It’s now been eight weeks since Kevin passed away. In some ways it feels like time has gone by so fast and it feels like yesterday, and in some ways it feels like it has been agonizingly long. As time goes by it changes from days to weeks, soon it will be months, years. I sometimes wonder how it will feel, what life will be like at different time periods from his death. I think I feel differently at eight weeks than I thought I would.
As we move further away from that day, the list of things to “take care of” has shrunk. We got his actual pacemaker in the mail weeks ago, sent to us by the good people at the University of Iowa Children’s Hospital at our request. It was much harder for me to see and hold it than I anticipated. This was the small little device that kept him alive for 2.5 years, and now it was in my hand - a sobering reminder of the fact that it no longer needed to do its job. It was what we felt under the left side of his belly every time we held him, but had never seen. It was hard to accept. But I’m glad we have it, because it was part of who he was.
As you probably know, we chose cremation rather than burial. It felt right to us, and we could always “keep him with us” rather than having to make trips to a cemetary. We picked up his ashes the week after the funeral, in a relatively small and unassuming box that gave no indication of the importance of its contents. We put it in his room, safe on a shelf, surrounded by other items of his, and that’s where it is now.
My dad offered to make a box for the remains, since woodworking is his area of expertise. He crafted an absolutely beautiful box where we will place the ashes and keep them with us in the house somewhere as our own private place to remember Kevin. We haven’t yet taken the box and the ashes into the funeral home to have them put everything in place. We’ll get to that at some point when we’re ready.
As Dawn said in her update, we reviewed the autopsy results with Kevin’s doctors a few weeks ago. It brought a sense of finality to the looming medical questions we had, even if it didn’t bring the sense of peace with everything that we might have wished for. Things happened the way they did, and there is no point in going back and questioning decisions or symptoms or warning signs. But there is also no way to prevent our minds from drifting back into those thoughts regularly. Which they do, randomly throughout different days.
I dream about Kevin regularly, but not every night. Sometimes it’s a great dream where I am playing with him or walking with him or just going about normal daily stuff with him around. These dreams are comforting to me because I get to feel what it’s like to be with him again, even for a short time. Of course, it’s bitter-sweet because I wake up and feel the sense of loss again. Unfortunately, I more often have dreams where I realize we’ve left him somewhere or he’s home alone and needs help, or that he’s in the hospital getting tests. You can’t control your dreams, I guess, and I wonder how long it will be until these fade.
I always wondered how parents could go so long without entering our changing their child’s room after they died. I’d heard of people waiting years, and even right after Kevin died I wondered why it would take so long. Well, it’s been almost 2 months and we haven’t touched a single thing in his room. We can go in there if we need to, but we just haven’t made any attempt to clean it up or move anything or get rid of anything. The bed is still unmade and the sheets are still on from the last time he slept there. Some of his toys and things are still sitting around from when we moved them in on the day he died. His toys are in bins downstairs, covered by a blanket for now. The framed pictures that we took off the walls for his visitation are not yet hung back up. I don’t think that it’s denial or that we’re too sad to mess with any of that stuff - more like there’s just no pressing need right now. We don’t want to make decisions about what to keep and what to get rid of. We don’t need to right now. When it feels like it’s time, we’ll take care of those things. I’ve gone into his room quite a few times to get something or put something away and found myself just sitting on his little firetruck bed that he loved so much, just how I did every night when I read him “Good Night Baby” or came in to sit by him when he woke up in the middle of the night. Sometimes I have to just sit there for a while.
We have plans to build a memorial garden in our backyard for Kevin. Somewhere that we can sit and relax and remember. The plan is to have a fountain with flowing water which will be relaxing to us. We have had some plans drawn up that we will use as a starting point, and probably work on it a little bit at a time over a few years. We will use the generous gifts from many people who loved Kevin to help build the garden, so a part of many people will be there with us.
Dawn’s dad Rich organized people and purchased a bench to be put at the Niabi Zoo in the petting zoo area, with Kevin’s name on it. Kevin loved animals and enjoyed going to the zoo, so this will be a special way to remember him. A number of family and friends visit the zoo regularly, and hopefully this will be a positive place for them to remember Kevin as well.
We just got back from our first family vacation a few days ago - our big trip to Hawaii with Nathan and Jeni and kids that we had been planning for 6 months. Overall it was great to get away and Emily had a great time. But as much as we wished that we could let everything go and just have fun, there were many moments every day where we thought of Kevin and missed him. Every time we were at the beach we thought of how much he would have loved it, playing in the water and the sand. When we were driving or when we went places it was just so obvious that our family is now only three people, and this was our family vacation. A few days were especially harder for Dawn, but overall we both able to enjoy all the good moments. More than anything we loved seeing Emily have so much fun at the beach, swim with turtles, snorkel and discover so many fish, and just have a good time. ( pics )
We left for vacation on Father’s day. I wondered if it would be especially hard this year, but it was okay. Of course I was aware that it was the first one without Kevin here, but I’m still so grateful to be a dad to Emily, and it was still a good day. I appreciated the people who thought of me on that day and let me know in some way. Sometimes that’s all we really need the most - acknowledgement that a particular day is tough or that some days can be harder than others, and understanding if we aren’t ourselves. Some days it’s hard to act “normal”.
I still have many different thoughts and memories of Kevin. Most are great and make me smile. Some make my stomach turn. While on vacation we heard a helicopter overhead and both Dawn and I were taken back to the painful moment when they took Kevin away on the helicopter to Iowa City. When I hear little kids scream sometimes it makes me think of the odd screams of pain and discomfort that Kevin made in the hospital and how he just wanted his IV out so bad. My mind often flashes back to the moment in the hospital hallway outside his room when we realized that he probably wasn’t going to make it, and the extreme sense of helplessness and sadness that overwhelmed me.
But along with those thoughts are also the good things. And there are so many. I think of Kevin many times an hour, every day.
I picture him watching his Baby Einstein videos. He had little names for each of them and we were always trying to figure out which one he wanted to watch. He loved carrying around the DVD cases themselves, and he would panic if he couldn’t find the puppy. He would often choose to take DVD cases with him as toys when we went somewhere. Not even the movie. Just the case. Once he left his puppy case at grandma and grandpa’s, so they actually scanned in the cover and I printed it out and work so we could put it into an empty case and he wouldn’t miss it. He looked at it like he knew something was different, but decided it was good enough.
Now that it’s summer I am always thinking of how much he loved to be outside. He was always asking to go out and go for a walk or ride or push something. He would pull one thing after another out of the garage to play with - strollers, scooters, vacuum attachments, wagons, etc. Our yard often looked like someone had littered every form of wheeled item possible. And when he was done with that he would just want to walk down the street and never turn around. He was always so good about looking for cars - when one would come he would stop completely and step up on to the curb and wait for it to pass. Then keep on walking like he had somewhere to be.
I remember a period where I would read him a bunch of books every night. We would cuddle up on the small couch and pick out a stack of his favorite books. I would read each of them at least once, sometimes twice or more, and he loved it. He knew the routine and would follow the same patterns every time. He would usually fall asleep, and sometimes Dawn would find us both passed out after reading for a half hour. I really miss that time with him. After a while that habit kind of faded and I would read him one or two books in his bed, but those nights on the couch were some of my favorite.
His little looks and quirks pop into my head all the time. He had a way of rolling his eyes that was so goofy. If I was trying to correct him or talk to him seriously he would roll his eyes like he wasn’t really paying attention. His smile was so big and genuine, and he laughed so often. I loved how he swung his arm when he walked, like he just had somewhere important to be. When I put him to bed he would lay on his back until he got really tired, then always turn to his side to fall asleep. But he would usually take a quick look back to make sure I was still sitting there. I of course miss his dancing. Looking back at pictures and video I realize how much of it is of him dancing like a maniac.
There is a mirror next to our fireplace. Every time Kevin took a bath I would wrap him up in a towel and we would peak into the mirror to “see the baby” and go “peek!” and he thought that was so funny. Every time I look at that mirror I remember his face looking back at me.
I could go on and on. I just miss him so, so much. Every day.
Finally, I wanted to share a few thoughts on what it feels like to us to be eight weeks down the road from Kevin’s death, because like I said above it’s sometimes surprising to us. If you are reading this it’s probably because you continue to care about Kevin, us, and our family, and may want to know how things are going. We are going to a therapist every two weeks to discuss our feelings and talk about things that are going on or feelings we are having. It’s been helpful, but even though we are several sessions in we feel like we are just starting to really come to some realizations. For the most part I think we are doing pretty well. Or as we say, as well as we could be. In the beginning we would have entire days where we did almost nothing and cried often. Now we still have bad days, but we can keep it together enough to go on with daily life. Sometimes people will make comments about how well we seem to be handling everything. I think we are both strong, but in reality people don’t see the times that we leave gatherings or situations and cry in the car or say how hard it was just to be there. There are mornings when it’s just hard to get out of bed and start the day. There are times when all we do is sit around and look at pictures of Kevin or watch videos or talk about memories. There are countless conversations we have about how we are feeling, what feels right, what feels wrong, how to handle people or situations, how to deal with different emotions, whether Emily is okay, and wondering when or if things will ever feel “better”.
What we need more than anything is understanding that it’s been eight weeks but every day is still difficult for us, and we still need some extra patience. Maybe we have a day where we don’t act like ourselves, or maybe we choose not to go somewhere or do something that we normally do. We need for that to be okay.
A few weeks ago we came across a post about do’s and don’ts to help a grieving parent. Some of the advice applies more to the short period after the death of the child, but we could really relate to a lot of what it says. In case anyone wants to read it, we’ve copied it here.
Thank you all for your continued support, thoughts, and kindness. And realizing that this is not a struggle measured in days or weeks, but months and years, and even a lifetime.