ultrasounds starting in 2 weeks. Just to be on the safe side. So that we can achieve a “positive outcome” this time. I’d been gone about 45 minutes and was running errands when they called me back. They said they’d had a cancellation and if I was still in town, could I come back so they could give it another go? Sure. Why not. I had time. So, I turned around. And went back. And then, sat and waited for an hour. Now, in my head I understood that they only reason I was back was because they wanted to make sure all was well. To ease my mind. To reassure. But boy, let me tell you, that extra hour of waiting felt suspiciously like those 16 days of waiting to find out what was going on with Bennie. Suspiciously like that constant stress that presses on your mind and your body in a way that could easily lead to panic without trying too hard. I had to move around, I couldn’t sit still. I kept walking on that sixth floor, that same floor where Bennie lived for 7 days, just down the hall. That waiting area where we had to meet with social workers and fill out transfer paperwork and life insurance information. That same floor where we sat in a small room on the 5th day of his life for hours, waiting and praying that he would live after a bleb in his lung burst. That same floor where I sat in the bathroom and cried uncontrollably because I never knew that stress could literally cause NOTHING in your body or brain to work besides your tears. It seemed too close, all of it. Like it was pushing in one me. Now of course, how could they know any of this? How could they know what another trip, when I thought I was out of there, when I thought there was a plan and things were good, might do? How could I know? I’d geared myself up to be there. I’d thought it through in my head. But then, I had to come back. I wasn’t ready. I wasn’t prepared. I was a big old ball of nervous energy that had no where to go.
So, after a time, they called me back. I laid on the ultrasound table, again. They tried to take her picture, again. They were not successful. The tech looked at me and said, “Well, I hope she is not as stubborn as this when she comes out!” and I laughed and said she was probably genetically destined to be stubborn. And then the doctor, who was so lovely before, came back. And she asked me about Bennie. Which she had not before, other than to say she was sorry for my loss. And I cried a little and said I was sorry but that he had lived…LIVED…just down the hall and it was catching up with me. And this lovely woman, who I had met only a few hours before, looked at me and said, “You just have to trust that God will be with you, because who can live without that? I am sure your son knew.” And she turned and walked away. This was the very LAST thing I thought I’d hear from a medical provider. They typically steer FAR clear of any religiosity. They tell you facts and statistics and quote Latin. And in those moments after she left, that push of anxiety left too. Simple as that. I know this would not have comforted everyone and I am sure in some cases it may have even offended them. I am sure that she could not know what it would do for me. But I can tell you, the firmness of her conviction made sense to me in a way that no medical terminology ever would have. So, today I am grateful for this specialist…who helped me in more ways than one.