But what you learn over time is that the bull never leaves the china shop. It stands by the door, making you think it might go away. But it doesn’t. It stands there quietly through holidays, birthdays, vacations, and quiet moments at home. You’re always aware of its presence, even if it’s just standing there quietly. You come to realize that it’s never going to leave, and you just need to learn to live life with a bull in the corner. It lingers.

Every so often, it breaks things again. But not as often, and not as much. It settles down over time. Sometimes after it’s been a while since the last time it reared its head, you get anxious that it’s going to come out again. Sometimes it’s hard to behave normally because you fear the chaos again. Sometimes you know it’s coming. Sometimes you turn around and it’s in your face when you least expect it. You wish the bull would just go away, but it doesn’t.

After 2 years without Kevin, that’s how it feels to me. The chaos has subsided and life has continued in new and exciting ways. We have Ava, who is nearing her first birthday. As a family, we’ve experienced new things and grown in new ways. But the grief of losing Kevin is always with us, and we’re always aware of it and its effect on our life. Grief lingers.

Dawn and I were talking recently about how for a while after Kevin died, we could imagine things going back to normal if he were to suddenly be alive again. But now, it doesn’t feel that way. Life has changed enough that it’s harder to recognize the life before. Harder to relate to it. It’s hard to imagine him suddenly being back with us, because things are so different. I’m still very sad that the life with Kevin is gone and only a memory. That’s it’s become so distant already.

But our new life has Ava, and she has brought us so much joy. Now as she nears her first birthday, we see so many things in her that remind us of Kevin. Some of her habits, her looks, her little attitude. She is her own person, but there are glimmers of Kevin in there. When she does something that reminds me of him, it’s like a little flashback memory, and it brings a smile to my face. I also find myself saying some of the same things to her that I did to Kevin, or dancing with her, or playing with her in the same way. Sometimes my mind jumps back to the days when I was doing this with Kevin, and it all seems so familiar again. Sometimes I kind of catch myself by surprise by saying a phrase that I used to associate with him, and it feels weird to say it again.

I still find myself having quick flashes of memories from the day he died, and they still have a big effect on me. Like my stomach sinks and I have the feeling of dread that I did that day. I think back to the moment of telling Emily that her brother had died, and how heartbreaking that was. How the day itself was a nightmare, the days that followed were a blur, and the weeks that followed were numb. Music is always tied closely to memories for me, and there are a lot of songs that are either hard for me to listen to or that bring me back to that time. Hearing the first three notes of "Ordinary Miracle" is enough to put a lump in my throat. Other songs make me think of the days and weeks after he died. But I also have songs that make me remember some of the best times with him, and also the days when we were first in the hospital. I listen to them once in a while, because they bring him back to me in one way or another, and at least make it feel real again.

Life continues to go on day by day in a pretty normal way. But sometimes the memories are a bit stronger, or days come up that put the focus back on life with Kevin or the time around when he died. Those moments are when the feelings and emotions come back strongly and it all becomes real again. Grief lingers, and will for a long time to come.

We still think of Kevin daily and talk about him often. He’s still a part of our family, and we still love and miss the little guy so much.

Today was a beautiful day outside – temps in the 70’s and perfectly clear. I kept thinking of what a perfect day it would have been for a birthday party. Friends and family would come over, Rich would take some pictures of the kids outside in the leaves, cake, ice cream, etc. I wonder what kind of little boy he would be growing into. Would he still be kind of shy and goofy? Or would he be loud and the life of the party? When he died, life kind of split into "what could have been" and "what is", and his birthday lies on the "what could have been" path. As time goes on, that path grows farther and farther from the one we’re on now, and it’s hard to see it slip away. I find it hard to imagine Kevin at age four. He’s forever age 2 1/2 in my mind, even though life keeps going forward.

Unfortunately, Emily came down with strep throat this morning. So instead of doing something as a family outside in the warm weather, I spent most of the day camped out with her while Dawn took care of Ava to keep her away from her sick sister. Some parents who have lost children choose to do something symbolic on the child’s birthday like letting balloons go or putting flowers at their grave. That is fine, but those kinds of rituals aren’t really what feels right to me and Dawn. We tend to spend the "important" dates quietly remembering Kevin, looking at pictures and watching video. Sometimes it can feel overwhelming to have these dates come, because it feels like there is some expectation of things we should do or how we should feel or what we should say. It’s not always easy to know what to say or do and how much is too much or not enough. We just go with what we feel.

I find it hard that we obviously don’t have any new pictures or video to post and share. I still love Kevin and he’s still my son, and I find that at times I want to share how he affects my life. But I don’t have new pictures from school or him in this year’s Halloween costume. I can’t just say the same things and post the same pictures over and over, even though I want to acknowledge what a day means to me and that he is still special in my life.

We went to a second "grief retreat" a few weeks ago in Iowa City. It was similar to the last one, but we found this one a little easier to get through. There were new people there. People whose child had died since the spring retreat. Everything was fresh and new and raw to them in a way that was so familiar and sad. It was a strange feeling to be one of the parents whose child had died over a year ago. Time keeps marching on.

While we were up there, we also brought all the blankets that our family and friends had generously donated at Ava’s party a couple months ago. We included a note about Kevin’s life and where the blankets came from. They are always so appreciative at the PICU, and the blankets will go to good use. Hopefully some young kid there will have a smile on their face when they get a nice new special blanket.

We also finally did something with all of Kevin’s toys. Over the course of a few weekends, we sorted through them, put all the parts together, and made sure they were clean. We saved some of the toys that held the most memories for us, but really the things he played with most were DVD cases and other odd items. We saved a few toys for Ava, but we donated most of them to the Children’s Therapy Center. They will make use of them in their work or give them to families who can put them to good use. It’s comforting to us to know that his toys are now in the hands of other little boys who can enjoy them, rather than having them sit in tubs in our basement.

We’re fortunate to have family and friends who continue to think of us and remember Kevin, and we appreciate it when you keep us in your thoughts.

I wish he could have met her, because she is every bit as cute as he was. He probably would have loved being a big brother. He would have been almost 4 years old now, and I imagine him having big smiles and laughing at the new baby.

But the thing is, we wouldn’t have Ava with us had Kevin lived. We had decided to be done with having children and were happy with our girl and our boy. But after he died, we realized we couldn’t be parents to an only child. Our kids mean everything to us, and our lives are so much better and fuller because of them. So from the sadness of Kevin’s death came the joy of Ava’s life. When I look at her I sometimes think of Kevin, and how life can be unpredictable and not quite what I had in mind. It can send me back to changing diapers and sleepless nights after I thought those days were over.

Ava was born at the hospital where Kevin died (technically he died in Iowa City, but everything happened here) so it was another instance of happy and sad moments in our life overlapping. The same hospital was the place of the worst day of our life and one of our best. We couldn’t help but think of Kevin while we were at the hospital. He was in our thoughts a lot, and there were some sad moments along with the happiness of having a new daughter. As you can imagine, we were asked a lot how many other children we had, etc, and that can get awkward. Some of the emotions come from just knowing that this was a happy moment in our life, but one that existed only on an alternate path from what we thought we had.

The hospital stay was especially emotional because our room was overlooking the heli-pad, where Kevin was lifted by helicopter for Iowa City. When we were getting ready to leave the hospital, a helicopter was actually coming in. As we were walking out the door and I was going to get the car, the helicopter took off. It was loud and powerful and everyone around turned to watch it. I’ve found a few times since he died that the sound of helicopters is very uncomfortable for me, but I was overwhelmed in this moment. Here we were taking our new baby girl home from the hospital, surrounded by such a powerful reminder of the day Kevin was taken from us. I cried a little as the two conflicting emotions rushed over me.  The moment that they took off with Kevin in the whirlwind of noise, wind, and lights is still vivid in my memory. A powerful, surreal, overwhelmingly sad moment. Those feelings came back to me, and it hit me that we had two children leave this hospital out this door, one bound for our car to be taken home, and the other bound for the helicopter at the end of his life.

As the days and weeks tick forward with Ava, we are constantly reminded of Kevin. First of all, Ava is almost 4 weeks old and Kevin at that age would have still been 2 weeks away from even coming home from the hospital! The length of time we were in the hospital with him is put into perspective even more now, and we realize how terribly draining and difficult that time was — and how much we missed out on during those early weeks at home.

Seeing how healthy Ava is reminds us of how tricky and difficult it was to care for Kevin when he came home. Although diaper changes, feeding, and trying to work in some sleep is exhausting with any new baby, we haven’t been overwhelmed by caring for Ava. With Kevin, we had so many worries, so many medicines to give, tube feedings at night, constant puking, etc. Again, we realize in retrospect how difficult that time was. When I change Ava’s diaper or hold her, I still expect to see a pacemaker shape inside her abdomen, and it feels weird to be able to pick her up and not worry about that. I have told Dawn many times, “having a healthy baby is so easy!” But of course that’s just a matter of perspective.

Having a new baby brings up lots of memories. We often talk about how Ava looks, moves, and acts and how that compares to both Kevin and Emily. We look at pictures of her and we see Kevin. We are reminded of lots of little things that Kevin did, and memories come back. That’s really nice, to be able to remember moments with Kevin and keep him in our conversations and talk about how he was like his little sister. I’m sure we will continue to remember and compare, for the next two and a half years, at least.

We have pictures of Kevin around the house, and I have found myself in quiet moments whispering to Ava, “That’s your big brother Kevin. We’ll tell you about him some day. He would have loved you so much.” I know she doesn’t understand. Those moments are for me. I need to say those words, even though it’s hard to do without some tears.

How I feel and act now with Ava confirms to me that I have been profoundly changed by Kevin’s life and death. I am happy and grateful for every moment in a way that I can’t really describe. It’s not just words or a way that I hope to live, but something I feel deeply and genuinely, in a way that is very real. I don’t get frustrated or upset by changing diaper after diaper, or losing sleep. I am just so grateful for every moment. I feel like I can really give everything I have and love fully, without holding back. Kevin’s death didn’t teach us to love our children cautiously out of fear that we might lose them and experience that terrible pain. Instead, we know that the only moment we truly have is right now, and the only way to live is to throw yourself fully into loving someone and give it everything you have. Although we found that perspective by going through a terrible experience, we are so grateful to have this approach to life become so real for us and to experience it daily with a new baby girl. These are the kinds of positive things that we can find from coming through the death of Kevin, and hopefully that new perspective will help us love and raise our new baby girl in a way that allows us to appreciate every moment even more and love her with everything we have.

A few weeks ago we took on the inevitable task of cleaning out Kevin’s room. We knew it had to be done before the baby was born, but every time we thought about doing it we just procrastinated. I guess it’s one of those things that you don’t want to do until something really makes you do it. I suppose that’s why some people leave it undone for years.

It was a Sunday morning and Emily was at the Tacketts’ house, so it seemed like the right time. I had bought some new blue tubs to put things in, because we decided that we weren’t going to make hard decisions about what to keep and what not to. The plan was just to load up the tubs and put them away to deal with later, if and when we felt like it.

It was hard to do and there were many tears. Even though he still lives with us in our thoughts and memories, we were now taking away his room and removing his stuff. He has one less place in our house. He’ll never be "replaced", but I can’t help my mind feeling like that’s what we were doing. Time heals, but it also erases. The slow fade of Kevin from our life is a necessary process for us to go through, but at every little step it hurts again as my mind fights the change. If we gave into the fear of facing these feelings, and tried to hide from the sadness that comes with each step, then we could stay in the past and never let our life move on. We’ve found that when we face these hard times head-on, we are able to handle it better than we thought we could. As much as we want to hold on to his memory and keep him as part of our life, it’s inevitable that we’ll put away some of his things, maybe take down some pictures, perhaps move some toys from the basement to the garage.

We boxed everything up, carefully putting things away. We went through all the books in his bookshelf, putting away the ones that were special to him and that we read a lot. There’s a bunch of books that I just don’t think I can read to our baby girl. Those will stay Kevin’s. We emptied his closet and dresser, looking at the clothes as we went and remembering when he wore them. We put away some of the toys that were still in his room. We boxed up some things from the funeral that were still sitting in his room where they had been randomly dropped a year ago. I took apart his bed that he was so excited to have so long ago. Normally when you take apart a toddler bed it’s to put up a bigger one and you think back to when they were so little and wonder how they grew up so fast. I took his down thinking that I wish he had the chance to outgrow it. To me, when I put it together while he watched, it was a symbol of how big he had gotten and what a normal little boy he had become. To take it apart was to face again the fact that I didn’t get to see him grow into a bigger boy.

Once we had moved all the stuff out and the room was empty, the feeling of the room changed. It didn’t carry the heavy weight of so many emotions when we walked in. Once we had faced the feelings of actually cleaning things out, we felt better about it. It had to be done, and it was kind of a relief to be through it. Although it was his room, he didn’t play in there that often and in fact he often didn’t even sleep in there (we almost always caved in and let him sleep in our bed when he wanted to, something we are thankful for in retrospect). But it was still his room, and looking at it all empty was a stark reminder that he was gone.

When it came time to paint the room pink I had a hard time. I had spent so much time painting his room with fancy blue stripes. It was something I did for him, from dad to son. A blue striped room for my boy. Watching the pink go over it was like I was erasing that, even as I was creating a cute pink room for my baby girl.

There still hasn’t been a day that has gone by that I haven’t thought about Kevin. I’m sure at some point I will think back and realize that he hasn’t been on my mind for a few days, but that point hasn’t come yet. It’s been over a year, but I still think about him, dream about him, laugh at memories of him, and talk about him.

It’s been a couple of months, but I did want to say thank you to everyone who remembered us on the 1-year anniversary of Kevin’s death. The cards, emails, and comments were much appreciated. We spent the day doing normal things and just enjoying the day, with some people around us who brought us comfort and helped us relax. We are not really ceremonial or ritual kind of people, so we didn’t make a big deal or do something "symbolic" to mark the anniversary. We just enjoyed the day. We knew Kevin was on everyone’s mind, and that was enough. At night, when it was just us, we remembered Kevin quietly and in our own way.

With the one year mark in the past, I do feel like there is a change in how we feel about grieving Kevin’s death. It has kind of changed from being something that is in the forefront of our minds and something many around us are conscious of, to being something that is more personal and that we continue to deal with privately. We have appreciated the fact that people have kept us in their thoughts during our first year without Kevin, through the holidays and difficult moments. But everyone else’s life continues to move forward and we don’t expect Kevin to stay in peoples’ thoughts as often or as deeply as he is in ours. And that’s okay.

This summer, while I am on paternity leave after the birth of our daughter, I plan to finally get around to working on Kevin’s garden. We had plans to get things done last year, but I think we expected a little more of ourselves than was realistic. It just didn’t work out to put time into getting everything done. Now that time has passed and life has found a new normal, it feels like the right time to put some work into it. We will make it a little smaller than we first thought. Something we can do ourselves, which requires little maintenance, but will be meaningful to us. It will be nice to have that special place in our yard that will always remind us of him.

It was about 2am when the phone woke me up from my sleep. It was Dawn, and there was panic in her voice. “You need to get here as soon as possible. Something is wrong. I think Kevin just had a seizure.” There were other words said but I don’t remember them. I threw on some clothes as my mind became a train wreck of thoughts. Emily was confused and still half asleep. “Is everything okay?” “I think so, I just need to get there as soon as I can.” I really did think everything was going to be okay. I was preparing myself mentally for a trip to Iowa City and maybe an extended stay in the PICU. Maybe even some kind of heart surgery. It’s okay. We’ve been through this before.

It was the middle of the night and I knew Emily couldn’t come to the hospital with me. She had school, I thought. I even thought about who could get her off the bus if we were still in Iowa City with Kevin. I knocked quietly on the Tackett’s door. No answer. A little louder. No answer. I didn’t want to be rude and wake up the whole house. I didn’t understand yet that the situation warranted the loudest knock I could make. A little louder. Nathan came to the door. A few words exchanged, I don’t remember what, and I was off.

I’ve never driven through city streets so fast. I was doing 70mph on the one-ways through Moline. I started rehearsing what I would say to a cop if I was stopped. My boy has congenital heart disease and he’s in the hospital having serious problems. I need to get there ASAP. I wondered if they would believe me. Luckily I didn’t have to tell the story.

I was visibly shaking. My heart was pounding out of my chest. A thousand scenarios ran through my head at the same time. I know I called my parents on the way but I don’t remember making the call.

Entering the hospital, I got a few looks from staff as I ran as fast as I could to the elevators and to the floor where he was. Entering the pediatric unit was surreal. His was one of the first rooms on the right and there were already lots of people around. I’d seen this before. We spent 6 weeks in the PICU in Iowa City, and we were there plenty of times when other people had bad days. We even had some of those days ourselves. I wonder if that fact helped me walk in the door of the room. But this time was different.

I talked to Dawn and she filled me in on kind of what happened. They had just intubated him shortly before I got there. Not a good sign. He had some pain medicine and it had started to really kick in. I stood by his bed and looked into his eyes. He looked at me and it seemed like he knew his daddy was there. I hope he did.

There were doctors and nurses all around. I didn’t want to get in the way, but I didn’t want to leave him sit there. He had medicine to take away the pain and calm him down but he must have been scared. He was old enough to know something was wrong and he didn’t feel good. I cry as I type this at the thought of him being scared and wanting to go home and lay on the couch and watch Baby Einstein and go to sleep holding his favorite DVD case.

Hindsight is 20/20. Had I known he would die I would have stopped it all, pulled out all the wires and tubes, and held him. Comforted him. Looked into his eyes and felt him in my arms one last time. Be there with him as his battle ended. Let him lay in a soft lap holding his toys without his hand strapped into an IV. I wish so bad that I could have seen him one last time before he was on his bed and surrounded by doctors trying to save his life. I can’t get the image out of my head, his last moments of looking into my eyes. I touched his hands, I told him that I loved him, that everything was going to be alright.

We sat out in the hallway while our boy was fighting for his life in his room. New doctors came in. People asked if we were okay. We listened in a panic, trying to hear anything that might let us know what was happening, if he was going to be okay. Blood pressure readings, pulse rates, blood sugar levels. More nurses arriving.

I don’t even remember exactly how everything progressed. At one point we were told that they were just trying to stabilize him so they could transport him to Iowa City. A couple times it seemed like they were almost ready to go. Good. If he’s stable enough to go to Iowa City, then that’s a good thing.

Wait.

What does it mean when he’s coding? Did they just say that blood pressure was dropping? Lost a pulse? What’s happening? The shaking starts. I can’t control it. I look around and it’s obvious that this isn’t going well. This is not what it looks like when things are improving.

One of his pediatricians comes out. “Kevin is very very sick.” Then some other words I can’t remember. They don’t come out and talk like this unless they expect the worst. Oh my god. OH MY GOD.

Dawn and I are sitting next to each other staring, crying, shaking. He can’t die. No. This can’t be happening. He can’t die. No.

Lost the heartbeat. A call for the defribulator. You don’t have to watch E.R. much to know that’s not good. This can’t be happening.

Wait, they have a heartbeat? He has his own pulse again? What a cruel moment of false hope. Maybe things will be okay. I swear, even if he has to have operations and we’re in Iowa City for 6 months, that’s okay. We’ll take it. Please let this be the scare of our life. Please tell me we’re going to look back at this and see how close we came to losing him, and appreciate having him all the more. Tell me that he’s going to be okay.

Things weren’t going to be okay. I don’t remember what all happened. A couple times when we breathed a sigh of relief and thought he might be out of the woods. More numbers and stats. Coding. People running around. Charge! Clear! Thump. You don’t want to hear that when they are doing it to your baby boy. It’s a horrible, horrible sound.

The life flight team had arrived from Iowa City to take him by helicopter. They just needed him stable enough to make the flight. There was a really bad storm coming in our direction. They couldn’t wait long. Please don’t let them leave without him. That means all hope is gone. Please don’t tell me there is another person waiting for the chopper who has a better chance of survival. A couple times they are almost ready to leave. Leaving meant it was over. Don’t leave yet. Not yet.

I paced. No. No. No. He can’t die. This can’t be happening. This isn’t the way this is supposed to go. No. He can’t die. Kick the wall, as if that would do any good.

The doctor came out and asked if we have a church we would like to contact. Don’t ask me that. That’s what you ask when you know it’s over. Don’t ask me that. At some point I walk down the hall to a secluded corner to call Nathan and tell him that it doesn’t look good, and to take care of Emily for now. It’s not a call anyone wants to make to anyone.

The chopper team is on the radio. The storm is getting worse. They have to leave in 5 minutes. Get him ready to transport in 5 minutes or they’re leaving.

We go in to see him again. He doesn’t look into our eyes. We touch his hands and stroke his face, but he doesn’t respond. He was gone already. We knew it.

The room was crazy. People everywhere. Disconnecting of monitors and wires and tubes. Piling the machinery into his bed for transport. Calling off of stats and checklists of things to do. Someone starts using the bag for his breathing. It’s all manual. They’re keeping his body alive. I’m not sure if they thought there was still a chance at that point. I wasn’t allowing myself to think there was anymore. False hope is torture for the soul. We’d been numbed to it for 2.5 years. I couldn’t do it anymore. It was over.

In the tangled mess of people, noises everywhere, as they prepared to roll his bed out of the room and down the hall, we said our first goodbyes. God how I wish that moment could have been quiet and personal and loving. All I wanted to do was comfort my boy and I couldn’t. I wanted to create some short memory of a personal, private, loving goodbye and I couldn’t. It was cold and it was medical and I was surrounded by 8 or 10 of the best people in the world who tried to save my little boy’s life. This is not the way his life is supposed to end. We’d gone through so many scenarios in our heads. Different ways his life could go. This was not one of them.

It had been about 4 hours since I got to the hospital. I don’t even remember where all the time went. But it was the most miserable, helpless 4 hours of my life. I sat out in a hallway while my little boy died in front of me. It’s absolutely overwhelming.

We walked down the hall and into the elevator with him, holding his hand and touching his face as much as we could. Out the elevator and down the hall to the front door of the hospital. The helicopter was waiting. We said a few more goodbyes and then watched them load him up into the helicopter and fly away. All by himself. I hope he’s not scared. I hope he’s not in pain. I hope he doesn’t die mid-flight, all alone, without his mommy and daddy.

We stood on the corner of the parking lot and cried, hugged, and thanked the doctors for all their efforts. We needed to drive to Iowa City.

We’d made that drive so many times in the last couple years. This time Kristel was driving us, and we sat in the back seat. Silent. Stunned. Exhausted. In shock. Heartbroken. The storm had hit, and the conditions were so bad that it was almost undriveable. The loudest rain I think I’ve ever heard in my life.

Halfway to Iowa City we got a call on the cell phone. It was the doctors in Iowa City. Kevin had made it there safely, but they were basically keeping him alive until we got there. They had done all they could do. They didn’t want us to have false hope and be shocked when we got there. Not that we had any hope left in us anyway.

At the hospital. Up the elevator. Silent. A nurse greeted us outside the PICU and explained what happened and what we should expect when we walked in. The doors to the PICU were closed with a sign that said medical emergency or something. People were waiting in the family waiting area, probably asked to leave the PICU and wait there during this time, as we had done several times during Kevin’s initial stay. I knew exactly what the look was in their eyes – “God, I hope that’s never me.” I know the feeling well because I’d been in that exact place. I do hope it’s never them, because it sucks.

He was in the same room he was in when he got moved out of the PICU. You’d think I would remember the number or something since we stayed there 24/7 for a week or two, but I don’t. Nurses and doctors are around, all silent. Some avoid eye contact. Others give us a look of sympathy. Some we recognize from 2.5 years earlier. Some recognize us.

Doctors circled his bed as we entered the room. Faces we recognized. They told us how sorry they were and that they wished there was more they could do. They remembered Kevin from so long ago. He was special. It was personal for them too.

They cleared everything away and stopped the artificial breathing. They had pumped his breath by hand for 45 minutes, keeping his body alive until we could get there. Dawn sat in the rocking chair. The same one she had sat in so many days and slept in so many nights, refusing to leave his side until he got better. The place he took his first bottle feeding in her arms. The place we awkwardly held him when he was so little and hooked up to so many machines.

Now there were no machines.
No tubes.
No wires.

They laid him in Dawn’s lap and he took his final breaths. His body quit, and he was done fighting.

Our little boy was gone.

So it’s now been a year since Kevin died, and a lot of the last year was a blur. I didn’t realize it at the time, necessarily. But looking back, I’m not sure where all the time went. There’s a lot I don’t remember. Everything is kind of hazy.

I still miss him more than I can describe. Our house, our family, our life is always missing one person, and it’s always something I’m aware of. Even though we continue on and live as best we can, it always feels like we’re incomplete. Every time we get together with family or friends, every time we sit at the dinner table, every time we do things as a family, it still doesn’t feel right.

When I think of Kevin, I think of how goofy he was, and his silly looks he would give. He could roll his eyes and dismiss me with such sweetness that I never minded. I imagine his long hair hanging down almost to his eyes, and how I would run my hands through it as he slept. I remember reading him books every night before bed, usually on the couch with a stack of them that he picked. I remember the last alphabet book we got from the library, with the king on the K page that he was obsessed with and had to keep going back to to say “King?” I remember standing next to him while he sat on the lawn mower for long stretches at a time. I can close my eyes and imagine the last time we sat outside in the hammock and both fell asleep. I remember him walking down the street like he had somewhere to go, never wanting to stop where I told him to. I miss taking bike rides around the neighborhood with him in the back smiling, clapping, and saying “wheeeee!” around corners. I miss his dancing on the fireplace ledge with the other kids. I miss his hugs and hi-fives. I miss his beautiful blue eyes and his sweet smile. I miss his enthusiasm for coffee cups, cows, vacuums, and his frog boots. I wish I would still find little squiggles on random pages of note pads. I wish I could still hear him say “Daddy!” when I get home. I wish I could give him one more long hug and see him smile. I miss my boy.

This last year didn’t always go how I imagined it would. Obviously, having your child die is devastating in a way that only parents can understand, and to a degree that even parents probably can’t understand until it happens. I was a parent of a child with serious life-threatening heart problems, so the thought of Kevin dying was real to me. It was something I had thought about many times. But I still didn’t quite understand the impact it would have on me, my family, my life. The initial shock and grief is absolutely suffocating. But what about the weeks and months that follow? What does day #100 feel like after your child dies? What does a random Tuesday January 6th feel like? What do you think about? What do you talk about? How does it still affect you? These are things I hadn’t thought much about, and couldn’t really understand until it all happened.

I think of the initial loss as a huge, violent splash in an ocean. It makes big waves that explode out in every direction. The waves eventually settle, but small ripples continue to spread outwards for a long time. Life a year after Kevin died is a lot about the ripples.

Therapy continues – for me and Dawn, and also for Emily. Our sessions are not about us crying because we just can’t deal with the loss of our son. That ended long ago. Now therapy is all about the ripples. And it’s not so easy. Early on, things had easier answers. We had a few days to make funeral plans and then it was over. We had a while to grieve intensely and privately and then it was time for normal life to resume. We had to do things like picking up his ashes and dealing with life insurance and reading autopsy reports. Horrible things, but they were well-defined. Decisions seemed to have answers and things became resolved. But as time progressed, things become a little more complicated.

The thing is, grieving the loss of a child and dealing with it is not just about being tremendously sad about the death. It’s a complex combination of a bunch of things, all of which come together to make it really, really hard to figure life out and deal with it.

Life is hard enough as it is. Having one of your children ripped away from you completely throws your life out of whack. First, you’re just overwhelmingly sad. For a long time. More sad than you’ve ever been. It’s hard to go through every day just feeling so sad. And with that kind of sadness, you feel very vulnerable and easily hurt. Even little annoyances and difficulties get magnified a thousand times. You know you’re extra sensitive, but is now really the time to analyze yourself and see if you are handling everything in the best way? You’re already completely overwhelmed, and you just don’t have it in you to think about it. Life just gets messed up in complicated, unpredictable ways, and you’re not in the right frame of mind to even figure out how to make it better.

Relationships have been and continue to be difficult. I wish there were easy answers, but there just aren’t. People say and do things that are unexpected and make life more difficult when all we needed is for things to be easy. Some people have expectations on how we should behave or what is appropriate and feel they should tell us. Some find it difficult to know what to say or how to act. Some people fade away, some step up. Some think they know exactly what we need but get it wrong. Some seem to know what we need but maybe grow tired of giving it. All existing relationships are affected and tested, even if you don’t want it to be that way.

It’s kind of scary to hear about parents who had their child die and say that many relationships and friendships did not survive. As if losing your child isn’t enough, then you have to deal with relationships being re-defined and maybe drifting apart. It’s so common to hear from other parents who say they just don’t have the same circle of friends as they did before their child died. Not by choice, but because that’s just the way it works out sometimes. It takes a lot of work to hold on to these relationships at a time when you have much bigger problems and feelings to deal with.

For sure, it has affected how we interact with people too. I imagine a family member or friend losing their young child, and if I didn’t have the perspective I have now, I’m not sure how I would have acted. I can sympathize with people not knowing exactly what to do or say. I know that we have not always made sense. It’s hard to explain to someone who is not living in it. Sometimes things don’t make sense. You know that you feel changed inside, and you know that things are not exactly how they should be, but you just have no idea how they could be okay, or how to even get everything back into balance. There are so many thoughts and feelings that get brought up and tossed around that it takes a long time to even figure out where you are and what is out of whack. Sometimes you are so consumed with thoughts that no one knows about that you completely ignore something that would otherwise get your attention. But if you tried to keep all your thoughts and life in order like someone might normally do outside of this situation, you’d crumble under the weight of it all. You have to let some of it go. You have to not care and let people be upset or think that you’re not behaving how you should, because to worry about all that would be impossible.

People naturally want to know what they can do to help, but I found that what I or we most often needed most was hard to explain, hard to understand, and hard for people to give. I would just describe it just as delicate, non-judgmental, forgiving patience. When life is completely messed up and you don’t even know how to function very well – but you also know that you have to “fake it” for everyone around you and you have to continue being a dad and a husband and a son and a brother and a friend – all you really need is for people around you to say it’s okay. Mess up ten times. Fifty times.  500 times. Say something out of anger that may be misdirected, or may be amplified 100 times because of the stress. Be irrational. Break plans at random. Leave the room if you need to. Or leave the house. It’s okay. Because life is so messed up that you don’t expect me to act like I always have. Let things change wildly and then let me find my way back to you when it starts making sense. Be there, no matter what happens. Try not to give me more to think about than I already have. I know it’s asking for a lot. But I’m not sure if there is some magic solution. Maybe that’s why so many relationships just don’t make it through this.

Life after having a child die is a tightrope walk. It’s incredibly difficult just to stay upright and not fall. It’s a long distance to go, and you can’t even see the end when you start walking. No one can help you along the way. What you need the most is simply to know there is a net below you in case you fall.

I wish the death of a child came with an instruction book. But the reality is that we figure it out as we go, just like anyone else would, and just like everyone else figured out how to deal with their sense of loss of Kevin too.  Sometimes I’ve gotten the impression from people that they think they have it all figured out, and they can tell me how I should think, how I should act, and how I should handle situations. It must be clearer and easier from their perspective, because it’s hard as hell from where I stand.

The feeling of having Kevin in my daily life continues to fade, which continues to make me sad, but it does get easier to handle on a regular daily basis. I’ve been separated from the life we had for long enough that it doesn’t seem like the norm anymore. But I still think about him every single day. Memories come suddenly, almost like flashbacks. I either get a really nice, calming feeling come over me and I feel for a second that he is here again, or I get a brief moment of panic and sadness as I get a memory of the day he died or the funeral or something.

Sometimes just the idea of a child dying is too much to think about. If I really dwell on what all happened, it’s just such a sad thing. I stop and think, did all this really happen? Did I really have a little boy with so many heart problems, who died at age two and a half? When you live through it, it all just kind of happens and you can’t look at it from the outside. Once it’s all over and it’s no longer your daily life, you can look back and see it for what it was. And it’s kind of hard to think about. For as much as we talk about the positives of having Kevin with us, the three years of our life that we spent while pregnant and after he was born were tough in so many ways. I think we did a pretty good job of dealing with it all then, and I think we’ve done a pretty good job of dealing with his death, too. I think we’ve done okay.

In our recent grief support group, someone said something that rang true for me. She said that the things that make her sad have changed over time, and I see that now too. I realize a year later that I don’t know what Kevin would be like now. I’m sure he would be talking, but I don’t know what he would sound like or what he would be talking about. I don’t know what his favorite shows or movies might be, or what games he would like to play. I don’t know what I would buy him for his birthday later this year.  I’m even more disconnected from my boy than ever, and it’s only going to continue like that. That’s a new kind of sadness that has emerged over time.

I’ve been surprised that the “big events” have been sad, but less so than I had imagined. Christmas was a pretty difficult time, but other holidays, special dates, even his birthday – they often seem like just another day of missing him. It’s the everyday moments that tend to sneak up on me and are when I feel the most sad. When I see a dad hug his little boy on tv. When I see little boys running around outside, riding and pushing toys. When I see a toy in the store that Kevin had. Even just the random thoughts about the day he died and the enormous weight that I have felt on my shoulders for the last year. These are the moments that have been most difficult for me, and they come at unpredictable times. Sometimes driving alone at night is the hardest time for me, but I also think I need moments like that once in a while.

I still dream about him, but not as often. Recently I had a dream where I was holding him, but I also had the feeling that he had died. In the dream, I was trying to figure out how I could be sad that he died, yet I was holding him and seeing him walk around. I was so happy to have him with me, yet unable to explain how it could be possible because I was certain he had died. I woke up kind of confused and a little unsure of whether I felt comfort or sadness. Usually my dreams are simple, and I just get to hold him, talk to him, tuck him into bed, or walk down the street with him. I always seem to have the feeling that every moment is precious, and I just cherish being with him. I always have a sense in my dreams that I’m running out of time with him and I need to hang on to every moment. In a Miley Cyrus song that Emily loves, the lyrics go “In a dream you appeared, for a while you were here, So I keep sleeping, just to keep you with me.” I’ve often tried to go back to sleep after having a dream about Kevin just to be with him a bit longer. But it doesn’t work.

We still talk about Kevin quite a bit. Emily often mentions her memories of him when we see something that reminds her of him or we do something he would have liked. She often just quietly says “Daddy, I miss Kevvy”. I don’t always know what to say. Sometimes I just sit on her bed before she goes to sleep and we talk about memories of him. There seems to have been quite a delay in Emily’s reaction to him dying, I think. It took months before some of the real impact started to become clear. There are still new issues that come up, and we are learning more about how she feels, how it’s affected her, and how to best cope with it as we visit with her therapist every couple weeks. It’s been a year, but fresh things are still popping up to deal with. One of the terribly difficult things to deal with has been seeing my daughter that I love going through so much pain and sadness at such a young age, and not being able to do anything about it. That tears me up inside. In addition to dealing with our own sadness, we have needed to spend even more time trying to make sure Emily is okay.

It’s no wonder they say it takes so long to work through something like this. It’s not like everything confronts you on day one and you can knock things off the list one at a time until you’ve “dealt with” everything. Just when you feel like you’ve handled one part of the process, something entirely new pops up that you didn’t even see coming. Dawn has read from many other grieving parents who say that the second year is even harder than the first. How is that even possible? I understand better than I ever thought I would what they mean when they say grief is not linear. I’ve imagined it as this curve that goes from initial shock and slowly reduces with time until it’s just a faint memory. But that’s not how it is. It’s a slow curve followed by an unexpected uphill followed by a steep cliff and then a sudden mountain. I’ve never personally had someone say anything like “it’s been almost a year, aren’t you over this yet?” but I’ve read about parents who have had that said to them. How naïve these people must be. They can’t even comprehend how drawn-out, complicated, and exhausting this is. Sometimes I wonder if I’m wallowing in the drama by thinking things like that, but then I think – would I be going to therapy every two weeks and taking my daughter every two weeks if this still wasn’t real and sometimes overwhelming? Would I sit up for hours with Dawn and talk about things if this wasn’t still the biggest issue in our life? Would I still be thinking so much about Kevin, our coming child, our family, my life if I wasn’t still dealing with the worst thing to ever happen to me?

They say that more than half of couples who lose a child end up divorced. Peoples’ lives are ruined. Some are unable to function normally for years. Some find it impossible to enjoy holidays for a decade. People commit suicide after losing their children. I mean, this isn’t some little bump in life that you get over quickly and move on. It’s the most difficult thing I’ve ever dealt with, and hopefully ever will. I think we’ve done a pretty good job of getting through this. It hasn’t all gone perfectly, but I don’t think there was a path that wouldn’t leave scars on us or some of those around us. Even if a perfect path existed – one where everything was dealt with in the best way possible and ended up the best that could be – how could a person going through all those feelings and difficulties even be expected to figure out what that perfect path would be? Even someone in a perfect situation would have a hard time with that. But I think we’ve done pretty well. We’re strong, realistic people and no matter what others may think of our take on the world or how we deal with it, it’s gotten us this far.

I wonder what Emily will think some day when she looks back and remembers this time. How will she remember her parents? I hope someday when she has children and can really understand what she and her parents went through, that she will think of us and will be proud that we stayed together as a family, kept her life as on-track as it could possibly be, and continued to love her and each other. I hope that someday she will understand how much she meant to us and what a priority she was during this time. Because at some of the worst times, our love and concern for her is what made us wipe our tears, get out of bed, and go on with another day.

We’re continuing on with our family, and we’re excited for our little girl, but it really is hard. Our family has not gone the way either of us had imagined our lives would go, but we’ve always managed to make it work. Learning of Kevin’s problems early in the pregnancy was a huge blow, but we worked through it and caring for him just became part of our life. Not planned, not what we wished for, but what we got anyway. Fair enough. I don’t think we ever complained, because coming home with that little guy was the greatest feeling in the world, and we loved him with everything we had in us. We had always talked about the “what ifs” with Kevin’s health. What if he didn’t make it through childhood. What if he needed a heart transplant in his teens. What if he had serious problems in his twenties. Neither of us ever wanted an only child, but how do you plan a family around the chances of one of your children dying? Those are some of the hard questions that come up when you’ve been given a child with serious problems. But Kevin seemed to be okay. We really thought things were going to be alright, and he was going to be with us for a full life. So when he died, one of the difficult questions that inevitably came up is – are we going to have more children? Emily was now eight, and that’s quite a gap. We didn’t want to have an only child, but how could we have planned any differently? How do you even begin to decide to have another child after one has died? Would it feel like a “replacement”? Could you love them the same way? Are you even capable of the same kind of love anymore? Why even continue trying to hold on to this dream of a normal life with two kids and a white picket fence? It just doesn’t seem to be working out. Having a nine-year-old and a newborn was never our intent, but what choice did we have? I admit, I am a bit jealous when I see people who get married and have their kids just as planned, with just the right space between them, everyone healthy and as happy as the next family. My family didn’t work out that way, and it’s not always easy to deal with. What if I don’t have another son? It’s hard to have that and then have it taken away. If I never had a boy, that would be one thing. But to have a son and then lose him is tough. I love my family, I love my daughter, and I loved my son. But this is obviously not the way I would have planned it to go. And yet I wouldn’t change a thing if it meant that I wouldn’t have Dawn or Emily or that I would never have known Kevin.

It’s hard not to think of life before Kevin died as the time when “life was good”. I remember being really happy with life, in general. We had worries, but I was content for the most part. Life seemed good. Now nothing can seem as good anymore, and it’s hard to imagine enjoying life in the same way as I did back then. It’s not by choice, or that everything was perfect then but without any joy now. It’s just hard to know the feeling of life being so good and going so well, and not having that anymore. I enjoy life now, but I often feel that I have to just accept that I can’t be as happy as I was before. Life just can’t be that good anymore. Maybe that will change over time.

It still bothers me that Kevin was dying and we didn’t know it. I think of the things we did the weeks and months before May 2 of last year, and now I know that he was going into heart failure, and he was dying. Dawn knew something was wrong, but I tried to remain optimistic and say everything was fine. But she knew he had less energy, he got tired faster, and he didn’t seem like himself in the early months of 2008. She was so scared a lot of the time. I learned to trust her instincts, because she was almost always right about Kevin, so I started to get nervous, too. It was too scary to think about, that my child was showing signs of heart failure, yet how can you ignore it? Dawn was setting everything in motion, getting an appointment in Iowa City and having him checked out. We just didn’t have any idea how little time we had. I still have bad thoughts about the fact that here he was, starting to wind down, starting to end his struggle, and we saw it but just didn’t realize how severe it was. And there was nothing we could even do about it. I remember leaving the hospital the night before he died, and I thought to myself, what if he really is dying? I had had those thoughts before at different times and he always turned out to be okay. So I was trying to convince myself that this was the same thing again. But that night I did feel differently. It felt more real than ever. I still wonder if there was anything we could have done differently, or if there was some way to prevent this. I know it’s pointless to think about now, but I can’t help but question whether there was some other way.

I’ve struggled at times to not let Kevin’s death define me and my life. I feel like that’s what everyone thinks of when they see me, and sometimes I think of everything in terms of Kevin dying. It’s hard to let that go and think of things without that perspective. I don’t want to demand that people always treat me with care because they don’t want to say the wrong thing around me. I don’t want to make excuses for anything and say “well, you just could never understand because you have never had a child die.” I don’t want to be dramatic and talk as if I have some great wisdom that others lack, or that my experience is so much worse than anyone else’s. I imagine it could be easy to slip into that kind of thinking. I want people to remember Kevin and be supportive of us – and they have – but I don’t want his death to be the only thing people think about when they are around me. There have been quite a few times in the last year when finding that balance isn’t so easy.

I’ve found that I’ve changed in some ways over the last year. Hopefully for the better. Having dealt with a terrible experience, I feel like I have more compassion for others who are going through their own struggles. I feel like I have a better perspective on life and what really matters. I’ve let go of many concerns I had before because they just don’t matter to me anymore. I have limited patience for pettiness and people who feel like minor inconveniences are something to complain about and draw attention to. I am more comfortable with my beliefs and views on the world and feel less need to defend them. I have an increased desire to live healthy and to experience as much of life as possible. I take less for granted, and I appreciate more.

I sometimes find it hard that people don’t talk about Kevin. I imagine it is very hard to know what to say, if anything, and it’s better to say nothing than say the wrong thing. But as part of the grieving process, I’ve found it so comforting and helpful to just talk about him, or even talk about how he died and how it has changed our life. I love to smile and laugh with others while talking about memories of Kevin, and even cry from missing him. It is so much better to have that out in the open than to keep those feelings inside. Part of the grief support retreat that felt so good was just to talk about Kevin and tell his story to people who were willing to listen and not feel all self-conscious about it.

It’s taken some time to learn how to respond to casual questions about our family, how many kids we have, etc. It’s also been hard to teach Emily what to say to people who ask if she has any brothers or sisters. Simple questions shouldn’t be so hard! I’ve been introduced to people who never knew Kevin and asked the dreaded “how many kids do you have?” question. For quite a few months, it would send me into an internal panic. If I say I have just one, then I felt like I was denying Kevin and lessening his impact on my life. But if I say that I had a boy who died last year, that makes the other person very uncomfortable, and it often isn’t the right situation to bring that up. Now that we are expecting another girl the questions are even more uncomfortable and complicated to answer sometimes.

More than anything, I just miss my little boy. I loved him with everything in me, and I will never be the same without him. I would give everything I own just to spend another hour with him. To hold him, talk to him, play some games, maybe ride the tractor, and just look into his eyes. He was such a sweet boy and such a source of happiness for so many people.

I know all the pictures in this post have been seen before, but I don’t have any new ones so I like to re-post some of my favorites. He was such a cute little boy, and I like seeing his face.

Finally, I want to say thank you to all the family and friends that have gone through the last year with us. I’m sure we have leaned on you at times when you weren’t even sure if you could stand yourself. I’m sure that so many of you have experienced (and continue to experience) incredible sadness of your own, but you have put your own feelings aside so often in order to be there for us. One of the things that makes me happiest is to see the genuine love that you all had for Kevin, and to see that you share in the pain of him being gone only because he meant so much to you as well. When people have told us that they think we have been so strong through this, sometimes I feel like saying, “well, you should see our support crew.”  We couldn’t have made it this far without the love, patience, understanding, and friendship from all of you. Thank you.

We miss you, sweet boy. You are forever loved.

Emily was nervous. I think she thought she would have to talk about Kevin and it would be sad. The more I talked to her about it the more she got on board. She took her crinkled up photo of Kevin and his Little People cow that he loved so much. I thought it would be good for her to be around kids that had also had a sibling die. She could see that they were okay and in time she could be too.

On Saturday morning we headed to Iowa City. I was nervous. The tears were already welling up just thinking about what I would say. As we got closer I looked off to the left and on one of the exit ramps there was a truck pulling a giant (fake) cow on a trailer. It made me smile. When we entered the room it was quiet. We saw so many people who came willingly, but you know would give anything not to be there.

We split up into two groups, and we went to the one where I knew there was another heart family. I was good until the grandfather of the little boy with the heart defect started talking. The tears started coming, then a sob. I stepped out so I did not interrupt them. It was just really close to home. I came back a short time later and listened to the rest of the couples tell their stories. There were some that had older children die from cancer, a five year old died from a blood disorder, a 16 day old baby boy who never left the hospital, one tragedy after another. We each took turns telling our story and the story of our child who died. We also shared our special items – we brought pictures of Kevin and his book, Goodnight Baby. There were a lot of tears as everyone told of their sadness, but also smiles as the parents talked about the child they lost and the happy memories they have. It feels good for parents to talk about their children who are no longer with them.

We took a break for lunch and met back up with Emily. She was having such a good time. They painted flower pots and were going to plant forget-me-not seeds in them. She got to pick out a beanie baby as well. I was so glad that she was able to relax and have a good time with the other kids.

After lunch I got a chance to talk with the other heart mom in the group. Her son was actually in the hospital recovering from surgery when Kevin was life-flighted there. He died just a month after Kevin. She is also expecting a little girl later this summer. It was so nice to talk to her and go over our experiences.

At one o’clock we broke into different groups. One group for parents that had chronic terminal illnesses, and the other for those that lost their kids suddenly. I was torn as to which group we belonged to. I guess Kevin’s heart disease was technically terminal- I never thought of it that way though. I thought we had a good 10-15yrs of good health before we had any major health decisions to make. He was happy on Monday and dead on Friday. So in a way it was very sudden. Even though he had complex heart problems he was a happy and healthy little boy. We chose to go with the group that had lost children unexpectedly.

There were some new parents in the groups so we briefly went over our stories again. In this session we talked about the different aspects of grief that we all struggled with, including the problems we had with family, friends and the general public. It was nice to hear that I was not crazy that other moms had the same feelings and problems. We didn’t have to be afraid to admit some of the angry, bitter and jealous thoughts we have experienced. There was no judgment and no one telling us how we should act or feel. You could see it in everyone’s eyes that they understood what we were saying. It was an emotionally exhausting day, but I am so glad we went. I think it is great that the U of Iowa Children’s Hospital started this program. I think it will help so many parents.

Matt and I have wondered what we should do on May 2nd. We wondered if we should do something formal in remembrance of Kevin. After going back and forth we decided to have a quiet unplanned day at home. We had so many of those days with Kevin. No plans, just hanging around the house, playing outside and going with the flow. What better way to honor him than to spend the day how he would have. We will have a few friends and some family around and look forward to a calm, relaxing, peaceful day.

To be honest, I was afraid that if I posted my true thoughts and feelings over the past year I would be judged or committed- neither of which sound too appealing to me. I also wondered if anyone would want to read the ramblings of a grieving mother.

The past year has been difficult to say the least. Having to get up everyday and do what seems unimaginable to most parents can take its toll. Living without Kevin is something that I am surprised that I am able to do… and look so normal doing it.  The way I figure it, I had two options. I could lay in bed and watch Forensic Files reruns for the rest of my life or learn to live again. I chose the latter. I am still a mom and I have a responsibility to my daughter. I have to show her that we can recover from tragedy. I have to comfort her and tell her that it will be ok again when sometimes I wonder if it will. I can only hope that in time this will get easier.

Matt and I have been in therapy since Kevin died. We work on a lot of things, but mostly things that were there before Kevin died, but because of all the grief/stress they come to the forefront. It doesn’t seem fair that in addition to having a child die and just dealing with the raw sadness one must also deal with lingering issues that have been there the whole time. But that is just the way it is. We are doing well, we have our ups and downs, but we love each other, our life, and our kids.

I came across a saying that I thought fit perfectly. “Let go of the life we have planned in order to accept the life we have waiting for us.” While this is definitely easier said than done, I feel that this is what we truly need to do. Even though Kevin is gone, we still have a “life waiting for us” , we just have to be willing to accept it. I have to let go of the guilt associated with living again. Be ok with saying that I can learn from Kevin’s death and be a stronger person.

I wish I had something a little more inspirational to say. But basically some days just plain suck. Other days are ok. I even catch myself feeling somewhat normal again on occasion. I expect that in time the normal feeling will come more often and the sadness and grief will fade into something more manageable.

The following poem has helped me for years. I read it often when Kevin was a baby and I still find comfort in it.

Desiderata

Go placidly amid the noise and haste,
and remember what peace there may be in silence.
As far as possible without surrender
be on good terms with all persons.
Speak your truth quietly and clearly;
and listen to others,
even the dull and the ignorant;
they too have their story.

Avoid loud and aggressive persons,
they are vexations to the spirit.
If you compare yourself with others,
you may become vain and bitter;
for always there will be greater and lesser persons than yourself.
Enjoy your achievements as well as your plans.

Keep interested in your own career, however humble;
it is a real possession in the changing fortunes of time.
Exercise caution in your business affairs;
for the world is full of trickery.
But let this not blind you to what virtue there is;
many persons strive for high ideals;
and everywhere life is full of heroism.

Be yourself.
Especially, do not feign affection.
Neither be cynical about love;
for in the face of all aridity and disenchantment
it is as perennial as the grass.

Take kindly the counsel of the years,
gracefully surrendering the things of youth.
Nurture strength of spirit to shield you in sudden misfortune.
But do not distress yourself with dark imaginings.
Many fears are born of fatigue and loneliness.
Beyond a wholesome discipline,
be gentle with yourself.

You are a child of the universe,
no less than the trees and the stars;
you have a right to be here.
And whether or not it is clear to you,
no doubt the universe is unfolding as it should.

Therefore be at peace with God,
whatever you conceive Him to be,
and whatever your labors and aspirations,
in the noisy confusion of life keep peace with your soul.

With all its sham, drudgery, and broken dreams,
it is still a beautiful world.
Be cheerful.
Strive to be happy.

Max Ehrmann, Desiderata, Copyright 1952.

Lastly, I thought I would just post random thoughts that I have had over the past year.

Holidays are hard. It is very obvious that someone is missing.

I cry in the car on the way to work. I know exactly when I have to pull myself together in order to not be red faced when I get there.

I wonder if I will ever meet a soul as sweet as Kevin.

I will never forget the wail that Emily let out when we told her that Kevin died. No mother should ever have to hear her 8yr old in so much pain. I never ask “why me”, I often ask “why Emily.”

I can’t change anyone- I can only adjust how I react. You don’t want to know how much therapy it took for me to realize this.

I am learning to open up a bit more- not everyone is out to hurt me.

I accept that Matt can have a completely different reaction to the same situation and it doesn’t mean that he doesn’t support me.

I will never “get over this” or have “closure”, I will learn to make room aside the sadness to enjoy life.

I am not always emotionally stable- I am ok with that.

Humor (the inappropriate kind) is a great coping mechanism. So is having a glass (or two) of red wine after a long day – pre preggo,of course.

I understand why so many marriages can’t handle the death of a child. Luckily, I think Matt and I will be ok.

Boundaries are important.

I swear a lot more lately.

I have learned to quit apologizing or feeling bad about my beliefs, decisions, and the way I live my life.

I still see the beauty in life and am looking forward to meeting our baby girl.

I really wonder where I would be without the gentle, unconditional support, and guidance from my mom.

I dread cleaning out Kevin’s room, I cry just thinking about it.

I worry about Emily. She had her life redefined at age 8. I hope she will be ok.

I am very lucky that my husband is so stable. I wish he had more room to “not be ok” sometimes.

Kevin taught me so many things. I am learning to live the calm, peaceful, and simple life that he seemed to embrace.

We’ve found the last couple of months to be harder than we expected. All three of us have felt more sad and had more moments when we have memories that we don’t really know what to do with. We’ve all dreamt of him more often lately. Maybe it’s the fact that it’s coming up on one year since he died, or maybe it’s the fact that Spring is here and we’re starting to go outside more. My last memories were of him around this time, of course, so maybe that’s what makes it harder. Or maybe it’s just the fact that grief is not linear. It comes and goes seemingly at random, often without explanation.

Although it’s been almost a year since Kevin died, it’s still very fresh to us and even now new feelings and emotions and regrets and happy memories surprise us quite often. He comes up in conversation almost every day, and we still share memories and talk about things that remind us of him. It still feels like some days we’ll come around the corner and he will be here again. I guess I wasn’t prepared for how fresh it still feels almost a year later, and how much he still feels like he’s part of our life.

Emily has been having a harder time the last couple months especially. They say kids’ reactions to things like this are often delayed and will pop up later when you think things were much better, and maybe that’s part of what we’re seeing. With our new daughter coming in a few months, that raises lots of new questions and worries for Emily too, and sometimes it all comes pouring out. We’re still taking it day by day.

Throughout this last year, I’ve often looked back into our photos to see what we were doing with Kevin exactly one year earlier. Last year at this time I took some of the pictures below. I thought they were funny and cute, so I’m posting them.

Monday, January 12, 2009
Sand Castles
The last time I was at Emily’s therapist, she asked me to tell her a little more about Kevin. I showed her the picture that I carry in my wallet and described him to her. She asked about his personality compared to Emily’s, mine, and Dawn’s. I like it when people ask about him. Parents always love to talk about their kids. But nobody ever asks about a child who died.

The other day at a doctor visit for Dawn, there was a little boy in the waiting room. He must have been right around Kevin’s age when he died. He had little jeans and boots on, and kept looking at me and smiling and laughing from across the room. He walked up to us and peeked around the corner a bit and smiled really big. He reminded me of Kevin quite a bit, and it reminded me of how great it was to have him around. I wanted to pick him up and hug him, but I knew I couldn’t do that. I like moments like that. Everywhere I go I see the little 2 or 3 yr-old boys and I see Kevin. But sometimes little kids like this are just so much like him that it’s different. Comforting. Happy and sad.

It was the day that Dawn had bleeding and we were both a little worried and anxious. It almost felt like Kevin’s spirit was there with us, saying Mom, Dad – it’s going to be okay. Smile. Laugh.

I visualize grief as waves on the beach hitting a sand castle. At first the waves are strong. They tumble over the castle and wreck it’s structure. It’s turbulent and unpredictable. Then the waves draw back and there is a moment of calm. The castle is worn down, but still stands. The waves come and go, each time a little calmer and a little further apart, each time wearing the castle down a little more. Smoothing its edges. Pretty soon it’s mostly calm, but every so often the sea rises and slowly comes in to the beach, taking with it a little more sand from the castle and then retreating silently. I imagine this often.

My memories of life before continue to fade. Life with Kevin seems further and further away. The sand castle continues to be worn down a little at a time. Waves still come, but they are getting gentler. It’s hard to believe that one year is around the corner. I’m not sure where last summer went. Sometimes I think last summer we were playing with him, then I have to stop and think that that was actually two summers ago.

My mind can adjust to a different life and our new normal much faster than it can really comprehend everything, I think. It’s still sinking in, which is hard for me to believe. Life continues to chug along, but inside me there is still a part of my mind that is trying to catch up. I can feel it. It really feels like part of me was left behind last May. That part of me doesn’t continue on with life – it stayed with Kevin. The person I am today is broken. Missing a part. And at times I feel like I’m turning around and looking back for it, wondering if it’s going to catch up. I’m losing sight of it behind me.

I think my mind is starting to pick up leftover thoughts and process them now. The other day I had the thought that the last summer he was with us (only his second summer, actually), we had the backyard torn up with septic repairs. It made me sad that he didn’t have the whole yard to run around and play in. I’m sure he didn’t notice. But my brain is picking up pieces like that lately and deciding to process them.

We saw a whole bunch of outdoor summer cow stuff at Target the other day. Boots, umbrellas, folding chairs, watering cans, the whole bunch. We thought of how excited he would have been.

Emily was at Bald Eagle Days yesterday and got called up on stage. She told us they asked if she had any brothers or sisters, and she said she is going to. She’s pretty good at knowing what to say, I think, but it makes me sad for her that she has to have that moment of wondering how to answer a simple question. We talked to her about it and told her different ways she could handle situations like that. We wanted to make sure she knew that it was okay to always acknowledge her brother and talk about him, but to know which times and which words are most appropriate. We face it too, especially with Dawn being pregnant. Is this your first? Well, third, but…. Do you have any other children? Well, we have one daughter at home. You have a girl, so must want a boy so you have one of each! Yeah, I guess. It’s kind of more complicated than that.

. . .

I love the videos of Kevin walking down the mall. They make me smile every time.

He visited me in my dreams the other night. I held him. I miss my boy.

Monday, January 5, 2009
Iowa City
Going to Iowa City was strange. It was the first time we’d been up there since Kevin died. I think sometimes my brain isn’t ready to process everything, or doesn’t know how yet.

Iowa City still seems like Kevin’s place to me. It’s very familiar to me, from the drive into town to the drive past the Ronald McDonald house to the hospital itself. But every memory I have of it is tied to Kevin, and it’s hard to shift that into it being about a new baby.

It’s kind of like walking into your old high school again. Everything looks so familiar, but it seems like a lifetime ago when it all seemed relevant. My mind has a hard time wrapping a new context around this place that, to me, is Kevin’s. We weren’t there just a couple days, we were there almost 24/7 for 6 weeks. And many more visits after that. He died there. There are a lot of memories floating around that building for me.

We parked in the parking garage that was being built while we were first in the PICU. I remember looking out the window many days, just watching the construction crews work on it because there was nothing else to do. So when we were in the lot, I could picture where our room was from the outside of the building. That’s also the room where he died.

I don’t like the smell of the hospital. Smells have a way of transporting you back to a different time, and it’s hard to think of all the time we have spent at that hospital. And yet it was time when Kevin was still with us, too, so it’s also kind of nice. I can imagine going to pacemaker checkups, echoes, etc. We went right past the place where we took him for his vocal chord checkup back when we were still worrying about that. I can still imagine things going back to the way they were, him being with us, and life going on as if nothing happened. It seems like part of my brain put life on pause when he died, and part of it kept going. The part on pause is just sitting there waiting to start up again. It’s ready. Different memories bring it up and make me feel for a split second like that life can continue somehow. I wonder if that will always be there.

I told Dawn on the way up that we are way too good at this. We could go to an Iowa City checkup in our sleep. We know exactly how long it takes to get there, how to make sure Emily is taken care of, where to park, how to maneuver the parking garages, how to check in, which halls and elevators to take, etc, etc. It feels like second nature. Most people going up for a scan like we did today are probably scared or really uncertain about where to go and how it all works. We’re on automatic pilot. I bet there are a lot of people that way at the Iowa City hospital, actually.

Since we had many checkups with Kevin that obviously weren’t good news, our natural feeling is to expect something bad. It’s hard (impossible?) to get back to the place where you assume things are fine. It’s a strange feeling to go through an ultrasound like this and not see the look of dread on the tech’s face, or have to explain that we already know about all the things that are wrong. Things are okay. What? Everything looks fine. Are you sure? Really? Is this what a normal pregnancy feels like? Wow, it’s so nice!

We joke about weird things. That’s our style. I’m sure many people would think we’re mentally unstable if they heard us. They wouldn’t understand. They can’t relate. Maybe it relieves stress. Maybe it’s our way to cope. Maybe it’s just the view of the world we’ve grown to be comfortable with after 4 years of stress, medical overload, uncertainty, random bad news, and sometimes futile hope.

We laugh about things we could say or do to the doctors and nurses that would freak them out. Or ways we could act that would completely throw them off guard, because we know that everyone who sees us is surely made aware that we had a child die last year. We look around for “the room” and joke about telling them to take us there because we already know something is wrong. Maybe it’s our minds trying to prepare us just in case that were to happen. It actually kind of sucks to know how all that goes down. What people look like, where they take you, what they say and how they treat you when they have to give the worst news to an expecting couple. I kind of feel like we’ve been down a number of the “very bad roads” that one can possibly go down. What can they possibly do to defeat us now? We’re invincible, and yet as fragile as we’ve ever been.

My mind is still sorting through a lot of feelings. I can almost feel my brain chugging away at it sometimes, like it’s still trying to process and file everything that is still confusing. I have a lot of feelings about having a baby and still missing Kevin so badly. About having life contain both happiness and sadness at the same time. About how to separate my feelings about another child from any expectations, sadness, or unresolved feelings about Kevin. How to deal with it if it’s a girl and I never have another son. Or if it’s a boy and it’s obviously not Kevin. About how to make sense of a life that still doesn’t seem to make sense a lot of the time.

I’m glad christmas and new year’s are over. We had some good times, but it was pretty tough. I was definitely ready to get past it all and go on. With Dawn being so sick all the time and so tired, and with all the emotions and thoughts that we have in our heads, sometimes adding things like holidays in seems like a bit much. Things in life that may deserve our attention don’t necessarily get it or get crowded out because it’s just too hard to deal with everything at once. It takes a toll emotionally and mentally, and then that takes a toll physically. But you know, that’s life, take it in stride, keep going, make the best of it.

We’ll probably go back to Iowa City once more during this pregnancy. And to Dr. Pyevich’s office to check the baby’s heart. That will be another surreal experience. One day at a time.