A mother’s never ending pain: Living with the death of a child

Having to bury a child is every parent’s worst nightmare. A child’s death defies the life cycle, but for some parents it’s a sad reality.

This summer, SheHub spoke with three mothers brave enough to share their stories of love and loss. Each have lost their children at different ages and in different circumstances, but none of their suffering is no less painful than the others’. Meet Stephney, Shakira and Zina.

Stephney, from New Zealand, mother of Zoey

When you lose a child no matter what age they are you go through life like a different version of yourself. I lost Zoey when I was 20 weeks pregnant and I had a forced labour to bring her into the world. That day forever plays through in my head especially at night.

I had to have emergency surgery as the placenta got stuck and it was touch and go as to whether I was going to be okay.

I remember being wheeled into the surgery and just seeing doctors and nurses rushing around everywhere, I closed my eyes thinking that if I just keep them closed when I open them and it will have all just been a nightmare!

When people ask, “How many children do you have or do you just have the two?”, my heart screams no but my head always answers as I can’t cope with the follow up questions. I don’t think that you ever move on from it as a part of you is not with you and you forever question yourself as to why and is there something I could have done?

Every year on Zoey’s birthday we go to the beach with balloons for her and always have a bottle of bubbles. We then go out for dinner as we do on all of our birthdays. Our children talk about her often which for me is huge because she will always be a part of our lives.

What’s hard for me is children with the same name or the same age that Zoey would be, I instantly go what would she be doing now? What she would be like? Whose personality she would have?

They say there are five stages of grief and acceptance is one of them, but for me that’s one thing I can never do. I can’t bear to have fresh flowers in the house because at the time of her death, flowers came from everywhere.

I remember my mother-in-law had to go and buy more vases to put them in and I lost it and said, “Why bother they just die!”

In the end I asked her to give them away because it was too much. Even now five and a half years on I still don’t like bouquets of flowers.

Through the first few months following her death, I can only describe it as I was feeling like I was outside of my body, looking down on what was going on, when people were talking to me, I couldn’t hear them, I didn’t want to hear them I wanted to lock myself back in the hospital room with Zoey and hold her.

As time goes by I wouldn’t say it gets easier it’s just different. You learn to handle situations differently, you learn to avoid the triggers that are painful.

Life after losing a child feels like you’re on a boat in the middle of the ocean and every now again along comes a storm and you have to hold on with all that you have until the storm settles and then it’s okay again for a while.

Shakira, from Birmingham, UK, mother of Neehari

Neehari was a surprise. I know people say that and it sounds stupid because sex always equals a potential pregnancy, but I’d had an IUD inserted and was convinced that, with a more than 99% effectiveness rate, another pregnancy (I already had a boy and a girl) wasn’t on the cards.

Despite this, I was at peace with being pregnant. It was an easy pregnancy. Labour wasn’t too bad either. Actually, I stayed home for most of it and arrived at the hospital eight centimetres dilated and begging for an epidural that I was three centimetres too late for.

Neehari was born on Sunday, May 25, 2003. The following day was a holiday and it was just him and I because everyone else was either running the Bermuda Day race or watching it. It rained that year too and I can’t say I felt bad about it (literally) raining on everyone’s parade while I was stuck in hospital! He was a bundle of sunshine though.

He was the most chill baby I’d had up to that point – sleeping through the night at two weeks old and hardly crying. He was the missing piece to a puzzle that I thought was already complete. A bonus. A gift. A treasure.

He was 22 months when he fell and hit his head and started seizing. We rushed him to the fire station and they called the ambulance. He had two more seizures and I was convinced that we were going to lose him. I prayed to God for more time (just 10 more years even) but a CAT scan and EEG revealed no lasting damage. That day profoundly changed me. It changed how I parented and raised my children. They were young, but I always told them that tomorrow wasn’t promised; that they shouldn’t fight because they could lose each other in an instant. I

I couldn’t know how true those words would one day be.

The summer of 2013 was a good one. I remember we went to a water park and the children had such a great time. Nari’s eyes were bloodshot from the water but it was one of the best days ever. And the last really good memory before he got diagnosed.

When he went back to school that September, he started having chest pains and shortness of breath. My oldest two had asthma so I didn’t question when they prescribed him an asthma pump. Nor did I think anything when a few weeks later they said it wasn’t working and prescribed him a preventer. I started to get worried when that didn’t work either.

One Saturday afternoon we ended up at the hospital…

My heart was beating out of my chest as they ran test after test to find out why his lungs were filled with fluid. They went from “possibly pneumonia” to “we found tumours” in a matter of hours and my beautiful, vibrant son was suddenly very sick and admitted to HDU (a ward a step down from ICU but still for children who need round the clock care).

The next 18 months consisted of monthly hospital stays, chemo, radiation, countless trips to the hospital for possible infection, home visits from nurses, good news, bad news, and finally the worse news you can ever imagine—being told our son had six months to live.

I spent 12 hours a day researching cancer cures. Anything that would remove the beast that was growing in his body. Some were legal, and some were very much illegal. There was nothing that we didn’t try.

It was obvious to me that we were fighting a losing battle. My son, who had been nicknamed Smiler by a teacher in Bermuda, never smiled anymore. The light had left his eyes too. And it was then that I prayed as hard as I did 10 years ago when he had his head injury. This time I prayed for an end to his suffering.

I know all the mothers reading this will know what I mean when I say that there is nothing that you wouldn’t do for your children. For me that meant allowing him to let go. I do believe that Nari held on for me; he definitely held on longer than he physically should have been able to. I also know he waited until the day after my birthday so that I would never have to associate my birthday with the day he left this earth. He was thoughtful and kind and even facing death.

The next two weeks of planning his service was a blur. I knew what I wanted and I went about it in a very mechanical way. The day of his service was a blur. It was almost as if I was floating overhead. I was there but not really there. The next six months were a blur. Everyone commented on how strong I was, but what they saw as strength was really survival.

I think it was after the first year when it really started to sink it. That’s when grief hit me like a ton of bricks. I was seeing a grief counsellor weekly and it had been suggested to me to start anti-depressants, but I refused. It wasn’t until my husband dragged me to the GP that I had to admit that I wasn’t okay and that I hadn’t been for a long time. Most importantly, I learned that it’s okay not to be okay.

I poured my heart out to her. How guilty I felt for not being able to save him. How scared I was of losing another child. And how I thought that suicide was the answer to all those fears. I cried my eyes out to this doctor, this fellow woman, this fellow mom and at the end she said something that sticks with me to this day: “You deserve to be happy”.

You see up until then, I thought that to be happy was to dishonour Nari. To smile was to forget his smile. And to live was to leave him behind. I have learned that grief and happiness CAN co-exist. I can miss him and still be so grateful for my living children. I can cry for him and turn around and smile and laugh. It is two sides of the same coin.

My counsellor likened grief to a coat. Some days it is real heavy, other days it’s lightweight and you can barely feel it, but it’s always there.

Always.

If I could change anything about my 12 years with Neehari, I wouldn’t change one single thing. The love I have for him hasn’t changed. He’s still my son; he’ll always be my son. And I’m still his mom. A grieving mom, a battered mom, an aged mom, but still a grateful mom to have been blessed with such an amazing and brave child.

Zina, from Bermuda, mother of Alanzo

On Sunday May 3, 2015, I lost a piece of my heart, my soul, my spirit as my 18-year-old son Alanzo Eugene “AJ” Parsons died while playing football in Connecticut. He was away in school living with his father. AJ died of a heart condition called “hypertrophic cardiomyopathy” which was undetected. He didn’t have any symptoms, wasn’t sick, and there was nothing to indicate that he had an underlying heart condition.

That same night he died, I found out that his father has the same heart condition…

The only consolation is that my “Juicy” died while doing what he loved, playing football. I am so thankful that I spoke to him the afternoon that he died.

AJ was due home less than two weeks later for his summer vacation and we couldn’t wait until he was home as we missed each other dearly. We often spoke of who missed each other more. I can’t forget how he couldn’t make up his mind on which of his favourite meals that I was cooking for his first night back home!

We spoke of the plans that we made for his brother En’Rikae, himself and I. One of them was to have me running on the tracks (the boy lost his mind lol) but I was going to do it as we talked of me losing weight and now…

For months and months, I replayed that Sunday night over and over in my head, from the very first phone call to the last one.

As soon as THAT time appeared, the night played out…who I called, who came over, who was helping me prepare me to travel abroad, the cries, the screams, his brother, his girlfriend, his cousins, his friends.
It got to a point where I hated Sundays, hated that time of the evening. Sometimes I would try and sleep the time away, at times it worked and other times, yup you guessed it!!

My Juicy left me in January 2015 alive and was returned to me in May 2015 dead, frozen in a box!! Frozen in a box!! On Mother’s Day!!!

I didn’t and couldn’t say goody-bye to my baby!! I couldn’t touch him, kiss him, hold him…he had to be cleaned up first and on the day of his funeral, I kissed him and told him good-bye even then it was weird. Different. His body was so stiff, hard…

Mother’s Day will never be the same for me anymore nor will any of the birthdays, holiday celebrations, simple family get togethers etc. En’Rikae and I do our best, but it’s not the same without Alanzo.
My family will forever be broken and incomplete…But always and forever “ZiEnAl”!

I think about my Juicy everyday and at times it’s still so surreal, like I can’t believe that he is really dead!! I also get very angy because I no longer have my son, yet these young men are out here killing each other like it means nothing.

The memories are hard at times. It hurts to think about my Juicy, it hurts to cry, hurts to look at pictures, hurts to go talk with him at his grave, yet at other times, the memories make me smile at him, laugh at the stupid things he did, pranks he pulled and then JOY, JOY as I was thankful that I had an amazing 18 years with him!

How he touched so many lives during his short time here on earth…

It’s a never ending rollercoaster of emotions, some good days, some bad days and some days I just function because I have to.