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.
I am not sure why people love being pregnant. Now, I get the joy and excitement part of it. The anticipation. The feel of movement and new life growing. I do love those pieces. But in terms of the day to day, who loves it? I know some people do. And I love them! But for me, pregnancy has not been easy for a few reasons. The obvious one this round is stress. And anxiety. A whole lot of that. I think so often about all you read telling you that your baby takes on whatever you take on in terms of stress levels, fatigue, health problems, etc. I read the blogs and the books and the magazines telling you how to have a “worry free” pregnancy…and honestly, I really just wonder who writes these things?! Who has the capacity to live life, with all its ups and downs, and then find their zen while trying to grow a person who makes you bloated and have never ending nausea and so many other digestive problems that I cannot even begin to describe the level of discomfort and makes you lose your ankles by noon every day and not sleep soundly and makes your back hurt and your hips hurt and acne to sprout on your face like you are a teenager…and on and on. I haven’t the slightest clue how to “cultivate peace” while all of that is going on. Add to that the triggers associated with grief that sneak up when you least expect them and the joys of crazy blood sugars and you have the trifecta of “holy crap, I don’t think I can do this!” post-loss pregnancy meltdown.
Every pregnancy has its bumps, both literal and figurative. The baby bump, which seems to grow exponentially in these last months to reach a size making it appear you have swallowed a watermelon whole. It’s sort of awesome in terms of wiggle…the force of the movements is rather breathtaking and amazing. This time, I find myself giving in to the need to connect to this person growing inside of me. I have been resisting that connection because I felt like my heart couldn’t take the potential of loss…but in a strange way, this very resistance has actually made me MORE aware of the gift of each day of life for this child of mine, whether that is in the womb or outside of it. So, I talk to her more than I did Bennie. I sing. I tell her what I’m doing. I “hold” her at night as we drift to sleep and tell her goodnight along with her brother. My niece has named her Cheesy and every time I see her she kisses my belly and pats it and says hi. It makes me smile. I have named her Little Miss Sunshine, because it seems to fit how I feel about her…and reminds me of one of my favorite books as a kid that tells the story of a little girls going to Miseryland and how she shows them how to be happy. Seems appropriate. I think of how fortunate I am to be carrying this person and how fortunate I was to carry Bennie and have so much time with him. I think the first time I was anxious for other reasons…and I lost track of the gratitude for much of my pregnancy. This time, whatever the outcome, I realize that I need to be fully aware of that gratitude. So, in some ways, the potential for loss has actually both pushed and pulled me all at once. Pulled me away to protect myself and yet pushed me toward this new life. It’s an interesting balance.
Sometimes the bumps take an emotional form. When at counseling, they call these moments of grief “triggers”. I don’t know if that’s the best word because to me, they often feel more like steamrollers, pushing you down with a force that you didn’t realize was still possible. They can be little things, like a song or a smell or a sound…for example, sometimes when I am shopping the noise the scanner makes at that grocery store suddenly pushes me back to the hospital and the sound of the machines in the NICU. And it’s like I am there, in that room, instead of buying fruit. Sometimes, the quiet of a space does the same thing…it takes me back to the moment we turned the machines off and how profoundly quiet it was after a lifetime full of noise. That moment was in many ways the hardest but the most beautiful and peaceful. You could FEEL the peace descending as Bennie’s breath was leaving. It was awe-filled and full of light. No other way to describe it. Sometimes, it’s the smell of cleaning agents that reminds me of the lovely woman who cleaned Bennie’s room and told me wonderful stories about her own sons who had been in the NICU as preemies…one lived, the other didn’t and thereafter she always asked to be assigned to that part of the hospital so she could help in some small way. Her name was Rhonda. She was one of the best people I met while we were there and in her very unassuming way provided more comfort than she can ever know. Sometimes its the rushing sound of water that reminds me of the sound of the chest tube machines and standing in the shower at the Ronald McDonald House on the day we learned Bennie wouldn’t get better and trying to decide what we would do and walking in the rain one night after we were home being angry and not caring about the wet. It’s kind of amazing the amount of everyday sights, sounds, and noises that keep that time alive. In many ways, I love it. Because those were his moments and our moments together. The good, the bad, and the ugly. I treasure them all.
One of the things that my therapist suggested to me was that Sean and I should make a plan for things that may be triggers in terms of events/days/holidays. Talk it through…what will we do if “x” happens? Do we need to talk to our family and friends ahead of time to let them know? Do we need an “out” if things get too hard? This has helped a lot. It makes us understand where the other is in terms of their grief and it also makes us more comfortable in leaving or knowing it’s ok if we need to. We’ve been good about this overall. Then, last week, we were busy and life was flying by and we had our niece’s first birthday to attend. We got in the car, we drove, we arrived. We had the present. We ate the food, we took pictures, we sang, we watched her smash the cake…all the usual pieces. It was good, she was adorable as always, we were happy. And then, I was sad. Just overwhelmingly, heartbreakingly sad in a way I haven’t been for a while. Because I realized Bennie would not get to experience these things…so many firsts were taken away when he died. And even in all the joy, I was just devastated. I almost couldn’t hold it together. I had to walk away from the group for a little while. And then I felt guilty for bringing the weight of my grief to such a happy place. I know that, because she is only about 6 weeks older than Bennie, that this twinge will probably always exist when I look at her and interact with her. It reminds me of the time I spent with my sister at the hospital with him…when she looked at me, as a new mom of a two month old and said, “Oh, Amy, I had so many plans for them”…and we cried together at what was not to be. I am ok with that and want to make sure I don’t let it take over the love I have for her. But boy, there are moments when that is really quite hard. I’ll find my way there, eventually. Or, maybe I won’t. I don’t know. But either way, it’s alright.
On the way home, we were quiet and talked a bit about the need to slow down, to not be so overwhelmed with work that we forget about life. We’d promised that to each other in the midst of Bennie’s life…to live ours in a way that honors him. It is easy, though, to make yourself busy, to fill your days and hours so that you don’t have to face the hard parts. Sometimes, that is very necessary. But it’s also important to remember that the hard parts are important too. They are the bumps that make us appreciate the good. So, we’ll get back to noticing them and also let ourselves know that if we can’t figure out a way to handle them all, that’s ok too. That will allow us to focus on the growing bump that is keeping us on our toes already. She’s already distinctly her own person and what a gift that is…we wouldn’t want her to be any other way. I’m getting anxious to meet her.
We are expecting. A baby girl. A new life. In a few months. This is amazing. And joy filled. And beautiful. And terrifying. In the world of loss, there is a name for this person, this little being conceived after the death of a previous child. They are called “rainbow babies”. I came across this term early in the year when I first learned I was pregnant and instead of feeling the surety and innocence of pregnancy that I had with Bennie, I felt all kinds of conflicting emotions. Joy and fear. Love and loss. Peace and anxiety. All at once, jumbled in my head and my heart. The fear and anxiety took over often. It was too soon. I was still trying to figure out how to live with grief and figure out how to be a mom to a son we had lost. My body was tired. My heart was tired. My spirit…was tired. I went back to my therapist. I cried. I mourned. I felt enormous waves of guilt for my small burst of happiness. I pushed and tried to remain disconnected to this new child for fear that I would forget the connection with our angel baby. My mind spun with the what ifs…what if something happened again? What if I wasn’t capable of growing a person who could live? I was frozen with the thought of potential problems/threats/loss. I could not survive it. I simply could not. My heart knew this…my head was trying to fight it. I felt out of control and very lost. My physical response to this was sincere and heavy. I was extraordinarily sick…couldn’t eat, sore, sluggish. I had all the symptoms of the depression that had plagued me last fall but with the added bonus of an influx of hormones and a uterus trying to once again produce a person. It was exhausting.
At the same time, I wanted so very badly to be happy and joyful. I wanted to feel what I felt when I was pregnant with Bennie…that immediate connection, that instantaneous love, that bond of mother and child. But I couldn’t do it. I knew too much now. I knew that things don’t always turn out in the positive. I knew that appointments that should reassure you actually didn’t because everything the first time had gone so perfectly…until it didn’t. All the markers that should make me feel better really were just empty platitudes. Hearing the heartbeat….well, until week 16 this little gal wanted nothing of that…every visit we ended up in ultrasound because she would absolutely NOT let us hear her in the office. No way. Week 16 was the time period when the specialists suspected Bennie’s lung problems started, so that week may as well have been written off all together in terms of my ability to participate in life. She moved less and differently than Bennie, so that made me worried. I had such nausea and that made me worried. I didn’t have my bloodsugars in such tight control and that made me worried. When talking to my therapist I said that to me, this pregnancy felt clinical rather than maternal. Like I had to protect my heart in order to keep it safe from too much connecting, from too much love. Medical facts I could handle. Maternal love I could not. I became obsessed with reading about every potential we could face…what might happen? If I knew about it, it wouldn’t be as scary. At least that’s what my brain told me. I understand now, looking back, it was very much how I had to deal with Bennie’s life…learn, cram, try to understand all the equipment, all the treatments, all the tests. In my experience as a mother, so much of how I understood my child was through WebMD or asking my medically minded husband what the hell was going on. This is what I know. This is what I understand. This is how I can process the daily life growing of this new person, because if I let myself jump in with my whole heart, as I had with our son, I don’t think I could pick up the pieces this time. It would be too hard.
We had extra appointments at 20 weeks with specialists…they talked to us about genetics and spent long moments looking at ultrasounds. They shook their heads and said, well since we don’t understand what happened the first time we cannot tell it it couldn’t happen again…we can’t see lungs on ultrasound, but the blood flow looks good…we’ll see you back in 3 months and double check. A punch, a push in the gut because once again it was a reminder that we are not in control. This time, control seems paramount. It seems necessary, like breathing. I NEED to know things are going to be ok. I need it like I need air. The panic that rises if I let myself fully embrace the lack of control is debilitating and mind numbing. The strength of it overwhelms.
So very often I have thought of my grandmother, who lost a son to toxemia in the 1940s. He was her first born. He didn’t get the chance to live. She never even got to see him. My grandfather did. It was something she never recovered from. She was closed with her feelings…because, I think she just couldn’t let herself be that hurt again. She just couldn’t survive it. I completely understand that. I am sad for her, that she never realized that a few years later, she had a daughter (my mother) who could only fill her broken heart up…but instead, she forced the need for perfection and the need to fulfill the lives of 2 children onto one. That was hard. I think about the similarity of our stories and wish and hope that I can find my way past my fears and make sure that I don’t do that to my daughter. It was not that my mother was not loved…oh, she was loved immensely. But how do you have a living child and not think of the one who died? How do you make sure that you honor the lives, the joys, the individual talents, of both without letting the lost overshadow the living? It’s a hard question. I have no idea. I suppose like everything else, we’ll figure it out as we go, the best we can.
My husband is very calm about the whole thing…I told him one day, “I need you to freak out! I need to know that I am not alone in this crazy…this unsettled fear and worry! I need that.” And he said, “But Amy, we don’t get to decide. We just have to trust that it will be ok.” At that moment, I wanted to punch him. But I realize that it is a wonderful thing that he can be so full of faith that he can do that. I suppose I am envious of that in many ways. I also suppose that one of us needs to be calm so that we can make it through. I appreciate that he is…and hope that I can be more so as we get closer. But I’m not holding my breath. This is the way it works in grief, in life…everyone must deal with it in their own way, in their own time.
In the last months, I’ve allowed myself a little hope…a hope that she will be healthy and come home. A hope that my nights will be sleepless for joyful reasons instead of sorrow. A hope that the nursery will be full of noise and bright, life filled moments. It’s a harder hope to conjure this time. It has lots of dark spots surrounding it. But there is also the bright light of this little girls big brother, who shines all around. I have thought so much about this idea of a “rainbow baby”…this thought of beauty after a storm. I get the thought. But honestly, I really think for me the most alive I have felt since late September has been at night, when we have walked or sat outside looking up at the stars. The quiet, the peace, the calm of that made me come back to life. So, in many ways, this new little person to me feels like a starry night, the end of a busy day and the start of a peaceful evening. Not too bright, like the sun, but soft and new and beautiful. I hope as we go forward I can keep that peaceful and connected feeling…that those moments begin to overshadow the worry. It seems there are more of those moments than panic now. That is good. I don’t know if the connection, that brave, wholehearted pull, will ever be as carefree or easy as it was with Bennie. But I do think it will still be strong and full of grace. I can live with that. She can live with that. And we’ll keep taking those deep breaths that Bennie needs us to take for him. To fill up with life. To realize the gift of that life, every second of it. Rainbow or star, either way.
Over the past few weeks, I have been sorting and gathering. Tiny outfits. Bedding. Toys. Car seat covers. Bibs. Bottles. Books. Bags. Pumps. Blankets. All the things that make up the anticipated life of a little boy. It’s been an interesting part of this journey, the gathering. Because in this case, I know I am gathering not to use, but to give. It’s a natural thing, to give things you can no longer use to someone who can. This is good. And heartfilling. And makes room in your house, and maybe in your heart, for more of something…more possessions but at the best of times more love. Now, put a twist on it. What if those things were things you never got to use? What if they were all about anticipation and never about realization? What then? Because it sure feels like instead of filling your heart or your house up it makes for another empty space. You’ve grown comfortable with empty spaces…maybe not content, but comfortable. Comfortable with the understanding that most of these spaces can never be filled. You just have to learn to live with them. So isn’t it interesting that suddenly the space taken up by material things, which in many ways have absolutely no value to your heart, feels so very very important and hard to let go of? I know why. Because if you pack these things up and bring them outside your house it means that he’s never coming home. Which of course you understand in your head. But your heart is a different matter. I have talked to many grieving mothers. Each say that somehow the hope and joy and love that becomes attached to those things is what makes it hard to part with them. Some never have. Some did after a time. Some kept a few and gave the rest. Some sold them. Some threw them away. Some burned them. I can see the reasoning behind each of those actions. I don’t know what has gotten me to the point where I thought they needed to go…at least most of them. I kept a few tangible things, mostly things that were with us and with Bennie while he lived. There is an attachment there. A proof that yes, he lived and he used or had these things with him. That is important. So much of what we had for him was, like many new parents, overkill. Extra. Too much for someone so small who was to live in a small room in a small house. Those pieces were easy to sort because I knew that even if he had come home he would likely not have used them anyway. I deftly went through bins and bags and packed them up for dispersal. Nothing to it. I could do this. I would do this. Easy.
Then, there were those in between things…things we bought specifically for him, things that came from particularly special people in our (and his) lives. Things that were handmade and full of love. What about those things? Do we keep them all? If we don’t, then what? How do we decide? And really, after all the things we’ve had to decide (not one of which has been easy or simple), how can we decide MORE? It’s too much in lots of ways. Too hard because like every step of this journey, the longer we go around the sun the further we are from his life on earth. That’s a hard one to swallow. And the “stuff”, if kept, somehow keeps the anticipation of that life alive, even if he is not. Tricky. Like all of it. Heavy. Too much to take in. But, somehow, we must.
So, a bit more slowly you sort those things that are a bit more dear. In so many ways, like much of this, the process is harder than the end result. It’s harder to think about giving things away than it will probably be to do it. It’s harder to think about the first holidays without him than perhaps the actual day. It’s harder to think about how people might be around you than how they actually are…sometimes at least! There are exceptions to this of course. But for me, often the anticipation is worse than the action. Though, in this case, the action actually ends one part of the anticipation…that anticipation of life…so that can spin your head around a bit. Anyhow, this morning I woke up early. I made some calls. I found a place that could use the things I had to offer. I wrote a few cards for the recipients, telling them a little bit about my son and why I hope these things can help. I sat with my kitties on the sunny screen porch and ate some breakfast and listened to the birds and took in the flowers and plants. I loaded my car. I felt ready. And strong. And good. And I drove, first to the doctor and then to meet my sweet mother who had agreed to come with me on this part of the journey. We ate some lunch. We shopped a little. And then it was time to go. We drove to the shelter. We asked for a cart. We loaded it up. We brought it in. We got a tax receipt. It all seemed simple.
And then, I had to get out. I needed air. I couldn’t breathe. Because suddenly, the anticipation of that life was gone. In a concrete way. I went outside and cried, big gulping tears that were quickly absorbed in my mother’s shoulder. And she rubbed my back just like when I was young. And she listened to my grief and didn’t try to say it would be ok because of course it wouldn’t. And we stood in the sun, in front of a shelter, letting the sadness and loss wash over us together. It was hard. But in the end, it was good. We talked about wanting to understand a reason why we had to learn this now, in this life. We talked about a family in my hometown who was just starting this journey with the loss of a son who was 18 and on his way to college and the anticipation of a life not fully lived but from a different angle. And then, I wiped my tears away and took a deep breath and we drove to do some more shopping. Not because it was important, but because life moves on and so must we. And sometimes, even when we are 35, we all need our mothers.
After I got home, I thought about the day and how in the end it was healing in a way. To know that the little outfits, the nursery things, the “stuff” of Bennie’s life could be useful for another. That is good. That is happy. That makes me smile. He gave lots of love in his little life and wasn’t I lucky to receive it? That’s what’s important. That’s what matters. Time, no matter how short, can change things. Love, no matter how small the vessel, can make a difference. And sometimes, when you think you’ve got nothing left to give, that’s when it’s the most important to do it. It fills you up, even some of the empty spaces.
(For Sean, who is the very best of partners and helps me find peace among the chaos)
Ordering a gravestone should be easy.
Pick the color. Pick the words. Pick the size. Done. Wait for installation. However, of course, there is much that goes on to get you to that point. Like having to process the fact that you are purchasing a gravestone for a child. Your child. Who, even though you know it, is really not coming back. This heavy marker is proof. A memorial. A reminder. A hard, literal stone telling you he is dead. Yes, you understand that in your head. But your heart is a different matter all together. That cycle of grief, that ebbs and flows, suddenly rushes over you again, just like that day in the early fall when you had to let him go. It makes you cry. And ache. And think about the other steps you’ve been through already. In many ways, it is beautiful because really, when you are open to grief and allow yourself to be vulnerable, I think the very best parts of your soul are there as well. The whole-hearted love, the abandonment of propriety in showing emotion, the peace of that passing of a person from our world to another…all those emotions are pretty life altering and amazing even though they are hard. I was talking to my mom the other day and she said something about a text message on her phone that I’d sent after we’d disconnected Bennie from life support. It said something like, “Bennie is unhooked and it is beautiful.” Which seems an odd thing to say when you are holding your dying child. But I think it was…that’s what I was feeling at that moment. That he was finally free of pain and free of the struggles of this life, moving toward a place of peace. This process has made me understand that choosing his gravestone is perhaps that movement for me. The ability to embrace ALL the parts of his life and his death. The understanding that he really is at rest, at peace. He’s known it for a while now. I’m just catching up.
I’ve been thinking about sorting out Bennie’s room…clothes and toys and soft blankets and pictures…and potential. It’s been there, a safe, sometimes kind, sometimes challenging space for him to “live”. What I didn’t realize until we ordered the gravestone is that, in fact, he will always live around us. He doesn’t need a room for that. It’s very freeing to realize this…it allows me to sort and donate and feel good about the fact that his little life can help someone else who needs those things. Because, they are just things. I will keep a few, to help me remember on a physical level that he was here. Not that I will forget, but sometimes a bear or a blanket are good touchstones. But much of it can move on, ready for another little person who is new to the world. It’s a good thing. It makes my heart happy. I think these things can carry some of him along into the universe. A little kindness. A little love. We all need some of that, even when we are new. Maybe especially then. Love you buddy. To the moon and back.
Bennie's Blessings 