Meletilini Logan first formed a strong bond with Jeannette Queensell-Logan when she was a few months old, however she feared the tiny baby wouldn’t make it through the night. Although she’d met Jeannette a few times previous to this, this was the first time Mele had stayed up all night with her.
“I was very nervous being a mother myself. Babies instinctively know their own mothers and crave that contact. But with Jeannette and me, it was different. The first night was beyond mother and daughter bonding to us. ”
Born in 2014 to Jackie, who is a close member of the Logan’s extended family, late that year Jeannette was diagnosed with (1)D-transposition of great arteries with large multiple ventricular septal defects with double inlet single ventricle. On Christmas Eve there was a family meeting at Starship Hospital, where the cardiology team informed them that with her medical challenges, they couldn’t do anything more for her, and that she would have about 3 months to live.
“The meeting started when staff were leaving to prepare for their Christmas celebrations, and here we are waiting for the worst news. I will never ever forget that day no matter what,” she says, recalling that when they walked into the room, just looking at the cardiologists face set her heart pounding and tears flowing.
“He said, I am sorry, I am sorry. Jeannette is not in a good position for any treatment/ operation.”
She also remembers that the cardiology team didn’t know why she was born alive at the first place, and how she had survived this long. After the meeting, they all sat in the waiting area, still trying to come to terms with what had been said. The baby’s 18 year old single mother was not in a position to able to provide the best outcomes for her, so the Logan family adopted the little girl to give her a better chance within their rock solid family.
Jeannette was legally adopted in May 2015. She has now lived in Auckland since June 2015 with her adopted parents and five siblings, fighting through many surgical procedures and cardiac arrests. The family work together with Palliative Care, Starship and The Wilson Home, and are on intimate terms with the emergency ward, PICU, Heart Ward, General Ward and Neurology Ward.
“I have been away at least 6 months each year from work to be with Jeannette in the hospital. I’ve lost count of how many times I’ve called my family here in New Zealand and from Tonga to come over to say their final goodbyes for Jeannette. Her biological whanau have travelled from Tonga too and we’ve undergone funeral planning several times for her.”
Despite all this, Mele says Jeannette is “a very happy girl and easy going, who makes the most of everything. She hardly complains and she has a strong will to fight back no matter what.”
Balancing her job with being Jeannette’s primary carer has been difficult for Mele.
“I have been away a lot from work. Six months in 2015, seven months in 2016, four months last year. My husband has a few days off here and there, but he has to work for our mortgage, pay the bills and ensure the survival of the family. I’ve had to cut down to six hours a day and whenever Jeannette is unwell, she takes absolute priority, so I’ll take time off from work straight away.”
She wouldn’t be able to do this if it weren’t for her manager of the government department she works in, who Mele says treats staff like family members, and who always makes time to talk about anything.
“I am so grateful that I have her as a manager. Because most carers that I know have lost their jobs due to taking too much time away from work. I will never ever forget her support no matter what. To have this job and still being able to work there after four years from having Jeannette, makes a huge difference financially and morally for me and my family as a whole.”
Even with such a supportive manager, there are challenges.
'As a carer, you are at a disadvantage when it comes to even considering to apply for higher positions. You can’t put in the hours required, because when your disabled loved ones are sick, you will be away from work. And you’re working hard out to make up for time lost, but it’s still not good enough.’
She says she also wouldn’t survive without the support of her other children. Jeannette is on a feeding tube four times a day and takes medication three times a day. The children help with these, as well as doing nappy changes, brushing her hair, pushing her wheelchair, playing with her, and giving Mele time out.
“My children are able to run her feed and change tubes/feed, also change the machine, my two older kids know how to draw her medication with all of them knowing when to give it to her, my older daughter can change her nappy when I am not home or even If I’m home.“
Accessing medical support has proved challenging, as the specialised places they go to are managed by different DHBs. Living out in West Auckland, they’re in part of the Waitemata DHB, but some of the specialised services are in Starship, which belongs to Auckland DHB. “Sometimes it’s like swimming in the ocean of no man's land. Luckily we’re not giving up the fight to get the best support for Jeannette.”
When seeking non-medical support, it wasn’t easy for the Logans to find out what services are out there. However, they started with one support service and have gradually formed networks that way. Every time they hear of a new support service, they’ll make contact and get to know them. With the challenges their family faces, the need for community is vital. They have family and friends who are also carers, some solo, others who care for a child or an adult. Whatever their individual situation, having people around who understand what it’s like to walk in their shoes has helped the Logans tremendously. Especially as most of the time, carers won’t ask for anything, says Mele. Whenever they’ve unexpectedly received surprises, they are rendered “emotional and speechless.”
“I have to say, they probably won't be able to show you how much that means for them,’ she says, referring to the constant state of exhaustion that is so common for a carer. “Visiting them at home or hospital and having a conversation, taking them for a coffee, taking the kids to the park or movies, to sports training or sport games, dropping them some dinner, it all goes a long way.”
As Jeannette grows bigger, her needs are also growing. They recently got a mobility van for Jeannette after 8 months of borrowing one. The next crucial support is a modified bathroom, as it’s proving harder to support her daily routines.
“At times I think that we can't survive as a family when Jeannette has so often been hospitalised for the last 3 years. However it’s brought us all so much closer together and means we appreciate the little things every single day. No matter how busy we are with work, with Jeannette’s ongoing appointments, the children with their school and sports, we still find time for more things to do or attend together, and we can't believe how much more resilient and stronger we are as a family.”
The whole family always makes the effort to attend church service, to take part in their extended family activities when they’re able to, and support other families and individuals when they can.
“Having Jeannette has opened my heart, and so my family and I are able to see the positives in everything. Also, she’s strengthening my cultural upbringing and values as a Tongan mother. I have to be the main core root to hold us all together and try to balance out life.”
To follow Jeannette Logan-Queensell’s journey, go here:
