One Year

April 30th, 2009 | by Matt |

I’ve been writing pieces of this post for months, actually. When I think about what to write – especially at times like the one year mark – I think it’s so easy to be wordy and trite. I’ve written many things and then erased them. The truth is that it’s hard to put everything into words, and sometimes if I did I think it would be difficult to read and hard for people to relate to. Maybe we resort to trite quotes and sayings of comfort because it helps us keep going when we know there is just nothing that could be said. Maybe it’s so hard to get a perspective on all the thoughts, feelings, and emotions that you feel after something like this that writing it down in a way that makes sense is quite a challenge. Just the process of thinking about it and writing things down has helped me this year, though, so I continue to give it a shot.

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.