My Joyful Boy's Story

It was Monday the 28th of November. My Joyful Boy (MJB) and Joy-doubled (JD) were three months old.

Mummy and daddy woke up and fed the boys their milk, changed them, cuddled them then put them back in bed with a big kiss each as daddy went off to work. It was a lovely morning. MJB and JD were being so cute, smiling and wiggling happily on daddy's side of the bed. Later that morning Grandad came to help mummy give the boys their next bottles of milk.

Then he said to mummy, "shall I take the boys for a walk round the park so you can have a nice shower?"

"Yes please!" said mummy.

So they snuggled the boys up in their pushchair and off they went.

Grandad got to the park and noticed MJB had some milky dribble on his cheek so he wiped his face and picked him up. MJB seemed to be sleeping but sneezed and a little more milky sick came out his nose and mouth along with a tiny bit of blood. Grandad decided to take the boys straight back home but not long after, MJB sneezed again - again some milky sick with a little blood came out. Grandad called mummy and an ambulance and said "Come quick! MJB is not well!"

Mummy got straight in the car and drove quickly to the park. She found Grandad by the gate with MJB in his arms and JD still comfortable in the pushchair. MJB was floppy and his little face was grey.

Mummy told Grandad to put MJB on the seat next to her in the car so she could give him some help breathing. As she was giving him breaths, more sick came out but she knew she had to keep helping - giving him breaths and making his little heart pump.

Mummy and Grandad were so scared. Mummy screamed and Grandad prayed. Soon a helpful policeman arrived. He offered to help mummy to help MJB but she just wanted to keep doing it herself. Instead she asked him to put his coat on the floor so she could move MJB somewhere more flat and firm. It was a cold day but fortunately the ambulance arrived soon after. They carried MJB into the ambulance because his heart still needed help. Mummy went with him to the hospital. Grandad looked after JD and called Daddy at work to tell him to meet them there. He called Nana too, explained what had happened and said "Go to the hospital! Mummy needs you".

Everyone prayed the whole way there. When the ambulance arrived, lots and lots of people were waiting to help MJB. They put him on a special table and started to monitor his lungs and heart. "There's no pulse!" They said. "He needs help to breath."

They used special tubes and powerful medicine and eventually MJB's little heart proved just how strong it was and began to beat again. The doctor said "Very few babies could have survived as well as this one but he's still extremely poorly. Let's send him to a bigger hospital where they can give him special care."

Nana, Grandma, Uncle D and Grandad came to support mummy and daddy at the hospital because they were very shocked and very scared and didn't know what might happen. It helped to have people there to love and support them and keep praying with them. Everyone wanted for MJB to get better. So much. The nurse told mummy and daddy that MJB would have to be very strong to move to the bigger hospital. Thankfully, he was. And they went with him.

They moved him into a big room with a comfortable bed in the middle surrounded by sparkly machines. He still needed strong medicine to help his heart and lungs and their were lots of tubes going in and out of his little body. The nurses there were all very kind and spoke softly to MJB while keeping him comfortable. More of MJB's family turned up there that evening to support him to get better. The Doctor explained, "This baby is very poorly and he might run out of energy soon. His body would stop working then, even with all our help. But we will do our best to help him keep fighting."

Mummy, Daddy and some of MJB's other family stayed in the hospital overnight. It was so scary and very sad because everyone wanted to hold and cuddle MJB but they couldn't while all the machines were helping him. So instead they sang to him, kissed him, stroked his hair and held his hands. Everyone took it in turns to look after JD because he was too small to know what was happening and his cuddles gave them all great comfort.

The next day, the Doctor said, "This little boy is amazing! His heart is now working perfectly and his lungs are recovering well. He must be very strong." He explained how lucky it was that Grandad and Mummy knew what to do when he first became so poorly, otherwise he couldn't have made it this far. He couldn't explain what had happened to cause it though, agreeing to do everything they could to find out. Mummy, Daddy and the whole family were desperate to find out in case JD might get poorly too. The uncertainty was unbearable. But MJB's progress and JD's cuddles kept them going. Every hour more and more people told them that they were praying for MJB too and wanted to be helpful however they could. He was so incredibly loved.

That afternoon, MJB's body was strong enough to start moving again. He opened his beautiful eyes and could see his Daddy. They kept singing to MJB, kissing him and talking to him. The lovely nurses said that because his body had gotten better, Mummy and Daddy could hold and cuddle him. It was tricky because of all the tubes he still needed, but it was wonderful to have him back in their arms. He was even able to start having Mummy's milk through a small tube in his nose, like when he and JD were tiny new babies in neonatal care. MJB was making everyone so proud but it was still the scariest and most sad time his family ever faced because they knew if his brain had been damaged, it wouldn't be able to heal like the rest of his body had.

The next day, the doctors sent him for a scan to see if his brain was ok and look for any clues about why he'd gotten poorly so suddenly. Daddy went with him and stayed by his side the whole time. When the doctors saw the result, they said to Mummy and Daddy, "We're so sorry, but MJB's brain has been very hurt and won't recover." This was terrible news because it meant MJB could never feel, think or move in the same wonderful way he could before he suddenly became so unwell. Still nobody could explain why it had happened. But Mummy and Daddy knew that many miracles had happened so far to make MJB's body better again and they had faith that more miracles could still happen. Either way, the nurses said they could celebrate all the amazing progress he had made and all the love and joy he had given his family and friends so far.

So on Friday morning, MJB's room was full of friends and family - all there to show him love and celebrate his huge achievements. There were hundreds of photos and fairy lights and candles and beautiful music playing. It felt a little bit like heaven - so full of love. Except in heaven there's no sadness and they were all so sad because they missed MJB as he was.

God gave Mummy and Daddy peace and assured them that even if MJB's brain couldn't get better, he wouldn't suffer and would be taken good care of with God in heaven until they could all be there together again. It helped to know so many people were praying too.

Later that day, the doctors said, "We don't know how well MJB will be able to manage without the machine that is supporting his breathing, but if we keep using it much longer it might start to hurt his body rather than help it. We must let him try to breath on his own. But if his brain can't still do that I'm afraid his body will die." Everyone who loved MJB was heartbroken and cried more than ever before. But somehow God still gave them peace and comfort.

Mummy and Daddy told the doctors, "After all the miraculous healing that MJB's body has done, we would be so sad to see his amazing strength wasted if it could help someone else. The doctor suggested that if MJB died and no longer needed his body, parts of it could be used to answer the prayers of other very sick people who needed help to live. "MJB has already made us so proud" they said, "this is what our little hero would want." This meant that there were lots of tests and paperwork to be done first and that day seemed to go very slowly. In the meantime, Mummy and daddy cuddled MJB on his special bed and read stories to him - including his favourite, Winnie the Pooh. The wonderful nurses still did all they could to be kind and helpful.

Eventually the doctors said, "We are ready to see if MJB can breath without this machine." They all hoped for a miracle and kept praying that he would get completely better. But if not, they explained that two other families were also praying for their own miracles and MJB could help them.

A beautiful room was made with a comfy sofa facing all MJB's gorgeous photos, lit with the fairy lights and candles from his party earlier that day. Mummy stayed on the bed, cuddling MJB while Daddy helped push it there. Once there, the kind nurse took the breathing tube out of MJB's mouth and peeled the plasters off his face so mummy and daddy could finally kiss his perfect little mouth. As they held him, kissed him and sang to him, they prayed the whole time for him to get better. At first his body tried to breath for itself but after a short while it became very tired because his damaged brain had to work too hard. Gently and peacefully his breathing started to slow down, then his heart grew tired too. It was the hardest thing they had ever had to do, but Mummy and Daddy just held him tight and sang to him as he stopped fighting to stay alive.

The nurse returned to the room and said that if MJB could help the other families praying for a miracle, Mummy and Daddy would have to say goodbye, but could wait back in his room. Mummy wanted to wash and dress him one last time, like she had done for all the patients that had died while she was looking after them as their nurse. He looked perfect and peaceful. Beautiful and flawless. And even though they were devastated because of how much they loved and would miss him, they weren't scared because they trusted God's promise. They knew MJB was safe and completely joyful with God in heaven. And because time in heaven is different to time on earth, they knew that even though they would miss him, he wouldn't miss them. They were already altogether again with him.

But here, there are still many more chapters of the story to go. And despite the sadness, there is so much to be grateful for: all our wonderful memories of MJB, our pride in his incredible achievements, his beautiful brother JD - who relentlessly brings joy and hope to those who love him too. Also, all the compassion, love and support that this terrible tragedy has inspired.

The best thing of all is knowing that this sadness won't last forever, because our faith allows us to know the ending of the story: together again, forever joyful. No more hurt, only love.

For that reason we praise God.