Eight years ago, at just 18-months-old, beautiful blonde haired and blue eyed Jamie Benjamin McGregor went to sleep and never woke up.
Shocked, devastated and heartbroken, Jamie's parents Jenny and Ben felt their world crumble around them. If it wasn't for a Red Nose counsellor who appeared by their side at the hospital and quickly became part of the family, Jenny is not sure how they would have navigated the days, months and years that followed.
As Red Nose celebrates the 30th anniversary of Red Nose Day this Friday June 29, Jenny shares Jamie's story and explains why she has released an album of an album of songs called "Love and Let Go", for other bereaved parents. Jenny's album was released earlier this year, with all proceeds going directly to Red Nose because, sadly, Jenny knows just how vital the work is that they do.
Jamie was such a charmer
Every parent thinks their child is special, it's only natural. But some kids just have that x-factor and Jamie was of them.
"I don't know if it's because somehow he knew he was only going to be here for a short time," says Jenny of her first born child. "But he was just always so happy and relaxed. Nothing ever bothered him, he was so lovely to be around."
Jenny recalls fondly how much people loved Jamie; "He charmed everyone. Old ladies at the shops in particular couldn't help but adore him.
"He loved Thomas the Tank Engine, and he loved the packaging from toys – even more than the toys themselves," Jenny laughs. "And he loved books. It was not uncommon to go in an hour after bedtime and find him sitting happily in his cot, flipping through the pages of a book."
“I missed that so much after he was gone,”
It didn't much to make little Jamie dance either, Jenny recalls any kind of music, even the theme tune for the news would get his little wriggling.
"He loved cuddles," says Jenny. "I missed that so much after he was gone. His little body coming in to wriggle in beside me and just cuddle."
“I didn’t know that would be his last day here,”
The months leading up to Jamie's passing had been a strange time for the McGregor family. Jenny's parents lived overseas, and Ben's parents had passed away, so when Jamie's aunty needed help, it was no question that Jenny and Ben would be there to lend their support.
Jamie had a new baby cousin, and sadly Jamie's aunty faced the news that her new baby had a genetic heart condition and was very ill. While Jenny and Ben took turns staying by Jamie's aunt's side at the ICU at Sydney Children's hospital, little Jamie was content to have them care for him with the help of family friends who stepped in when needed.
"We were very much wrapped up in the situation at the hospital during that time," says Jenny.
On Jamie's last day, Jenny took him to play in a park during the morning, where they sat, played and ate watermelon.
"I dropped him off at a friend's house after that so I could get back to the hospital," explains Jenny. "He did seem super tired that day, and his nappy's smelt terrible, but other than that I had no idea that anything was out of the ordinary.
"It was his nap-time when I dropped him off, so I settled him into his port-a-cot with a story. I told him it was time to go to sleep and that I'd see him soon."
Jamie spent the rest of the day playing with the children in the home until Ben came to pick him up later.
The family friends had also noticed that Jamie seemed tired, but again, weren't overly worried.
“I got the call to come to the hospital straight away,”
Ben took Jamie home, also noting that he was quite tired. Ben got Jamie settled into bed with another story and left the room to have some dinner.
It was 15 minutes later that Ben returned to the room and found his sweet little boy face-down in his cot, not breathing.
Ben called an ambulance and performed CPR. Calling Jenny with the terrible news that Jamie's heart had stopped and that they were on their way to hospital.
"I had to drive myself to the other hospital and it was horrible," says Jenny. "I knew it was bad when I screeched into the ambulance bay and nobody stopped me from parking there.
"There were two ambulance officers standing there who had obviously been expecting me because they rushed me straight through to the room where Jamie was.
"It was horrific, I can't think of another word to describe it. The room was full of panic, there must have been 10 different specialists working on his tiny body, I couldn't even see him, just his little feet.
"I made my way up to his face which was covered in a mask and tubes. Ben and I were in bits, beside ourselves with shock and grief at what was happening," says Jenny.
"At one point they had revived a pulse and there was talk of air-lifting him to another hospital, which is when we were confronted with the horrific choice of whether or not to try and revive him, given how long he'd been without breath and the reality of what that meant for his future."
But by 11:00pm that choice was no longer an option. Jamie was gone.
“Mary Beth, our Red Nose Counsellor, saved us,”
Red Nose is so much more than research and education, although that is so important. Red Nose also offers a completely free support and counselling service to bereaved parents when they need it most.
"Mary Beth appeared at the hospital and was by our side through those horrific days and all the horrible events that followed, from the morgue visit, the funeral and my following pregnancies, helping us navigate the grief that would have otherwise swallowed us whole," says Jenny.
"She really very quickly became a mother figure and part of the family. There was nothing that was too much for her, she is incredible.
"Our sessions went from once a week, to once a month and she's still there if we need, offering support and helping us to honour Jamie's life.
"To have that service offered for free at a time when you have so many other bills, and stresses to deal with. Of course, neither of us could work, and we had no parents here, it was invaluable to know that Red Nose was just there."
"I can't speak highly enough of red nose and the work they do. The research is so valuable. I'd give anything to have my son back, so to know they are working so hard to make sure other families don't have to go through what we went through is … just .. there are no words."
“You want to feel like your child mattered”
Red Nose also offers memorial days for those children who are no longer here.
"When you're a parent that's lost a child, you want to feel like your child mattered and that they're remembered," says Jenny.
"That's why the memorial days are so special. Because after a while everything else dies down, people don't always acknowledge that your child was here, it's so easy to forget and that's gut wrenching.'
"I meet new people who notice my other kids and assume that's it, and I don't know always know what to say. But the memorial days validate Jamie's life, and that's priceless."
How you can help
Jenny, who now works as a clown doctor for Sydney hospitals, quickly realised there were other people in a similar situation as her family. Since then Jenny tirelessly raised more than $25,000 through a Kickstarter campaign so she could write, record and produce an album of songs called "Love and Let Go", for other bereaved parents.
The album was released earlier this year, with all proceeds going directly to Red Nose. Parents who have lost a child have access to the album for free. It is also available to their extended families who have also been affected.
Jenny also performs at memorials and services and other special remembrance events for bereaved families, knowing just how important they are.
To donate, visit rednoseday.com.au