To my dearest Johnathan, on my first Christmas without you

By Pieter van Zyl
25 December 2016

Heartbroken mom Johleen Bezuidenhout wanted to pen a letter to her little fighter.

She struggles to find the words but she so badly wants to write a letter to her beloved Johnathan, telling him how much they will miss him this Christmas. 

But this Christmas they’re going to light candles all over the house in memory of him. They left flowers at the spot in Bluewater Bay, near Port Elizabeth, where they scattered some of his ashes.

“The last of his ashes we will scatter at Oyster Bay, which we’re visiting this holiday, and we will also throw flowers into the sea,” says Johnathan’s mom, Johleen Bezuidenhout.

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Johnathan died in hospital more than three months ago (YOU, 1 September 2016) but is still part of his family’s lives.

“Granny Doreen and Grandpa Johan Bezuidenhout sometimes say, ‘Ai, Johnathan is very busy in our house.’

"Sometimes it gets so bad they don’t know how to handle the situation, because in body he’s no longer here  but he is in spirit. One morning just days after Johnathan died Granny Doreen was doing her make-up when the sun caught the door to the bedroom.

"In the sunlight on the wood she could see Johnathan’s knobbly hands. How long had they been there?” Johleen asks.

Her partner, Quintin Carter, and his two daughters, played a big role in Johnathan’s life. They were the only father he had known and his sisters.

Since his death Johleen and Quintin have come into contact with a family in Gauteng whose son was born with the same syndrome as Johnathan. “For all the years since he was born I thought he was the only one in the country with the syndrome,” Johleen says.

Nine-year-old Geodrick Tree Adams was diagnosed with Hunter’s Syndrome 2, a disease similar to Jonathan’s. Geodrick’s family contacted Johleen through YOU magazine. Johleen donated to them a pram and a machine that was used to suck mucous from Johanthan’s throat.

“It meant so much to me to be able to help this family,” Johleen says. “Johnathan is still touching people’s lives even though he’s no longer with us. I really thought he was the only person with this sort of syndrome in South Africa.”

It was difficult for doctors to decide which rare genetic disease Johnathan was suffering from. First they suspected it was Simons Disease, which causes abnormal bone and cartilage growth.

Later the diagnosis was Murk-Jansen Type 2 metaphyseal chondrodysplasia. This would explain why his limbs were deformed, why he couldn’t breathe through his nose, eat normally or speak.

Jonathan Bezuidenhout, who has a rare genetic condition, celebrates his 12th birthday with his mom, Johleen Bezuidenhout, and her partner Quintin Carter. PHOTO: Misha Jordaan Johnathan Bezuidenhout, who has a rare genetic condition, celebrates his 12th birthday with his mom, Johleen Bezuidenhout, and her partner Quintin Carter. PHOTO: Misha Jordaan

By the time he was 12 doctors thought he’d been born with mucopolysaccharidosis type 1, which occurs in one in a million births. Since suffering a stroke more than a year ago Jonathan had had difficulty eating and drinking and lost weight.

“The family with the child with the same syndrome as Johnathan suffered from is in regular contact with me,” Johleen says. “I hope to meet them one day because we know what lies ahead for that child and it breaks my heart.

“If we see you again you must sign Johnathan’s rugby ball like all the people who were important in his life did.”

Here is Johleen’’s letter to Johnathan:

“My Johnathan; the brightest star up there,

On 11 August 2016 at 9:45 in the morning you, my little Superman, left us. It was one big shock, but I know you’d fought for so long and I could see you were tired. Your breathing was soft and every now and then you gasped for breath.

I, your Mommy, could see you were waiting for my permission to surrender to Jesus, but how do I live with my conscience? Will you ever be able to forgive me for deciding to let you go?

Four hours of struggling to get drips into your thin, emaciated body with no hope that anything would stay in; but the staff of St George’s Hospital’s children’s ward tried everything.

The monitors kept going off and I was very uneasy. Your Granny and I held your hand tight and sang to you. You gave us  a last look with your big, brown eyes and a last tear rolled down your cheek.

With a last breath your heart stopped beating. We know your angels and Jesus were standing beside your bed, ready to take you.

For the past three months there has been one big emptiness in the house. Sometimes I can still hear your sounds from the bedroom. After the strict care we had to give you it’s now dificult to get used to the new daily routine.

Every now and then Megan and Zoe [Quintins daughters] say life isn’t easy without you, their “brother”. Especially this Christmas that you’re not with us.

Every morning I still go to your cupboards and I realise that for the first time in 12 years you won’t celebrate the festive season with us.

This time of year is so difficult for me. I cry every day when I walk around in the shops and hear Christmas carols being played and people saying, “What do you want for Christmas?”

A present I will never have again because he’s with Jesus this year and every year that lies ahead. His name is Johnathan. He will always be the greatest present Jesus could give me.

But we’re not leaving you out on Christmas, because you brought so much joy to my heart and the hearts of everyone all over the world. We must be grateful and motivated and not lose hope, no matter how hard it is. If it’s not our time it’s not our time.

Money can always replace earthly things but we as people can’t replace our lives with money. We must enjoy every second because we don’t know what tomorrow holds in store. We dedicate the Christmas song, Christmas In Heaven, to you, our Johnathan.

I want to give this song to everyone who has to spend the year without their loved ones. I now understand the pain that others are also feeling. It will be a day of much pain, but then I’ll ask how I’ll get through the day.

Then I remind myself that Johnthan would have wanted us to get through the days with gratitude. He couldn’t speak but this is what he would have said, “Take heart”.

Quintin Carter, the father he got to know near the end, wants to say to you, “Kwagga, I miss you a lot, but we’ll all walk this road and will meet again in a godly place. Like you we’re all destined to be God’’s angels one day.

“In their time everyone will be picked and continue to grow in God’s garden. Amen.”

Jonathan’s message to us all is: Be grateful for every moment with your loved ones and always think of others as God wants you to do.”

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