(Matt) I have been writing some on my own, keeping track of some of my thoughts and feelings. I thought I would share some of it, especially the memories I have of Kevin.
Sunday was the last “official” day of summer. Obviously this summer was very different from last year because Kevin was not with us. We didn’t swim much. We didn’t have friends over as often - we didn’t have as many cookouts or random Monday-night pizza-ordering or fun nights in the pool house. We only went to the zoo a time or two. It’s such a contrast to a year ago when life was good and we were enjoying ourselves so much.
I cleaned out and organized the garage, to start getting things ready for fall/winter. It was hard because I sorted through a lot of Kevin’s things as I moved stuff around.
His red wagon still had a paper butterfly on the handle. We had gone to the Port Byron parade as part of the storytime group just 12 days before he died and he had so much fun. He had his coffee cup with him (of course) and got all sticky with a sucker. The bag from that day is still in the trunk of my car. I see it once in a while but I just don’t want to get rid of it yet.
His little green John Deere tractor was sitting there, with his John Deere keys on the seat. He loved riding that tractor. I would push him all around our driveway and the street, and he was just starting to understand that steering made him go in different directions.
I found his little bike helmet that he didn’t wear this summer.
Of course, his tricycle. I spent many hours pushing him around on that, trying to get him to remember to pick his feet up so they wouldn’t get caught under the wheels. He had just started to learn how the hand brake on the side worked. He thought it was silly to put the brake on all the time, and I of course exaggerated his stopping power, which made him laugh. I could just imagine him tearing around the turn-around on that little bike, if only he had more time to master the concept of peddling.
The pull-behind bike trailer was folded up in the corner. He took many rides in that and loved it.
I didn’t get rid of anything. Just packed it back in to be dealt with in the spring. I took a couple breaks. I never thought cleaning out a garage could be so emotional.
I’m sad more often these days. Small things can have me on the verge of tears (if not actually crying) at least once a day. I can’t even describe how much I miss him and how sad I feel on a regular basis. And I feel more and more sadness for him, that he was such a sweet boy and he didn’t deserve his life to be so short. There were so many things he had yet to experience. He was such a joy to everyone’s life, I just keep thinking, why did his little soul have to be the one to go? So innocent and loving and fun, and yet there was nothing he could do to stay longer. I feel like I want to tell him sorry that his life turned out like that. I’m sorry there wasn’t more I could do. I’m sorry he didn’t get the same chances as other little kids. I thought this would get easier. Maybe it’s too soon for that yet. I want it to get better.
I have so many memories of Kevin that come on seemingly randomly. I find that lately I’m having memories of earlier in his life.
I had a vivid memory the other night of feeding him after he came home from the hospital. He still had his feeding tube in, and we would need to get up several times in the night and meticulously pour breastmilk into a syringe, raise it up over his head, and let is slowly drip into his belly. Then wait for the puke, which almost always followed. Then repeat. I would be so tired some nights that I would fall asleep with the syringe in the air, or spill it all over him and not remember if it spilled or if he puked. Dawn eventually took over most of those duties because she wanted to know exactly how many cc’s he was getting and puking, and I couldn’t seem to stay awake half the time.
He never really learned to sleep in his own bed very well. We didn’t plan to have a “family bed” but kind of defaulted to that because we just couldn’t let him cry it out. He would end up in our bed most nights, after crying for just a short time and us not being able to let him go. He would somehow end up sideways most nights, sleeping between us. I’d wake up to my face being kicked or with his little fingers scratching at my back or laying in a wet pool of milk because his cup had leaked. I swear we changed our sheets almost every night. We had some guilt because we didn’t enforce good sleeping habits, but he was a special case. We couldn’t let him cry alone in his room. And now, of course, I’m glad he spent so many nights with us, comfortable, cozy, happy, safe, loved.
Later, after he got his big boy bed, I would try to get him to sleep all night in his room. I’d often go in there in the middle of the night because he would lose his binky. I’d find it and pop it in. His eyes would roll back and he’d turn on his side like he always did when he was tired and ready to really sleep. I’d sit by his bedside rubbing his back our touching his cheeks or letting him hold on to my finger. I woke up many times in the middle of the night asleep on his hardwood floor with a sore back. Occasionally I would lay down next to him in his little bed to get him settled down and end up sleeping the rest of the night in there. I had many nights of little sleep, but I guess that’s part of being a parent, and I wouldn’t change and give up those moments for anything.
I almost miss doctor visits. It was such a norm for us to go to his pediatrician, the cardiologist, the lung doctors, pacemaker doctors, check-ups in Iowa City, etc. It was part of our daily life that we had become accustomed to. We had our routines and we knew what we were doing and what was going on. I’ll always remember the x-ray tech during his last hospital visit saying to me as I positioned him and put on the protective apron, “wow, I guess you’ve done this before!” That normalcy of our life as it had come to be defined is gone, and I miss it too.
The feeling that he will suddenly be back in our life is still with me. It’s almost like a twinge of hope in the back of my mind every so often. Like, maybe things will be alright and I’ll go into his room and he’ll just be asleep. Maybe I’ll come home and he’ll be there. Maybe I’ll wake up and discover that this has been a bad dream and he’s still with us. I feel like if he were to return tomorrow I could jump back into that life again without any hesitation, and it would feel just as normal as it always had.
The cool weather really evokes memories and thoughts for me. I often think about Kevin on the way home from work. I turn the radio off and drive in silence. I would always look forward to coming home and seeing him waiting for me at the top of the steps, wanting my keys.
As the weather turns cooler I can imagine him outside in his brown coat. Long hair in need of a trim and bright red cheeks. He’d stand outside for hours if we let him. He didn’t care if he was cold.
Last year we played in the leaves. I’m glad he got to jump in them and throw them around, even though he didn’t really like it all that much. He preferred using the rake like dad.
We never got to go apple picking with him. Last year when we couldn’t go we said we would definitely try to go this year. I wish we could have gone.
The cool weather makes me think of hospital visits for some reason, particularly Iowa City. I guess because Kevin was born on Nov 7, as it was getting quite chilly. The cold weather reminds me of days and weeks spent at the hospital and the Ronald McDonald house. It seems like so long ago, but I think about it often these days. Some of the worst days of our lives were spent there, and yet I have so many good memories as well. I can still imagine myself sitting in the hospital room with Dawn for hours and hours. I can still feel it if I close my eyes. I can almost smell it. I can hear the noises as if they happened yesterday. And along with those memories is always the cold weather and the falling leaves. Maybe that’s why those memories seem more vivid to me now. I’ve dreamt about us being back in the hospital quite often. It’s kind of a comforting feeling. Back when he was getting better, when we had new hope, when we thought life was going to turn out okay after all.
His birthday is fast approaching, and I have anxiety about it. I don’t know how it will go or how I will feel. I don’t know how I will feel for Emily’s birthday, either. Or halloween - all in one week. I wish I could make another birthday video for him. Two wasn’t enough. The thought of him at his 2nd birthday party brings tears to my eyes as I type this. Happy as could be, loving every minute of it. He deserved more than two birthdays in his life! It makes me so incredibly sad right now. I can’t even imagine how it’s going to feel on his actual birthday. It will be exactly 27 weeks from the day he died. The leaves will be falling. It might be another rainy Friday. I’m sure it will be cold. And I’m sure the weather will bring back many happy memories.
Emily’s soccer practices have started. Sitting at the fields makes me think of last year when we always brought Kevin to the games. He was such a stinker and quite a handful - he never wanted to sit still, always running away from our chairs. We would tell him that he couldn’t cross the out-of-bounds line into the field, and he would step as close as he could to it without going over. Then he’d think for a second, look at us, and take off into the field. We were always chasing him, trying to get him off the field before the herd of kids ran him over.
There was a little girl who often sat by us, and Kevin really liked her. He would go over and sit next her rather than next to us. She would do a lot better job of entertaining him than we usually did. Her little brother would sometimes have candy or a drink and Kevin would try to take it.
When he got bored of sitting at the sidelines (he never cared about the game) I would usually walk around with him. He liked to just walk around the area and explore. We’d walk around the baseball diamond. He liked to walk up and over the pitcher’s mound, back and forth. We would walk up and down the steep driveway going down to the field - he would always run down faster than I thought he could control, but he always managed to stay upright. I remember spending a lot of time with him - not just at soccer practices - walking behind him, seeing where he would go, letting him explore. He always seemed so content to just wander around without a care in the world, no worries, no hurry. Taking it all in.
It makes me sad that Emily doesn’t have her little brother cheering her on this year. She would often run by and wave to Kevin and he would giggle. She would talk about him to her teammates. She loved having him there and she was always so proud of him.
Dawn and I would sometimes complain to each other about the fact that one of us spent the whole time chasing Kevin and couldn’t watch the game at all. Now I’m glad for those times that I had to go chase him down or spend an hour walking around and missing the game. There will always be more soccer games, but I can’t create any more of those memories with Kevin.