Coping with Grief on Daniel’s 19th Birthday

May 18, 2022

Recently I met someone I hadn’t seen for a while. He remarked that I looked much better than I had on our previous encounter. He asked if I was coping better? Getting back to normal? 
It’s hard to know what to say to someone when their child dies. 
I gave my usual answer, “I’m ok, trying to carry on and keep busy. Plodding along.”
The true answer to how I am doing, how my decimated family is doing, is very different to the answer I usually give. 
Every day, I wake up in the room my son died in and think, how the hell can this have happened to my wonderful boy? 
Is this real? 
Daniel was a a boy who had never been ill in his life. He was so happy, so excited about the future. Why did the universe do this to my son? Why him? 
I now understand our family is not the only one to deal with such heartbreak. My eyes have been opened. I don’t expect sympathy. So many are suffering in this world. I am a member of a big club. The worst club. 
Like many people I get up, put the mask of normality on and try to function. I try to have moments of laughter in the day because being consumed by sadness and crying every day for the past 2 years is exhausting. 
Sometimes I put the all consuming thoughts of Daniel in a box in my head and close it tightly. It tries to burst open and I push it shut. I can’t cope with the pain and sadness. I feel so guilty for doing this. I am a bad mother for wanting to forget about my son. 
I can’t really remember what normal feels like. I am a shadow of the person I was. A ghost like creature. A glimmer of who I was. Not even half a person. 
I used to laugh so much. 
I remember the day I began to fade away. The day Daniel was diagnosed with terminal cancer and given months to live. Told there was no treatment for him. My beautiful boy just wanted to go home immediately,
“Just take me home mum.”
We went home. 
I helped him into bed and he asked me to lie down with him. He was scared and didn’t want to be alone. As he slept I cried as silently as possible while researching possible treatments for his cancer. 
There were none. 
As each week passed and Daniel lost more function I felt myself fade further. I kept going because my son needed me but inside I felt like I was dying. I felt so selfish thinking anything about myself. I had to keep going for my boy. There was no time for self-pity. 
Daniel was so brave. The bravest person I have ever met. I am so proud he was my son. 
Is my son.
The day Daniel lost all mobility we had been trying to take him to the toilet. He fell and we couldn’t get him back up. We had an emergency team who came and got him into the hospital bed in my bedroom. He went into that bed for the first time that day. He never left the bed until the evening he died, 55 days later. 
Watching your child die destroys a parent. 
No way back. 
30th November 2020 will forever be imprinted in my mind. The evening my boy took his last breath. 
When the undertaker came to take Daniel away, I hid upstairs. I didn’t want to remember him leaving the home he loved that way. I now feel guilt at that. I should have watched him leave. Another part of me destroyed. These experiences have changed me, broken my heart into a million pieces. Every day I feel weighed down so heavily it can be impossible to function. The weight of grief has never lessened in the 2 years since Daniel was diagnosed but I am becoming better at carrying the grief and putting on the mask of normality. 
I have another child whom I love so much. My beautiful Saul. I keep going for him. He has lost everything. I am no longer the mother I was and I feel worthless for failing him. He has carried me during my blackest days. He is the kindest, most loving boy. If I didn’t have him I don’t think I would have the will or strength of character to keep going. He is my saviour on the black days. 
“Mum please get up. Don’t stay in bed today. “
“Please mum, I need you. “
Saul turned 16, just 3 days before his brother died. I can’t explain what my youngest son has had to deal with. 
I love him with all my heart. 
I have 2 children. One I need to live for, one I want to be dead with. 
Often I just want the pain of grief and loss to end. Being sad, living without my wonderful Daniel is a hard way to live. Sometimes I just don’t want to do it anymore. I’m so tired all the time. 
As I try to go to sleep at night or wake up from a restless sleep in the morning, I remember Daniel’s last days in my bedroom. The place he died. I sometimes imagine I can hear him breathing or calling out for me,
“Mum, can I come into your bed?”
“Mum, hold my hand. Lie beside me.“
We couldn’t move him during the last months of his life. We positioned his hospital bed beside our bed. I had to explain to him I was always holding his hand because he had lost all feeling. 
There weren’t enough days caring for him, holding him tight. Feeding him, bathing him and being a mum to him. I had so little time with my first born child. The special boy I waited my whole life for. 
“Mum am I dying?”
I can still hear those words and I can still remember wiping the tears from his beautiful face. 
Not having the power to make my child better. We both cried over this many times. 
I wish he was still here holding my hand and making me happy. The person I used to be. 
This is the grief of losing your child. You never get over it. Every moment of their illness and death plays over and over in your head. 
People love to judge others. Offer advice. Tell them how their grief will get easier. For some people it doesn’t. It becomes unbearable and they take the route out. I can understand this. We should never judge anyone in this situation. 
Unless you have lost a child you can never fully understand and have no right to pass comment. Please never judge a grieving parent or “bright side” them. 
There is no bright side to the death of a child. 
Recently I read an article about grief and the death of a grieving parent. The writer commented that “they had never got over the death of their child”. I personally feel that is a given. Can anyone ever “get over” the death of their child? I don’t think it’s possible. You learn how to navigate and carry the grief. That’s how I feel today at least. I would never speak for another grieving parent or expect them to speak for me. Every journey is unique. Every voice is different. 
Outwardly I am coping. I get up, carry on and quietly go about my life. My husband, my son and my dog need me. I need to carry on and give my youngest son the love and support he needs. 
Inside I am a heartbroken mother who has lost the love of her life and I am forever changed by it. I am anxious, scared and feel alone most of the time. I am trying to swim. The current is strong and tries to pull me under. Some days I am a strong swimmer. 
Today I carry on. Nothing in life is guaranteed. I know this too well. I am grateful for each day of life that Daniel was so desperate to live. 
I don’t expect pity, just a little patience. Some friends who will stick by me. Those ones are pretty incredible because it’s hard to be around a grieving parent. 
We should never give up on anyone but we do. 
More than anything I hope my child is never forgotten. I want his name continually spoken out loud. This is really all I want. 
Please never forget my child. 
Daniel Joshua Caplan. 
17 years of incredible life. 
He was and will always be too amazing to be forgotten. 
My darling Daniel,
You are amazing 
and strong
and brave
and wonderful. 
Loved more than could ever be imagined. 
I miss everything about you my boy. 
Wherever you are, I am sending you every part of my heart on your 19th birthday.
I will love you forever Daniel 💛💫