Grief Over Five Years

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After Jake first died, I wanted to know what the rest of my life, living with grief, would look like. At first, I felt the pain of grief all the time and wondered if my life would always be like that. I talked to other people about their own grief journeys and found their descriptions confusing. They would say things like, “Your grief never goes away, but you get better at dealing with it.” I took this to mean that grief would always be just as painful and constant, but that I would somehow find a method of still functioning. It made the rest of my life seem incredibly overwhelming. I worried about my daughter, Robin, who would grow up without her twin. Would she feel deprived? Would her life always be tinged with loss and sadness? But to my great relief, our grief did change over time and despite Robin’s lack of explicit memories of Jake, her relationship with him developed as well.

My grief-related Facebook posts (found below) demonstrate some of how our grief changed over time, and how our family adapted to our new life circumstances.

Grief can be hard to read about, especially if it triggers your own, so I have written descriptions, in bold, to let you know what kind of information each post contains. Hopefully this helps you choose whether or not it would be helpful to read. I think if you read it from start to finish, however, you will get an interesting perspective on our changing experiences.

Facebook Posts About Grief

June 20, 2017

This first post has some ideas for what to tell people who don’t know how to talk to someone who is grieving.

A few friends have apologized to me for crying while talking to me or hesitated to call because they were crying. They said they wanted to be strong for me. Everyone keeps telling me I’m being brave and I kept wondering what that even meant. I’ve been crying a ton as well. I think being brave or strong isn’t about whether you cry, but about doing the things that must be done in spite of horrible circumstances. I want people to grieve for Jake. I want them to cry for him. No one has to worry that they will make me sad, or trigger my grief. It will be a constant thing no matter what people do or say. Rich and I are already aware that people don’t know what to say and we have pre-forgiven any well-meaning people that say thoughtless things about circumstances they can’t fully understand. We plan to tell each other about those things and laugh. What’s important is that we maintain our connections with people because it is the only way we will keep going. Please don’t avoid talking about Jake. We treasure any memories anyone has about him. But please, no one call me today. Today I am devoting to Jake. There will be plenty of time for talk later.

July 5, 2017

This post describes our lives in the early days of grief.

I haven’t posted about how we’ve been doing in a while, and we have so many caring friends that have wanted to know how we’re doing, so I thought I’d post something.

Rich and I have been trying to get into a new routine now that we are home. Robin and I now co-sleep together so that we can provide the comfort to each other that we need at night. In the morning Robin and I go straight to Jake’s grave and tell him how much we miss him and what we’ve been doing that he would have liked. I usually have a good cry at that point. Then we often have breakfast at a friend’s house because eating breakfast in our own kitchen without Jake is very difficult. We spend a lot of time out of the house and particularly out of the basement where we played the most in the past. I have been slowly spending more time in the basement, but I think I’ll have to put Jake’s play tables away because it breaks my heart to look at them and especially when Robin plays with them. In the afternoon Rich and Robin and I go back to the graveyard. We go for walks and see friends when we feel up to it. And after Robin goes to bed we spend time looking at pictures and videos of Jake and remembering stories of him. Our counselor gave us some really good advice to plan out our grief sessions, so we’ve tried to schedule times in the day to remember Jake, so that at other times we can focus on being attentive parents to Robin, or even take a short time to watch some trashy show to give ourselves a break from reality. Our counselor actually came to the funeral and has seen the amazing support we have gotten from our friends and family. She said the only way she could sum it up was, “That’s what love looks like.” We are so grateful for the love we have been shown. Not a day goes by that someone doesn’t bring a meal, or give a gift, or make a donation, or mow our lawn, or send a supportive message. We don’t always have the mental energy to call people back or write back as much as we would normally, but it means so much to us. If anyone has any memories of Jake, we are always checking jacobhillerby.com for stories or videos of Jake. If anyone has anything, no matter how small, that they can post, we would really appreciate it. Please write the story to Robin, if you can so that we can read it to her when she is old enough to understand and she can create a conception of Jake. Love you all!

July 9, 2017

This post describes the many things you have to do for the first time (and get used to doing) without the loved one, and how difficult it is to realize time is passing without them.

First time taking just Robin to the swings. There have been even more firsts than I ever thought possible. The swing beside her is so empty, as is the space beside her in the grocery cart, in the car, in the bath, and so many other places. The babies develop so fast that I had a realization this morning that the Jake I remember already is not the Jake he would be now. Robin is babbling more, has more teeth, and is so close to walking. I can only imagine what Jake might be doing. People tell me it gets easier but never goes away. It’s hard to imagine an easier life that’s missing half my heart.

April 19, 2017

This post describes toddler Robin’s developing relationship with her deceased brother, that many things are starting to get easier, although some are still difficult, and announces that I am pregnant again with twins, but that I am unsure how this will go within the context of our family’s loss.

Hi Friends,

It’s been a rough 10 months since we lost Jake. One thing I am grateful for is that Robin has a real relationship with Jake. She talks about him all the time. She insists on bringing extra snacks to put by his painting or to pretending to feed to his picture. She points beside her when we are doing activities and says his name until I acknowledge that he should be there too. She says things like “-ake milk,” or “-ake walk,” wanting me to acknowledge, “Yes, Jake liked milk too,” or “Yes, Jake would have been walking beside you.” She loves looking at his pictures or videos and hearing stories about the things they did together. Yesterday we were organizing our storage space and brought out a jolly jumper. She made Rich hang it up, then bounced in it, saying “-ake!” until Rich asked her a few questions and finally figured out she was pretending to be Jake. She knows he loved the jolly jumper. Every set of toys we have has a Robin and a Jake doll that play together. And each day we have to spend a while picking out just the right sock for Robin and just the right sock for Jake, so she rarely has matching socks. Before bed she says goodnight to his painting. I never imagined that at a year and 10 months she would have such a strong connection to Jake. It’s more than I ever hoped for at the beginning.

Although our grief for Jake will never be gone, many things have gotten easier with time and repeated exposure and we have resumed our normal work schedules. Since we lost Jake, it has always been hard to see twin-related things out in the community. I loved being a twin mom and I lost that life with Jake. A few weeks ago, I saw twin babies in a grocery cart. (This one is particularly hard to see, as I spent many a cold winter morning pushing the twins around the grocery store). I turned my tear-filled eyes away from those other twins, only to end up staring right at Twin Brand Sugar! What are the odds! I had to go in the “Employees Only” section to recover, then ask a guy I don’t know that well for a hug.

Well, we will be getting used to twin things again because we are happy to announce that I am pregnant with twins again! We will get back some of the life we had before, although it will never bring back the baby we miss. It’s the only type of baby rearing we’ve ever known and we desperately hoped to have it again, although at times we didn’t have high hopes. Our fertility doctor kept telling us that the goal was a single healthy baby and that it was malpractice to try for twins. We agreed we would cooperate with his methods, but we still hoped. Everyone at the clinic was pulling for us, and in our first round of IUI, we got twins! It’s definitely going to bring some mixed emotions as we integrate the joy of new life and love into the grief, longing, and loss. What I do know, is that Robin brings me joy and makes it easier to manage my grief, so I can only assume that more sweet little ones that I love will do the same. I’m not sure how I’ll react when random people say the things that I used to miss, like, “Oh, are they twins? Double trouble!” Will Robin feel left out? Do I tell people she’s a twin too? I will probably just go with what feels right to me and Robin as time goes on. Robin is excited about two babies. When Rich first told her, she went to her Puppy Surprise toy (where you can pull puppies out of the mother dog) and held up two puppies. I hope that she will grow up feeling like this is normal, since it’s all she will remember. Something like, “In this family, we have twins. My twin is in Heaven.” But if anyone knows of someone who has had this situation before, I am dying for a mentor.

I want to thank everyone again for your support through all of this. The donations, food, dog walking, babysitting, cards, and words of encouragement helped sustain us during the times we could barely take care of ourselves and could only forge through for the sake of Robin. We are so lucky to have the family, friends, and community that we do.

October 13, 2018

This post talks about the unexpected joy and rightness we felt with our new babies, despite my emotional disconnection from my pregnancy. I hear it is common to feel disconnected from the next pregnancy after a loss, but that when you meet your baby (babies), you love them. It also describes Robin’s budding relationship with her new siblings and her deceased brother.

Many friends have said they enjoy reading my posts about how life has been since Jake died, so I thought I would write a post about how things have been with our new babies within that context.

After Jake died, we wished for twins again to regain some of the old life that we lost. When I got my wish, I was surprised at how ambivalent I felt about having more twins. They would never replace Jake and the twin relationship lost there. How would Robin feel about it as she grew up? Would grief taint our joy in having new babies and each moment be a reminder of just what we lost? Would I feel happy when I met them or just sad that they weren’t Jake and Robin?

As they got me ready for surgery and started prepping themselves and the room, I had a grief moment as they prepped the bassinettes for the arrival of the babies. But it was no worse than any other grief moment I have had. It eventually passed and we got involved in the surgery. The birth was not just the same, as Zachary had to be raced off to the NICU. I got to hold Casey and only visit him later, not knowing what he looked like under his breathing mask, but knowing he was in stable condition. We were glad he was doing well and within 12’hours, his mask was off and we saw his resemblance to Jake. It was hard seeing Zach in his incubator and not being able to hold him, just like when Jake was sick. I tried to sing to him, like I had to Jake, but my voice kept breaking. But soon enough he was in my arms and nursing well, so got discharged from the NICU and we were together again.

To our surprise, grief has not tainted the joy we have in our new babies. Of course we still have grief moments, but the joy from the babies actually lets us reminisce about our good times with Jake and Robin in a really positive way, as we compare each of them and keep mixing up their names!

I thought having a boy and a girl, especially ones that look so similar to our first set, could be worse than if it was really different, but it has actually helped with another situation that I wasn’t sure how I would handle; strangers coming up and making a fuss over them. I loved when people cooed over our first babies, but I didn’t know how I would handle it for the next ones, knowing our lives were not as happy and complete as these strangers believed. But several people came up as we were leaving the hospital to tell us how cute they were. I felt that when they complimented our new twins, it was also a compliment to our first set, because they look so similar. I felt like Jake was included, even though I chose not to mention him to the people who didn’t know our story.

Then there is Robin. She absolutely loves the babies. She will ask, “Why my baby crying?” She sings to them in a soft, high-pitched voice that she saves just for them. She pats their heads and holds them with help. Yesterday when Zach was fussy, she brought him a blanket to keep warm and a toy to chew on. She also knows that Jake is their big brother. She still talks about Jake all the time. Things like, “Jake is holding my other hand” and pointing out the opposite car window to show us something, saying, “Look out Jake’s window.” This makes me feel like she will be okay with having more twins in the house, because to her, she still has her twin with her.

Don’t get me wrong, it’s still not easy having twins and a toddler. Rich and I only got about 45 minutes of sleep last night and there were certainly some low, frustrated times during the wee hours of the morning. But it has indeed given us back a piece of the life we lost, and last night before bed, we played with a happy Robin, while taking care of Zach and Casey and it felt really right.

March 29, 2019

This post describes Robin’s relationship with Jake in comparison to my early fears about Robin’s development.

Brought the kids to see Jake. First family picture of them all together.

I talked recently to a mom who lost a twin in pregnancy. She asked how Robin was and if she seemed to feel like a part of herself was missing. I forgot how much I used to worry about that. I told her that Robin is a completely happy and confident kid, who knows her twin is in Heaven and talks about him regularly without sadness. Like, “I’m drawing a pink picture for you. Jake is drawing a green picture for God.” Or when being silly, “Jake pooped on God and God cried.” I told Robin I was pretty sure that didn’t happen. I still miss Jake all the time, and Robin sees that and gives me hugs when I need it, but it is good to see my daughter growing up happy, with a healthy outlook. She sees our pain, but doesn’t feel it. And she still has a special relationship with Jake. It’s the best I could have hoped for.

June 20, 2019

This post shows how we are starting to change the way we think about our life satisfaction and our emotions. It shows how deep our grief was in grief moments, but that we weren’t feeling it quite as frequently. The first paragraph is pretty sad, so feel free to skip right to the bolded part.

By this evening, it will be exactly two years ago that we gave our beautiful, but badly brain damaged son, Jake, a bath, put him in his yellow pajamas, read him his favourite book, “I Love My Dad,” and kissed him goodnight one last time. He held on into the wee hours of the morning, then gently passed on to Heaven, one day before his and his twin sister’s first birthday. I believe that when my life is over, he will be the first person I see. I will spend the rest of my life waiting for that moment. In the mean time, I try to live my life in a way that will make him proud that I was his mom, even though we had such a short time together. And we do our best to include Jake as much as we can in family activities so our children will always know him. This experience has taught me the true unfairness of life and also the true goodness of people. I will never stop being grateful for the tremendous support we received and still do receive from our friends, family, community, and even people who have never met us before. I used to feel like we had the perfect life. We had everything we could have ever wanted once we had our beautiful twins. Then I felt like life was intolerable and I fantasized about some accident happening to let me skip out early. Now, I no longer try to rate my overall life satisfaction. There are moments filled with joy; laughing with friends, savouring our other sweet children, enjoying good meals. And there are moments of suffering; remembering how sweet and beautiful Jake was and missing him desperately. Having a million one-sided conversations with him and never hearing back. Each moment eventually passes. That is life. We’ll all get through it together. See you on the other side, Jake.

June 21, 2020

This post doesn’t seem quite as sad as the previous ones. It talks more about the children’s developing relationships with Jake, finding a mentor family that had similar experiences, and creating a new family tradition. We didn’t have much time that year to focus on our own grief due to the Pandemic.

For most people, today is Father’s Day. For our family, today is also the third anniversary of our son, Jake’s, death. Normally we get all-day babysitting for the kids and just give ourselves some time to be with our grief and sing songs to Jake at his grave. Due to the pandemic, we will not be getting childcare this year. But Robin is at an age in which she has a better understanding of her loss and deserves to participate in remembering and honouring Jake. Last week I found her in her bedroom, singing softly. Here were some of the words of her song:

“I still love you. Everybody has each other. But I don’t have you (points up). I really want you to come right now. I know you’re up somewhere but I don’t know where you are.”

She didn’t seem sad. She was simply singing to Jake about her experience. During this pandemic she has said quite a few times how she wishes she had Jake to play with. It’s clear that with each developmental step, Robin is processing her loss in a new way. To help Robin through this, I have been able to connect her with a mentor.

After Jake’s death, I searched every twin and twin-loss organization for a family who had lost a twin, then had twins again. I couldn’t find anyone who had our exact situation. Then someone mentioned that there is actually a family in town like us, except about ten years ahead. I have already talked to the mother of the family. Robin is eager to talk to the oldest sister. We have arranged a video call in the near future. I think it will help Robin feel understood and not so alone in her situation. I hope they can meet someday and stay in contact as their lives progress.

Overall, Robin is a happy kid who loves playing with her younger brother and sister. Casey follows Robin everywhere and imitates everything she does. Zach is good natured and asks for more when Robin sings. Robin can also now play with one of her best friends, Max. It’s great to see her with such a close relationship to a boy her age. They play together, they play separately, and sometimes they argue, but they never want to leave each other when it’s time to go. After Jake died, I had hoped she could form a close relationship with a little boy Jake’s age. Max even dressed as Han Solo for the first Halloween after Jake died, when we had planned to dress Jake and Robin as Luke and Leia. It’s a perfect example of how Max does not replace Jake, but is there to be Robin’s little boy companion in Jake’s absence.

Casey can point to Jake in pictures now. She calls him “Dates.” I have made Casey and Zach a book about their big brother; how his life paralleled theirs for his first year of life, where he is now, and how they can relate to him from Earth. It’s being printed and shipped right now, but I’m looking forward to reading it to them.

Yesterday, with the help of Sarah Brown, we decorated our back yard to look like Candyland, a place where Jake and Robin meet in the stories we write for them. The kids played and ate liquorice vines and lollipop flowers and cotton candy clouds. Robin pretended Jake was there playing with them. It was magical. This is our new yearly tradition. I think it will really make honouring Jake fun for the kids.

Today Rich will receive homemade gifts from all the kids (Robin does Jake’s parts, e.g. hand prints). Father’s Day dinner will be at Jake’s grave.

Rich spent his first Father’s Day (as a father) in the hospital waiting to see if Jake would die, or just live out his life severely brain damaged. Rich will never have an uncomplicated Father’s Day, but we will do our best to make it the best Father’s Day yet.

June 21, 2021

This post talks about how we are coping quite well in our daily lives, but that grief moments can still feel extreme. The grief moments had gotten much farther apart by this time. Fewer things triggered our grief, since almost nothing we had to do was a “first” anymore. By this time we had done more things to memorialize Jake’s memory as well, which was a comfort. If you have read through the whole thing, you may notice an ongoing theme of the loving acts of others helping bolster us up. I talk more about it in my sermon on suffering, which can be found in my post about “Spirituality and Suffering.”

It has been four years since we said goodnight to Jake, before he died in the wee hours of the morning, a day before his first birthday. A lot of the time I feel I am coping very well. I have done a lot of psychotherapy, have explored new spiritual avenues, and have done my best include Jake in my children’s lives in a positive way. Then something happens to remind me of the depth of my loss, and the grief comes back as if it never left.

Tonight, I read Robin the story I made for her as a toddler, explaining Jake’s life with her and his death. I ended up sobbing and Robin hugged me and said, “Poor Mom. If I ever get the chance to have one wish, I will wish for Jake to be alive again, for you.” The fact that Robin would wish that for my sake, and not her own, shows that I have succeeded in my goal to have Robin know Jake, while also feeling satisfied with her own life. Robin loves Jake and is confident that he loves her. I’m never sure what people will think of this, so I haven’t posted much about it, but I’m going to share it now because it’s a huge part of the children’s relationship with Jake. Robin has been finding candy and little toys at Jake’s grave since she was a toddler. Since Casey and Zach joined the mix, they have been discovering enough for all of them. They get so excited to visit his grave and they all shout, “Thank you, Jake!” as they leave. I have written a story for Robin about her journey to meet Jake in a land between Heaven and Earth, called the “Candy Clouds.” Every year on Jake’s death anniversary, we decorate the whole back yard to look like the Candy Clouds. The kids romp around, discovering real liquorice under pretend liquorice vines and real lollipops by giant fake lollipop flowers, and they pretend Jake is with them. I think he really is.

It’s hard to know what Casey and Zach really understand. Zach has been known to climb up on a gravestone when my back is turned and say, “Look! I’m a Jake!” They also have a story explaining about Jake. It parallels their lives with Jake and Robin’s in the first year and ends with his age-progressed picture so they can understand that he’s their older brother. Casey has asked many times for the explanation of why Jake died. I re-explain it every time, as simply as I can. Whatever their understanding, Jake is a positive part of their lives. I think that even when they discover that certain human hands have been helping Jake leave gifts for them, his love will be so ingrained in their psyches that it won’t matter how it happened. And after all, God works through people. Why can’t Jake?

Since the time that Jake died, we have been shown an outpouring of love. Not just from friends and family, but from complete strangers. This past year, Donna Simmons, who had never met us before, took 140 hours and a lot of physical and emotional energy to make us three quilts out of Jake’s clothes. John Looser, who saw my post on Kincardine Swap and Sell, made us a mailbox to Heaven for Jake’s grave. When I couldn’t find the candy Robin thought Jake would get her for their birthday, a mom from Formosa who had never met me, bought it for us and dropped it off at my door. As well, the many people who have donated to Jake’s charity are helping create a legacy for Jake that will help students in need for years to come. People are truly good. Nothing that happens in the rest of my life could change that belief. Thank you, everyone, for the love and support you have shown us and our sweet little boy. I like to think that Jake is happy with all the good things that have been done in his honour, by a huge network of people, connected by love.

June 21, 2022

This post reflects on how far we have come in five years.

It has been five years since we lost our son, Jake, to meningitis, a day before his first birthday. Jake was so sweet and calm, that my sister said she sometimes forgot he was a baby. Jake loved his twin sister, Robin, whose hand he would reach out to hold while nursing. He laughed so hard when he played with our dog, Chipsie, and never got dissuaded from playing again even after being overwhelmed by licking. He gave the best hugs and had the most beautiful turquoise blue eyes I had ever seen.

After Jake died, life felt desolate. I asked my friend, Lynne, who had lost a child, years earlier, if I could ever feel normal again. She said to give it five years. I was shocked that I essentially needed an Undergrad and Masters in grief to become the “expert” I needed to be. But here we are at the five-year mark. And in these five years we have experienced all the emotions of grief, as well as the joys that life has to offer (sometimes jumping back and forth between them, sometimes experiencing both simultaneously). I have done countless therapy sessions, read dozens of spiritual and psychological books, and talked with mentors, friends, and family. We have developed our own traditions to connect to Jake (check out the grief section of my blog for details) and have raised our children to feel connected to him. And we couldn’t have done it without the community of love that surrounded and supported us from the very start, and continues to do so. Sometimes it seems unbelievable. But it has also brought me to believe, on a deep level of knowing, in the true goodness of humanity.

Here’s one recent example. Many of you already know that my children discover candy from Jake, at his grave, on a weekly basis. I have been suggesting to my children that human hands may be helping Jake, just like how they say God works through people. This year, it felt more true than ever. When we had Covid in April, Rich and I were unable to go out to the store to buy candy to put there. I asked my friend, Melanie, if she could do it for us. But before she even got there, another mom who visits the cemetery (who didn’t know we had Covid) had already left some. Melanie left the candy that our kids found the next day, and also left a snack for me. To my amazement, discovering something for myself DID feel like I was getting love from Jake, even though I knew Melanie had put it there. And then the next day, someone else anonymously left candy again! So, during our toughest times, three different people got the idea to leave candy for us from Jake. Coincidence? Or does Jake work in mysterious ways?

Sometimes Robin asks me to pretend to be her doll who is jealous of her candy. When her doll whines, “Hey! How come you get candy every week!” Robin replies, “Because Jake is my brother and he loves me!”

Casey and Zach are starting to really understand who Jake is. In previous years Zach would stand up on a gravestone and say, “Look! I’m a Jake!” But this year they really have a sense that Jake is their brother. Sometimes when we drive in the car, everyone fights about who Jake is sitting beside. Little voices yell, “He’s MY brother!” “Well, he’s MY twin!” I say, “Guys! I’m sure Jake can be anywhere and everywhere he is needed!” Not sure they get that concept yet. But it is cute to see them put Jake into a scene with them. Jake has been said to have a place at our table, a place on our couch, and a swing beside them. Casey has named one of her dolls “Jake Baby” and keeps trying to get me to hold it or put it inside my shirt to be “pregnant” with him. It was painful at first to play this game, but if this is the way she wants to connect to Jake at this age, I’ll go with it. And I’m getting used to it now. Although she does get pretty offended when I put Jake Baby down on a random counter to make dinner, and we had to discuss several times that Jake Baby doesn’t really need a car seat like the other children.

So, five years later, after the most devastating tragedy of our lives, family life feels quite normal on a regular basis. I still fantasize about what life would be like with Jake here, but I also feel gratitude for my increased ability to help other people who suffer, because of my “education” on what suffering really is. Sometimes the reading and thinking I have done have let me give ideas to other people who are new to life’s pain. Sometimes it’s enough to just be a friend who really understands what people are feeling. I have always tried to help people in need, but I have realized there’s a whole new depth to it, when I can help someone in need, and then empathize about how difficult it is to have to accept help. Rich has also felt similarly about his life. He has been able to talk to his friends and acquaintances about their losses with a new understanding and ability to help. He still misses Jake, and Father’s Day is a tough time for him, but he enjoys watching the kids “interact” with Jake in their imaginations.

I am still a long way from the end of my journey to connect with Jake. In September, all the children will be in school. My hope is that this will allow me more time to focus on actual spiritual practices, instead of just spiritual theory. I hope that eventually I will be able to hear a message from Jake in a way that feels real to me – a way that leaves me feeling satisfied for the duration of my life, until I can see him again.

Conclusion

Every person, every situation, and every grief journey is different. There’s no one way to get through grief or life. My hope in sharing these posts, is that it will give you a better idea of grief over time, than just saying, “You get better at dealing with it.” Five years doesn’t solve everything, but I did a lot of grief work in that time and it feels a heck of a lot better than the first year. I’m sorry for the losses in your life that led you here. Good luck in your own journey. I hope this helps in some small way.

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