I wonder what he would have been doing. Would he really be in college with Zay somewhere? How tall would he be?
It is hard to describe the pain that accompanies the not knowing and the knowing that there is so much in life that he has missed out on and continues to miss out on.
He lived a full and exciting almost fifteen years. And he was well loved. That is why it hurts so much. Because he was well loved.
On his birthday we are going to attend a Walk to Remember, through the local Compassionate Friends group, that happens to fall on his birthday.
We will walk, talk, and release butterflies. Then we'll eat some pie and think about memories we have of Lev.
I had been working on some writing about Lev's death to help me process it more completely, explain it and time stamp it in my mind to help relieve some of the trauma.
Then I stopped writing for a while and now I finished it up, in a rough draft. Below is what I had been working on. Today seemed like a good day to add it to the blog.
Light a candle, or have a piece of pie for Lev.
Life 2.0 Having a Baby After the Death of a Child
The second of our two sons, Lev was an easy baby and a spirited child. His creativity stood out at a young age, as could get extremely involved in whatever he was doing and enjoyed playing complicated imaginary games. His unique spirit continued into adolescence. He always loved a chance to dress up, and as a teenager continued playing games on the computer and on the telephone. He and a close friend would talk for hours, creating whole worlds and wars that would continue for months. With another friend, they loved to have have battles with foam swords that they made themselves, Lev often dressing up for the events.
He was very adaptable and made friends quickly. During his childhood we moved to the beach in Puerto Rico and the rainforest in Costa Rica. Traveling together strengthened us as a family and he and his brother spent a lot of time together. Lev learned Spanish and loved playing outdoors with sticks, building forts or climbing trees. Once, in second grade he rode off to a friend's house on his bicycle and came back on a horse. "We traded," he explained. I didn't know he knew how to ride horses at the time, but he was very self-confident and the horse was nicely obedient.
He was a quick learner and good student, but he did not always like doing what the teacher wanted and sometimes struggled with deadlines, homework, and external expectations. He didn't particularly like chores or being told what to do in general, but he was also very generous and brought spare change to school to pay for a friend's lunches when he didn't have the money.
Lev was also one of mood extremes. He would be gleefully happy, with a sometimes maniacal laugh, and then soon after be highly frustrated or angry. As an elementary student, he would get so angry at gym class that he would hit a student or storm off the field. He wanted to be all powerful and good at everything and would get frustrated when he couldn't run as fast or jump as high as his imaginary self could. As a middle schooler he had learned to control his anger, but had a few rock throwing run-ins with a particular student. His middle school teacher wrote a story at the end of each school year, including all the students in his honors English class. He said he struggled where to put Lev in the story because he was such an interesting, humorous, engaging force in the classroom. In the end he had decided give Lev an important role that concluded the story by giving him the power of Levity.
By ninth grade Lev had managed to figure out school. His grades were good, he was in the debate club. He didn't get in trouble, and he had plans to go to college with one of his best friends. He was a funny, self-confident kid and he helped several of his friends with their school work and life plans. He had a strong group of other weird and funny friends.
Lev had always been a healthy child. He wasn't seriously involved in any particular sport, but he was active and rarely got sick. That was until sixth grade. In the spring when he happened to be playing baseball, he came down with juvenile, viral arthritis. He went to several specialists, including alternative medicine, and they were never really sure what it was. He was so sore he could hardly walk up stairs and only went to half days of school. The specialists thought it would go away on its own in three months, and it magically did. Whether it was time or the supplements he was on to balance his gut bacteria, he was just better.
And he remained better for three years. The doctors said that his deadly illness was unrelated, but we still wonder if there was a connection. It seems to me that his body, or his blood/brain barrier was weakened and left him susceptible. I wonder if we had brought him to more alternative medicine specialists (acupuncture, chiropractic, naturopaths) if he would have been healthier and not died. I more than wonder; I feel guilty, but we don't usually take children that appear to be healthy to lots of medical specialists.
Lev died of an illness, but it seems more like a traumatic accident since it happened so quickly. He was mildly sick for one evening, and horribly ill for only a few hours the next morning. "They" say bacterial meningitis can be that quick. Once the infection passes the blood/brain barrier there is no stopping it. If the first serious symptom is a seizure, it's already too late. I didn't recognize his steady, shallow breathing in the night as a seizure until it got worse. There was no chance to say goodbye, no time to realize what was happening before it was all over and the life that we had, our life 1.0 was over.
We were camping, the four of us, and having a great time as a family. Lev was almost fifteen and Jaal had just graduated from high school. We had been hiking near Jasper, in Canada, walking on glaciers, swimming in mountain fed lakes, and playing music by the campfire. The brothers were actually becoming real friends, and were happy in the lives and plans they had created for themselves. Then one evening, at a campground in Lake Louise, Lev said his legs felt sore. He felt like he had a bit of the chills, and thought he might be coming down with the flu. We talked about going to a hotel if he would be more comfortable, but he liked the tent and his sleeping bag, and he was comfortable where he was. He didn't eat much dinner that night, but before going to bed had some yogurt and graham crackers. We talked about how he felt and tried to gauge what to do. Sitting by the campfire, as his brother and father went off for a little bike ride to check out the campground, he said to me, "What if I die from this?" I replied, "People don't die from the flu, even if you do end up getting sick, we will take you to the doctor and you'll be fine." This conversation didn't seem that odd to me at the time. A few months prior we had sat on his bed and talked about death. He was into death metal (the band Metallica, particularly, and other heavier bands) and he said he often lay awake before going to bed thinking about death. We talked about it and I told him it was normal to wonder or even worry about it and if he ever wanted to bring a blanket down and sleep in our room or in the room downstairs next to ours he could. It seemed like a normal conversation to have with someone his age, so when he said that to me at the campfire, I didn't press him for more details about how he felt. I just tried to help him not worry and assured him that he'd be okay.
I'm not sure what he could have said or what symptoms would have led us to the emergency room, but we certainly weren't worried and it never crossed my mind he might be seriously ill. Lev curled up in his bag to go to sleep and said he was feeling better. He didn't have a rash; he didn't have a sore neck; he didn't have any symptoms that appeared unusual to us. All he had was sore legs and a feeling that he might be getting the flu. After he went to sleep I spent the evening planning a canoeing and hiking trip for the next day. Before we climbed into the tent next to him we put up the rain fly, and he woke up and said, "Stop making so much noise, I'm trying to sleep." I asked him how he was feeling and he said, "I'm fine, be quiet."
Sometime early the next morning he started talking in his sleep. He was taking part in an imaginary sword battle. I was next to him and I noticed he continued to sleep restlessly for a while. His breathing was consistent and shallow, and he sounded like he might be still sick. I am not a medical professional, and I now think he was having status seizures at that point. I didn't try to wake him, as I thought it was good he was sleeping. It wasn't until a while later, maybe an hour, maybe less, maybe more, that he started getting restless and making some noises. It was bothering his brother, so as the sun was coming up his brother went to sleep in the car. Lev started moving around more and grabbed my hand really hard. He held my thumb hard enough that I had a bruise for days. At the time I remember thinking that I should probably trade places in the tent with my husband because I definitely couldn't sleep through this and he was hurting my hand. Now I treasure that hand hold and those few minutes together before we realized we really had a problem on our hands. It was getting light out and Lev groaned and moved around. We got up and talked about what to do. We decided we should probably wake him up. I wish I had tried earlier, although I know it probably wouldn't have made a difference.
Then we found out we couldn't wake him. It never looked like a seizure, he was just breathing shallow and wouldn't wake. His not waking was obviously worrisome, but he looked good and was breathing clearly. We got into action but we weren't freaking out, just determined. We called 911. We were glad it worked, as we hadn't been using our phones and we were in a foreign country. My husband said that they were very calm on the phone when they heard the symptoms until they heard his age. Kids his age don't have febrile seizures. My husband at that point understood it was serious. Why we didn't yell and scream and wake up the whole campsite is beside me. We just didn't realize what was going on. As we waited for the paramedics, Lev peed himself. We knew it was more serious than we thought. We changed him and put him in a dry, double sleeping bag with me. The first responders came quickly and got him ready to go in the ambulance.
We were all efficient and calm, like parents that think the worst thing that could happen is that he would have diabetes, or an intense flu. I went in the ambulance with Lev while his dad, Tony, and brother, Jaal, quickly packed the campsite, shoving everything in the car. During the forty minute ride to the hospital in Banff his condition worsened dramatically. They checked him for diabetes, but then it soon became clear to them that it was more than that. I worried there might be a long or difficult recovery as this seemed pretty major, but it never crossed my mind he might die. Until he did, it truly never crossed my mind. I don't think I let it even enter. They called to a helicopter transfer to Calgary, so that it would be ready when we arrived. They were on the phone to the hospital, speaking to specialists, trying to decide what tests to do. Then he started losing fluid. It just kept coming out of his mouth. "It just keeps coming; we already filled the blah-blah-blah bag," I heard them say. As we entered the hospital he stopped breathing. They wheeled him in and let me follow. They gave me a chair in the room a few feet from him and did tests, got him breathing, and tried to figure out what was going on. The timing of it all is a blur. I just sat there, waiting for Tony and Jaal, trying to keep out of the doctor's way. I was sure they would save him. We were at the hospital and he was a healthy kid the day before, hiking on a glacier, playing in the woods.
Someone was giving me directions to the hospital in Calgary because they said I couldn't go in the helicopter with him; it was against policy. Then, time went by, and they said they needed to stabilize him before they could transport him. The doctor was on the phone with specialists the whole time, trying different things. At some point I called Tony to tell him to come straight back without checking in when they arrived. I didn't want to scare them and have them get in an accident but I wanted them to hurry. I didn't say much. Jaal was driving, as he was a very reliable, conscientious driver, and Tony was probably losing it. He was the most aware of the seriousness of the situation and was worried Lev would have permanent brain damage. While I had my phone out, I took a picture of Lev on the table, his little belly wiggling as they did CPR. I took the picture for him. I thought, "He's not going to believe this. He will be so proud of himself and how strong he is." On occasion I run into that photo in our digital photos. I think it stops my heart as my worlds collide.
Tony and Jaal arrived and Tony and I squeezed in the corner of the room as they continued to do CPR and a host of things that I don't remember. They were on the phone to the big hospital in Calgary the whole time, trying this and that, as I sat squeezed next to a grey filing cabinet. Jaal went in and out between the waiting room and the emergency room.
The doctors and paramedics realized all his organs were failing and there was nothing they could do. Lev died there in the hospital, never waking up. They let us stay with him in the room. Tony went to the waiting room and told Jaal that his brother had died, and Jaal said, "Really?" and came in to see him again. We were all in shock. I tried to climb on the table with him because I really wanted to lay down there on the little table with him, but it made fluid come out of this mouth. We said our "goodbyes" but he was gone already and we were in a daze. They gave us all a strong antibiotic pill and after a brief chat with a social worker at 10:30am we left the hospital a family of three. I remember thinking, "What, this little pill would stop it?"
The counselor lead us to a nearby hotel that accepted dogs, since ours was with us on our camping trip, and gave us the number of a funeral home in Calgary to contact. Entering the parking lot, Tony drove into a low roof and tore off our roof rack as we checked into the hotel. The actual checking into the hotel was the first of a series of difficult forms we had to fill out. "How many people in your room?" was staring at me on the page. I just stared at the paper for a while, thinking surely someone else should have done this for us. We were a family of four just a couple hours ago. But I paid and registered for our room. I wrote down Lev's name; how could I not? I wasn't accepting what happened. We went to our room and sat there, not knowing what to do.
At that point no one else knew what happened. It was our little secret. There was still time to roll back the clock. Maybe if we didn't tell anyone it would turn out to not be true. It seemed reversible, a big cosmic "oops." We had a dog and we were confused and obviously out of our minds. We went for a walk. We stopped on a bench and cried. We went into a little mini-mall food court got Jaal some food at a Subway and a smoothie for us to share. Keeping him fed and alive seemed important, although he was eighteen and none of us were really hungry. We found a place to walk along a river, with a peaceful trail and sat there until a maintenance man came by and started weed whacking around us. I'm not sure how we did all those things. Eventually we went back to the room and decided we had to make some phone calls. This was real and it wasn't going away and other people needed to know.
I remember most of the calls. Sometimes I replay certain ones in the middle of the night. They were traumatic in their own rite. As my husband once said, "You take any little part of this, and it is the worst thing ever." One of us would be on the balcony on the phone crying and one of us in the room, meanwhile the dog cowered in the corner, trying to get under something, while Jaal stared at cars going around a track on the television screen.
Somehow we survived the day and slept as if we had been drugged. The next morning we had another worst ever experience - going to the funeral home and making decisions. I clearly remember standing outside, not wanting to go in and deal with it, not wanting to be in the situation we were in. I recall wailing, saying to Tony, "I don't want to be that person. I don't want to be that mom whose kid died. I can't be that person." Yet, we were, and the people at the funeral home were gracious and professional and helped us get through it as best they could.
It was mid-day. We were a twelve hour drive from home and we had to wait three or four days for the autopsy to be completed before we could leave with our son's remains. Jaal desperately wanted to go home. Perhaps being in a hotel room with his hysterical parents having phone calls so bad you can't really describe them, or trying to figure out how to occasionally get sustenance in our bodies without having to actually interact with anyone or have an empty seat at the table was a bit much. We were traveling, and we had a dog and an eighteen year old that needed to be cared for. And, our son really wanted to go home. So, he drove us home and I flew back a couple days later with my mom to "deal with" the viewing, cremation, and carrying his ashes through airport security.
The drive was our time for sitting shiva, or private mourning. Although we were both raised Jewish we weren't very familiar with the details of sitting shiva and we were not religious and certainly didn't want to deal with anything new. So, while we didn't plan it that way, having the two day drive ahead of us, just the three of us, was probably a good thing. It gave us time to be in our misery and shock without having to deal with anyone else's needs.
We made a pact that we wouldn't cry while Jaal was driving, but we would stop at every rest area - and there were plenty - so we could go off our separate ways and wail. Then we would get back in the car, listening to a very limited range of not sad, not happy music, and drive home. We had to stop one night at a hotel. I recall waking up in the middle of the night disoriented, going into the bathroom to cry into a wadded up towel, trying unsuccessfully not to wake up Tony and Jaal. I have been blessed by a wondrous ability to sleep, and I think it saved me on most nights.
Arriving home was devastating. Friends were there when we arrived; they unpacked our car and bore witness to our misery. I remember not wanting to go in the house where Lev wouldn't be, and I collapsed on the stoop outside. Then it all started, dealing with people, family visiting, planning for a memorial, when I just wanted to hide in a hole and cry. Most people in our culture don't know what to say or do when someone has suffered a tragedy and is grieving, and I didn't know what to say or do either. We just dealt, somehow, falling into an abyss that we would slowly crawl out of during the next few years.
Two days later, with my mom, who had flown in from across the county, I headed back up to Canada and flew to Calgary to do what no parent ever wants to do. We realized that good friends of ours happened to be in Calgary visiting their parents, so I had a close friend to handle logistics for us, and to share in one of the worst, most intimate experiences of our lives. Together we went to the funeral home, and spent time in a room with my son in a casket. Again I wanted to climb in with him but couldn't; all I could do was to collapse on a chair cross the room for a while. I felt like I was stuck in a hole and then eventually thinking, "Okay, what am I supposed to do? What is the next step? What is expected of me?" I could have stayed there forever, wishing for life to stand still, reverse itself, and not continue careening down this awful path it had taken. Instead, I pulled it together, and accompanied him downstairs for the cremation and the wait to carry his ashes home. It was as awful, or more awful, than most people can imagine. And, although I'm glad that I was there and that my mother and friend were there with me, it has added to the images that torment me at times. Because my husband stayed home with our older son, I took some photos of Lev in the casket, and in the actual cremation chamber.
Although I wonder if I should have taken them, sometimes I think those photos are important because they remind me that this is real; that it is permanent. On the other hand, they also embed the horrific moment in my memory, like taking a photo of the scene of an accident, not allowing it to fade with time. Not letting the good memories fade is important, but I'm not so sure about the traumatic ones. They do all connect me with Lev, with being his mom. I want to remember. It hurts because I love him and I miss him, and I embrace the pain. I wonder sometimes if I were given the choice of erasing all memories of Lev and all pain, would I prefer that to having the loving memories and enduring the pain? At this point in my grief, I must admit I'm not actually sure what I would choose. When it hurts this much, would you still choose to go through it for the joy and purpose they brought in their life? I think I will answer this question differently as time goes on.
The days and weeks and months went on. In the beginning just getting through each day was a tremendous accomplishment. I wrote a few daily tasks on a sticky note and put it on our bathroom mirror, so that I would remember: brush teeth, shower, drink water, eat. Other than that I would sit outside and cry or read books about grief, write, or just stare into space. The weather was beautiful, the sun seeming to mock us in our grief. After six weeks, I went back to work part time and three months after his brother's death, our older son went off to college. Luckily he was only a few hours away and he visited frequently, always answered text messages promptly so I didn't have a panic attack, and generally was as caring and compassionate of a son as you could hope for. Nonetheless, we were alone in a five bedroom house in a life we built and house we chose for them. We decided to only eat things that the kids didn't like - zucchini and eggplant with tofu for us and to go for walks often. Tony and I decided that if one of us wanted to do something, anything, the other person would do it. If one of us was hungry, we would eat. If one of us wanted to go for a hike, we would go. One of us was usually so zapped of energy they didn't want to do anything, but the other one would get us up and moving. Just keep going. We joined grief groups, read grief books, and went to counseling. We walked. And stopped, and cried. And walked again. We brushed our teeth and drank water and we survived. We survived the first few months, and the first year's holidays. We survived the autopsy report and the revised autopsy report that still left questions unanswered about what bacteria killed him.
We shortened our work days for a few months, but then we found it easier to distract ourselves with working. My husband stayed in his band and played music. We traveled together to his gigs, as I couldn't be left alone without sinking into endless despair, and we tried to make our older son's visits home as pleasant as they could be so that he would keep coming back. I don't think we laughed and we didn't smile much, but we held it together and we faked it at work. We did the best we could; time passed and our younger son still didn't return. We discovered there was no right way to do this; no way that would bring him back.
Somewhere in the middle of all the grief Tony still wanted to have sex. Perhaps looking for some closeness or pleasure in all the awfulness. Since we had a pact to say yes to any activity, we did. Not often, but we did. We would have sex and then I would cry and cry and cry. And somewhere in there he came up with the idea that we should have another baby. We weren't done being parents; we didn't know what to do with the rest of our lives, lives that seemed so empty and purposeless; and I was still of reproductive age.
The idea hadn't occurred to me since I was a mess, Tony had a vasectomy fourteen years prior, and before losing Lev he had innocently been looking forward to the "empty nest." It's hard to imagine that now, but we had our kids young. I would still be in my early forties and Tony under fifty when our boys would go to college. We imagined ourselves enjoying the next stage of our lives as our boys flourished in theirs - getting a tandem bicycle, hiking the Pacific Crest Trail. But, our lives were forever changed, and I loved having kids. This was our chance to have the grandchild that Lev would never have. I always wanted to be a grandma. It was a chance to bring some happiness and purpose into our lives. We knew it wouldn't erase the grief; we knew we would still miss our younger son just as much; but we also knew that we wouldn't have this vast emptiness in front of us if we brought a baby into our family. And, so we did.
It wasn't easy. But we set aside some funds, and began the process. First, a vasectomy reversal that wasn't fully successful and then on to in-vitro fertilization. It was successful our first attempt, which is what we were financially and emotionally ready to invest. A little under two years after Lev died we brought his little sister into the world. Her middle name is Sunshine, and she has lived up to her name. It hasn't been easy and she hasn't cured our grief. But, she makes us smile and gives us purpose. We feel fortunate to have her in our lives, although we don't like the path we had to take to get here.
Throughout the last few years I have been surprised at how few resources there are for people in our situation. I read many grief books and looked for resources for parents having babies after the death of a child. The resources I found were for moms starting over after the death of their infant or after a pregnancy loss. While there were some similarities in our emotions, losing an older child is a more complex loss. Maybe we are fortunate that we had more years with him; I've learned not to judge one loss as easier or worse than another, but the resources available didn't seem to meet my needs. I set out to share our story and write my reflections, but found that writing was usually too painful.
Pregnancy
Trying to get pregnant was stressful, as it is for all infertile couples. Ours was compounded by our grief, but in some ways we were less stressed than other women dealing with infertility. We had perspective. We knew it might not work, but we weren't completely sure having another child was a wise idea, even though we were sure we wanted to try. We knew that we wouldn't really be able to make a "wise" decision for five to ten years, and we couldn't wait that long. I really wanted to be pregnant, but I was so consumed by grief the actual fertility process wasn't that stressful. I went to a fertility yoga workshop and practiced yoga and meditation daily. We were fortunate and in-vitro worked the first time. I was pregnant and we were on our way. Relief, excitement, and a bit of fear were our daily companions.
Once I started to "show" I had to learn to deal with how public pregnancy was. People would see me, alone with my belly, and naively ask, "Is this your first?" Such a simple question raised such uncomfortable grief. I could just lie and say, "Yes." and get some stupid advice, "like enjoy your freedom while it lasts." Or I could say it's my third, and endure the follow up question, "How old are your other kids?" It's surprising how comfortable people feel asking questions about a pregnant woman, and how intrusive those questions actually are. Personally, I didn't actually mind the questions too much, but it was always a juggling act to figure out how to answer based on if you would see the person again, and your relationship. It makes the questioner feel awkward, but it's not like I have forgotten our son or our situation for a second, so it didn't bother me, I just felt badly for them.
The questions continue as she gets older. "Does she have any siblings? How old are they?" are common ones. I have become more comfortable answering the question. It comes faster, whether to lie, leave out some facts, or just come up with a succinct answer to that very difficult question. I have gotten better at saying, "She is my third, but our second son died a few years ago of meningitis as a teenager." How quickly that sentence comes out, yet how many months, and now years, of pain accompany it. Sometimes I say I have an older son who is 22 years old, and leave it at that, or I add that we "lost a child" a few years ago and decided to have another. Such a simple answer for a complicated situation.
While I was pregnant I was concerned about how my grief might impact our growing fetus. I would try to control my sobbing, afraid I would somehow dislodge the fetus with my hormones. But, holding it in can just create more tension, and it builds and has to be let out. So, I would find myself curled up on the ground, crying and crying and then stop and do some deep breathing. Meditation, deep breathing were helpful to restore calmness to my body. I did some research into the effects of depression on pregnancy and there were some impacts. Babies born of depressed moms tended to be more cranky their first year, but after a year the effects were not noticeable. I wondered about long term impact, and worried a little, but there was nothing I could do. As I researched it more, it seemed that grief and depression differed in their impact. Depression is more constant and grief has more ups and downs. Grief can be very overwhelming and debilitating, but then it passes and balance returns. I think the grief is so deep, my mind and body couldn't handle being in there for too long. So, while crying might have flooded my body with sadness, it passed, and then I was just sad, with a normal hormonal balance. Grieving mindfully for me meant recognizing the grief, and then letting it flow on, trying not to be swallowed by it, but allowing it to come in and flow out. During the pregnancy I tried to not get consumed by grief, to control my sobbing, to maintain balance, letting the grief flow through. (At this point, we have the happiest baby I've met, so it seems to have not impacted her. She may be the most loved, most precious being around.)
Post-partum depression or grief
After her birth, you would think I would have been happy, overjoyed to have a healthy, normal baby. Someone to love and hold and cuddle with twenty-four hours a day. I did feel so thankful and overwhelmed with love at times. But I also found myself depressed, with my grief looking a lot like post-partum depression for several months. At a time when I felt like I should be so happy, I was also overwhelmed with sadness. Maybe it was that the grief that I had held in due to fear of it impacting the baby was allowed out. Or perhaps I was just hormonally imbalanced. I was afraid of hurting Liana, of not being able to keep her alive, of crashing the car, of dropping her, of not being able to control the future. I was emotionally fragile and I missed Lev terribly. I decided to seek counseling again, and try to regain some balance. I still worry about her more than most parents and am frequently imagining scenarios in which she could die.
"When we lose someone we love, we are thrust into a world where we feel more vulnerable than ever before. Suddenly we must face the fact that there are absolutely no guarantees in life. Everything that once seemed sturdy is now fragile, particularly the people we love. These feelings can be incredibly overwhelming and oftentimes terrifying. It takes time and work to overcome them, to feel secure again in such a now-delicate world. "
So many other issues beyond post partum grief come up when raising a child after the death of one of their sibling.s
Dealing with depression is a component of living with grief. Some people use medication yet I am fortunate to have gotten by without it. There are some natural remedies for mood that I have tried at times and I think may have helped. Most importantly has been knowing when to seek professional support, keeping active, being in nature, and finding a support network.
It is natural to have "passive" suicidal urges. Life often doesn't seem worth it. It seems hard to imagine suffering like this for another thirty or forty years, yet on the other hand there is obviously a lot of life left to live and people depending on us. It's passive suicide because it's not a desire to actually kill yourself, just an acceptance that if somehow you died that would be okay. It would be easier. But, suicide isn't an option because you have seen how much that hurts the survivors.
An emotion that is often equally strong or stronger is the fear that your surviving, or recently born, children will die. All parents have these fears, but none as strong as a parent that has lost a child. We know that we cannot actually insure that our child survives. We cannot be sure they will wake up tomorrow, yet alone survive into adulthood. It can lead to consistent imagery of awful things happening to them, worry, anger, and self doubt. Some people who have lost small children say that it gets better when the other children grow older than the one that died. But, that depends on the age of the child, circumstance, and personal situation. Dealing with fear, which can cause anxiety, is something that impacts parents differently. I find that it comes and goes, and I have used some yoga and meditation strategies to help calm the anxiety. Luckily, our daughter has been very healthy. Every time she has the most minor of illnesses, or sticks a whole cherry tomato in her mouth, we are concerned that she will die. Since our son Lev's death was so abnormal and his symptoms were so minor it is hard to know if a slight fever or a sore tummy means that they won't wake up in the morning. Knowing that you might be over-reacting, and yet not hesitating to call the doctor is a balance that can be difficult to achieve at times.
Building a support network of grieving parents, new parents with kids your age, and friends and relatives to support you in the next decade is essential. I was fortunate to find a supportive new parent network, as well as a local grief group, and to have our friends continue to support us. Some friends really stepped forward to visit and babysit and ask the hard questions that allow us to keep talking about Lev.
I could write a lot about preserving a marriage through grief, and strategies for supporting surviving siblings, but I believe there are books and articles to address those topics. Supporting one another, accepting where each person is in their dealing with their grief, and making life still enjoyable for both your spouse and surviving children is no small task. Planning how to deal with holidays, anniversaries and traditions is one intentional way of listening to each other's needs and coming up with strategies to grieve together and support one another. Creating tributes, deciding what to do with the child's belongings, planning a memorial, journaling or scrap booking can bring a family closer and help you to understand one another.
Figuring out how to explain their sibling's life and death to the new child is another difficult decision. I chose to make a book about Lev and his life that included Liana's birth and how much joy she has brought our family. I am hoping that through this picture book Liana can grow up understanding that she had another brother and why he was so important to us, yet still enable her to feel as loved and supported. It helped me to know that I had a strategy when she starts asking the hard questions about Lev's life and about death.
No matter how much intentional grieving you can do - writing, attending grief groups, meditating, giving yourself time to think, keeping busy, and/or exercising I do I find I still circle back to anger, frustration, guilt, fear and pining. No matter how much I enjoy the happy moments with our little one, I still miss Lev terribly.
This new life is complex. It is extraordinary. It is not what we wished for, but it is here, and we go on. We embrace and appreciate what we have. Yet we wonder how we survive it. We have perspective. We know how special it is that we have two of our three children, and that we were able to have Liana and bring her light into all of our lives. As time goes on I am sometimes able to appreciate our time with Lev without always thinking "But." But we deserved more. But he deserved more.
He sure did. But this is what we get. And some people would think we were lucky. We are the simultaneously luckiest and unluckiest people I know.
This is an unedited version of this writing, finished quickly because tomorrow is Lev's birthday and although I started writing this months ago, the last part was rushed. I just needed to be done and get the ideas out there.
