A journey through grief: a daughter’s love

The story of my love for my dad starts long ago when I was born an only child to parents who adored me and who were the centre of my world. But there is way too much to tell, so I will start in my 20s, after I moved to London. My dad and I, despite living very far away from each other (my dad remained in New York), were very close. As close as any father and daughter could be. Yes, we hit a rough patch in our relationship  when I was in my early 20s due to a messy divorce from my mother (who I am also close with), but we got through it and our relationship only strengthened.

I worried for my dad as he entered his 50s. His own father had died of bowel cancer at 55 and that age seemed to hang over his head like a dark cloud. He didn’t talk about it often, but then my dad wasn’t one to really complain or focus on the negative, so for him to mention it at all was something. When my Dad reached 60 and retired from work, it was as if we breathed a mutual sigh of relief. He had survived the danger zone and was fairly healthy and active. He had outlived his father. Perhaps he had got away with it.

The diagnosis

My dad visited us in London and we visited him in New York and we had such good times. We ate in restaurants, had family meals at home, had a weekend in Bruges, visited stately homes and festivals and even went skiing together. We really did have fun. He was there, in Spain for our wedding and he walked me down the aisle. He came to meet his newborn grandson when he was only four days old and came back two more times that year.

It wasn’t until late 2016, when my dad was almost 67, that he dad received the devastating diagnosis that he had cancer. My son was only turning two years old and my daughter hadn’t yet been conceived.

This was the news I had been dreading and while I was shocked, I cannot say it was entirely unexpected. On his last trip to London in 2016, when H was around 18 months old, my dad was walking a little slower, a little more gingerly than usual. I gently questioned this as he was always big and strong and healthy and although he wasn’t exactly young anymore, he certainly wasn’t old. He brushed it off, saying he had sciatica in his hip and it was nothing to worry about. He also mentioned some bowel symptoms but again brushed off my worried questions and pleas to go see a doctor, saying he was fine.

My dad had so many plans. We talked about the many things he wanted to do in his retirement and so many things he wanted to do with H when he was a little older. He wanted to visit us more often, go on holidays and advance his political career. We had a wonderful time on that visit – we walked all over London and played with H and in hindsight I wish I had realised what was happening and could have done something about it. But hindsight is rarely helpful and can be a positively tortuous thing.

Around six months later, when H was turning two, my dad was diagnosed with bowel cancer during a routine colonoscopy. At first it was not thought to be anything too serious (bowel cancer is very curable in its early stages), but that soon changed when the doctors operating to remove the bowel tumour also found tumours in his liver and a lymph node. It was stage 4, but my dad was as optimistic as anyone could be in his situation.

My husband and I knew we wanted a second child, but until that moment I wasn’t sure I was ready to go through pregnancy again. Although I had been considering putting it off for another six months, this news made my decision easy; I didn’t want to wait another moment as I wanted my dad to have time with his second grandchild.

My dad, having worked for New York State for many years, had the best health insurance and medical care anyone could hope for. The doctors said that with treatment even stage 4 cancer can sometimes be controlled and lived with; it’s not always a death sentence. My dad’s doctors were completely on his side and my dad wanted to LIVE. He would have done anything to LIVE. His doctors were hopeful and so was he, so together they tried every cutting  edge, excruciating treatment they could think of. He had surgery to remove the tumour in his bowel and to remove the tumours in his liver. He had many chemo treatments during the time I was pregnant with Baby I and counted himself lucky that he didn’t experience the terrible nausea or hair loss that some people do. And we FaceTimed and we talked on the phone and I worried and worried. Because he was my dad and I loved him. And I tried to remain strong, positive and hopeful for my dad, for myself and for H.

Baby I was born in July 2017, a healthy baby girl. My dad was thrilled at the birth of his little granddaughter, but this time he wasn’t well enough to fly to London to meet her. He had just had surgery to implant a pump inside his body to deliver chemo directly to his liver and was recovering from that and anyway he needed to be in New York for his chemo treatments. I could see, even on FaceTime, that he was growing thinner and thinner but he chalked that up to all the surgeries. And they would make him better so that couldn’t be a bad thing, could it? Around that time was when H started asking questions. “Why does Grandpa look that way? Is he he ill? Is he going to be ok?” Darling, I wish I knew.

December 2017

We visited my dad at the beginning of December when Baby I was four months old and H had just turned three. It was startling to see how much weight my dad had lost and he walked very, very slowly, often with the aid of a walking stick. Yet, he continued to tell me that he would be fine and that I shouldn’t worry about him. H didn’t seem to notice too much, or didn’t say anything if he did. Our trip was so special – it was only the beginning of December, but we celebrated Christmas together, as if it was our last, but not realising it actually would be. My dad snuggled Baby I. He cuddled H. We talked and laughed and loved.

The house was decorated for Christmas and full of Christmas cheer. We celebrated Christmas morning as if it was the real thing and had a family Christmas dinner. My dad and stepmother took us to Chuck E Cheese to eat pizza and play games and we went for a ride on the Polar Express where it actually snowed and H met the ‘real’ Santa! My dad joined in with everything, although it was very cold and excruciating for him to sit on the hard train seat. He was suffering, really suffering. I could see it written on his face but I still didn’t realise quite how much then. But he did it for us. My dad was so strong and brave that, although H could see that his grandpa looked thin and grey, Grandpa was still Grandpa and they had so much fun together. It was magical for H and I will foster that memory in the hope will remain ingrained in him forever.

After our visit, my dad’s hip pain drastically worsened and he was struggling to walk. He had several more surgeries, including one to fix a problem with his chemo pump. My dad’s fingers were now so numb from the nerve damage caused by the chemo that he found it very difficult to hold anything or text on his phone and he was finding it very hard to concentrate for any period of time. I still called him or FaceTimed, nearly every day, but I noticed I had started receiving less emails and texts. I thought this was due to fatigue from all the treatments, but I now I think this was the beginning of the end.

April 2018

The next time we visited was April 2018, for Easter, and this time my big, strong dad was a shadow of his former self. His eyes looked hollow and haunted and he had lost so much weight, I was afraid he would disappear before our eyes. Baby I was now eight months old and this time they really bonded. She could sit up and play and I would sit her on my dad’s lap or in her baby walker on the floor next to the sofa where my dad lay and he would talk to I and cuddle her. He thought she was so beautiful with her huge eyes and blond, baby chicken hair. My dad would watch H play and ask him about his preschool and his friends.

One morning in particular stands out for me on that visit. The beauty and heartbreak of my dad’s love for his grandchildren and the sadness of our situation hit me hard as I watched my dad tenderly stroke I’s face and I cried and cried and couldn’t stop. My dad was so comforting to me when I should have been the one comforting him. He still firmly believed he would beat the cancer and get better, or at least that is what he told me. And I tried my best to believe that.

When I emerged from my sorrow I could see H, watching and taking everything in as his mummy cried and cuddled her own dad. He was now three and a half and starting to understand that Grandpa was very ill and that Mummy was sad. Although I try to be as happy as possible around my children, I have never felt it was right to completely hide my pain. I think it’s important for children to know that being sad is nothing to be ashamed of and it’s a sign of love and caring. H stopped playing, came over, climbed on my lap, gave me a cuddle and asked if I was crying because my daddy is ill. I said yes and he hugged me and said that everything would be ok. My sweet, sweet boy.

After that he started asking questions, which were usually very matter of fact and without a hint of emotion, which sometimes I found hard. “Why does Grandpa have to use a walker or walking stick to walk?”, “Why does Grandpa sleep so much?”, “Why is Grandpa so sick?” or “Why are you crying, Mummy?.” Little things that he was noticing in his almost four year old way.

I have always felt that it is very important to answer all of H’s questions and to answer them simply but truthfully…”Grandpa has to use a walking stick because his hip hurts and it helps to be able to put some of his weight on the stick.” or “Grandpa has to use the walker because he is a little unsteady when he walks and it helps him to not fall.” or “I’m crying because Grandpa is hurting and I love him so it makes Mummy sad to see him hurting.”

And we would talk about happier times: “Do you remember when Grandpa let you sit in his red sports car and on his big ride on lawn mower?” or “Do you remember when Grandpa used to come to our house to visit?” or “Do you remember who we went on the Christmas train with?” I want to keep those happy times with Grandpa fresh in his mind so time doesn’t wash them away as it tends to do to the memories of the very young.

July 2018

We are normally only able to make the long trip to New York twice a year, but this year was an exception. I wanted to spend as much time with my dad as possible, so we planned a third trip for July, not realising that it would be the last time we would all be together. He had just had a hip replacement to remove the diseased bone and he was in so much pain from the surgery but we were all so hopeful that this would eventually relieve his pain and extend his life. Even then he told me that he had a long road of recovery ahead but that he would get better.

But at only 68, my handsome father looked even more frail and old and grey this time and, although I wanted to believe him that he would beat this dreadful disease, to me it had become clear that he was slipping away from us. He could no longer even get himself into bed on his own and he was in so much pain that he couldn’t join us for meals at the table.

Baby I had her first birthday while we were in NY and she was crawling and my dad loved watching her and H playing on the floor from his position on the sofa. He tried to sit and watch the children and talk to them as much as he could but I could see his hip was causing him so much discomfort that he couldn’t sit or lay or stand in any one position for more than a few minutes without wincing and quietly crying out in pain.

My dad was now spending more time in his bedroom than downstairs with us and H noticed this. He started asking me if Grandpa was going to die. Up until that point, H’s only experience of death was seeing worms that had dried up in the sun on the pavement or ants that had been accidentally stepped on. How could he know that death was coming for his grandpa? Somehow he just knew…and it broke my heart. I told him that everyone dies someday and Grandpa is very sick so it’s possible that he will die, but he is doing everything he can to get better.

A week or two before H turned four, he was with me in my bedroom while I was getting ready to take him to school and he saw my childhood teddy bear, sitting on the shelf in the wardrobe. I remember getting my bear for Christmas when I was five, so he is very old indeed but somehow looks almost new, even though he was thoroughly cuddled for years and years. H asked me why I don’t sleep with my bear anymore. I told him that I didn’t really know, but I guess it’s because grown ups don’t usually sleep with teddy bears. H said, “Mummy, I think you should sleep with your bear. I think he would make you feel better.” Wise words, my sweet boy. So I did.

By September my dad was very weak and frail and his body was beginning to fail. I could see it when we talked on FaceTime and hear it in his voice. My dad and stepmother had long planned to go on holiday with family down to North Carolina and my dad was so looking forward to it. He wanted to swim and go fishing and sit in the sun. He wanted to forget, even just for a few days, how ill he was. The day before they were to leave disaster stuck; he had to be rushed down to the hospital in the City to have another emergency operation, this time to remove the chemo pump as the skin covering it was now to thin to hold it in. Almost unbelievably, the next day my strong, courageous dad got in the car to make the long journey from New York City down to North Carolina. Nothing would have stopped him. And, although he was in unimaginable pain and he didn’t get to do the things he wanted to do, I think he was glad he went. And I think he knew then it would be his last holiday.

October 2018

In early October my dad was back in hospital as the pain had become so intense and this time it was clear he would be there for a while. We spoke on the phone every morning and my dad remained optimistic as his doctors tried to figure out why he was in so much pain and how to control it. I would put H on the phone with him and H would say, “Grandpa, I love you, love you, love youuuu!!” before losing concentration and running off as little kids do. My dad called us for the last time on 14 October to wish H a belated happy birthday as my dad had been too unwell on the 12th and 13th to talk on the phone. I missed the call so he left a voicemail saying he was feeling better and that he hoped H had fun on his birthday weekend and that voicemail has now become one of my most treasured possessions.

My stepmother called me on Wednesday, 24 October and told me that my dad’s health was deteriorating and I might want to come to see him. We flew to NY on Friday, 26 October on 36 hours notice with four year old H and 15 month old Baby I. There were lots of clothes to wash and pack and lots of preparations to make and although I tried to keep things as normal as possible for the kids, the situation was anything but normal.

H was on October half term so he wasn’t in school and I had to sit the kids in front of the TV with snacks to keep them busy while I prepared for our trip; something that I normally wouldn’t do. I told H that I was packing because we were going to see Grandpa as he was very ill. H asked what would happen. I asked him what he thought would happen. He said, “I think Grandpa might die.” My love, I think so too.

My stepmother told me before we left that my dad was doing a little better and the doctors were still treating him with the hope that he would recover. My dad was still asking for his favourite TV shows and I was able to speak to him briefly on the phone. He told me he was “hanging in there”. All I wanted to do was cuddle my dad, but at that moment I felt very, very far away.

The hospital musician had come in when my dad could still speak and asked him whether he would like to hear some songs. My dad asked for the Beatles and ‘The Sound of Silence’ by Simon & Garfunkel. Have you ever listened to the words of that song? I knew in my heart at that moment that he was dying and nothing could save him. “Silence like a cancer grows…” Growing up, music was a huge part of our lives…My dad would always play music in the house and I would play my piano or guitar and sing for my parents. When H was near death with sepsis (miraculously he recovered – read our story here) and the doctors said they were doing everything they could, the nurse told me that I should sing to him. I will never forget singing ‘Baa Baa Black Sheep’ to him over and over. I wanted to do that for my dad now, so I recorded myself singing ‘The Sound of Silence’ and asked my stepmother to play it for my dad until we got there. Trying to hold myself together while I sang that song was one of the hardest things I have ever done but I am hoping hearing my voice singing one of his favourite songs gave him some comfort during that time.

I packed, quicker than I ever have before, we booked a hotel and got everything in order. The fear I normally feel during a flight (I’m a terrible flyer, despite flying many times a year) was entirely eclipsed by the fear or losing my dad. When we arrived in NY after our eight hour flight, instead of my dad or my stepmother being there to pick us up and take us to their house in Upstate New York, we had to get a taxi to a hotel near the hospital. An unfamiliar place in unfamiliar circumstances.

As soon as we arrived I wanted to get to the hospital and so left the kids with my husband in the lobby of the hotel, waiting to check in. When I arrived at the hospital and entered my dad’s room, it felt like the wind had been knocked out of me. My dad was awake but unable to speak or swallow and he looked so much worse than I had expected, almost as if he was already dead. I was flooded with so much fear and love in that moment. He mouthed “I love you” and held my hand and I talked to him and quietly sang his favourite songs and held his hand. Two hours after I arrived at the hospital, the doctors took my dad for a brain scan to find out why he couldn’t speak or swallow. After twenty or so minutes, the doctors emerged from the MRI room with glassy eyes and we were told the cancer had spread to his brain and he had very little time left. Up until that point he had been in a shared room but, mercifully, he was moved to a private room so that we could be alone with him in his final hours.

 I had to go back to the hotel and sleep that night as I had been awake for 24 hours by that point and my dad was sleeping and in fairly stable condition. The next morning when I arrived to his room,  my dad opened his eyes and pawed at his oxygen mask, trying to get it off and motioned for me to come closer. My stepmother asked if he wanted to give me a kiss and he nodded yes, so we took off his mask and he  kissed me goodbye. I was holding his still very warm hand and he squeezed it with all his strength. I told him I loved him and that I would be there with him and that it was ok to go if he needed to. He passed away with me, his daughter and my stepmother, the loves of his life, holding his hand and kissing his forehead around 36 hours after I arrived. It was his 69th birthday.

I returned to the hotel feeling like an empty shell. Once again, I hadn’t slept in almost 24 hours and my dad was gone. I was devastated but I had to be there for the kids. H knew as soon as I walked in the door. He asked, “Has Grandpa died, Mummy?”. He was inconsolable for around ten minutes and then went back to playing. So I went into the bedroom, cried and cried and had a long nap and then returned to being their mummy as best I could.

When I woke up we went for a long walk in Central Park and everything looked different. All the happy people taking selfies in the park seemed absurd to me in that moment. Didn’t they know this was not the time for such frivolity?

That week it rained. It rained and it rained. It seemed as if the earth itself was crying for my dad. Things became a blur and it felt as if the world sped up to the point where I felt I might fall off. We got the Metro-North up to my dad’s house and of course, my dad wasn’t there, but it didn’t seem possible. The chair where my dad used to sit sat there empty, but constantly drawing my attention like a beacon. I don’t know why I was so focused on that chair, my dad hadn’t been well enough to sit there for years and anyway it wasn’t even my dad’s chair. It was a replacement, bought by my stepmother in the hope it might be less hard and relieve the pressure on his hip and ease his pain. It didn’t.

H took things in his stride. He knew we were at ‘Grandpa’s house’ and he knew Grandpa wasn’t there now. That was a fact. Sometimes he would ask questions, like “Did you see Grandpa die, Mummy?” or “When Grandpa died, was he coughing like this? Cough, cough.” The range of emotions I went through that week was extreme. I had two days of intense anger. I spoke angry words to my husband when I didn’t think H was listening. Not at or about anyone in particular, but at the situation and the uncertainty it created. H told me he doesn’t like it when I’m angry. I guess he was listening. The anger was then replaced by a sadness which has stayed with me and hasn’t yet started to lift.

The outpouring of love for my dad was immense. He was Chief Clerk of the Supreme Court in Upstate NY for many years. He was in the army for many more years and had retired in the rank of Major. He was on local political committees, he was Town Councilman, he was connected, he was honoured and he was loved. The outpouring of messages written by my dad’s friends and colleagues was so touching and incredibly emotional. Stand down Major, we’ll take it from here.

My stepmother decided to postpone the wake and the funeral until after Halloween so my children and other children in the family wouldn’t have to miss it. It was one lovely, fun night for myself and the children in the middle of such sadness and for that I am so grateful. We dressed up, waited for darkness to fall and went trick or treating on the same road, at the same houses that I visited on Halloween as a child. Some of them were the childhood homes of my childhood friends. A bittersweet reminder of how time moves on and things change, but lovely nonetheless.

The wake was hard. Incredibly hard. Close family members went in first to have some time with my dad before the crowds arrived. I carried Baby I and H held his daddy’s hand. Baby I saw her Grandpa first, lying in his open casket and her face lit up and she waved at him. She waved as she had always done, as if he might wave back. The last remaining pieces of my heart shattered in that moment. H went up to his Grandpa’s casket and looked. He didn’t cry or show much emotion but I asked him to tell Grandpa that he loves him and he did. And I know he meant it, he really did.

The next four hours were spent standing by my father’s body while mourning well wishers gave their condolences. Thankfully the funeral home had a play room where the children could play and be noisy and be away from the intense atmosphere of the wake, but that meant that I stood without my husband at a time when I needed him most. The number of people that came to say goodbye and wish my dad well on his journey was overwhelming and beautiful at the same time. I knew my dad knew a lot of people and was well liked, but the exceptional love for him was beyond anything I could have imagined.

Halfway through the wake I went to the playroom to check on the children and found them both fast asleep along with my husband. They were so peaceful in that moment, my little angels. They had been so good and they were exhausted.

The next day was the funeral, which again was stunning in its beauty and devastating in it’s sadness in equal measure. H sat so nicely in between me and his Nana and Baby I sat quietly on my lap. It’s as if they knew what Mummy needed in that moment. H had his Magna-doodle and was busily drawing during the mass. I looked down and saw that he had drawn a perfect likeness of a body in a coffin. Even the folds of silk in the casket around my dad were perfectly drawn.

My dad had a full military burial, complete with a flag folding ceremony and Taps played on a bugle. H stood, completely silent, so good, so well behaved. He placed a flower on his Grandpa’s coffin and I was so proud of him.

The rest of the week was a blur. At my dad’s house it still felt as if maybe, just maybe, my dad might be upstairs in bed and he might come down at any moment. Surprise! I’m still here! But, of course, that didn’t happen. Leaving was so incredibly hard. It felt so final. This was the last visit to NY where I would ever see my dad. I wasn’t ready for that but it wasn’t up to me, was it?

It has been a rollercoaster of emotions for me since we got back. H went back to school and I felt happy that he would regain the stability and routine which we had so sorely missed, but I am finding it hard to make small talk about mundane things with the other school mums. Who cares about the weather or baby sleep routines when my dad has died? I am finding it hard to relate and hard to engage. Instead of going to toddler playgroups, soft play and parent teacher groups, I have been keeping close to home. I have found interaction with people too hard and so have avoided it as much as possible. All my energy goes into being the kids’ mummy and trying as much as possible to make the holiday season fun for them.

But the holiday season has been particularly difficult. Thanksgiving and Christmas have always been very important to my dad and his favourite times of year. Every song reminds me of my dad, every ornament, every bite of festive food. My house holds so many memories of my dad. The bathroom cupboard still holds his toiletries – a testament of my hope that he would be well and able to visit us again. I can’t bear to throw them away. I notice that I am now sleeping better than I have been in the last year as before I was constantly checking my phone for news of my dad. But I am also much more tired. Stress has been doing strange things to my body – right before our trip to NY my gums became inflamed for no reason. And I have had aches and pains all over my body.

Kids have such a different way of showing their grief. Before my dad became ill, he gave H The Night Before Christmas storybook with a recording of my dad reading it. He also gave H a photo album with a recorded message. H has been carrying those around the house and listening to his Grandpa over and over. He has been asking more questions about death and life and religion (which is interesting as we have not, up to now, imposed any religion on the children, so his questions are all his own). And he has been telling me, “Mummy, Grandpa is still with us.”

It has only been a month. I am still in the early stages of grief. I am told that time will dull the pain, though it’s hard to see now. I am still haunted by my dad’s suffering and by his last moments and am still finding it hard to believe he is gone. But I know I will feel better someday and writing this is one step towards that. I am hoping starting to exercise again will be another and I may also speak with a bereavement councillor, but I am not ready for that yet. For now I take comfort in knowing that my dad knew he was loved and he loved us. And that will have to be enough.

4 thoughts on “A journey through grief: a daughter’s love

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