“My daughter Kaitlyn’s (Kaiti) name means ‘pure’,” says Morag.
When Kaitlyn was about four months old, Morag and her husband Mike noticed that she was not reaching her milestones. She was unable to roll, seemed absent in terms of awareness of other people, was sensitive to light, noise, wind and struggled with feeding. They embarked on a series of genetic testing for her, a process that took nearly a year. The testing, as well as an MRI scan, confirmed that Kaitlyn has Congenital Muscular Dystrophy.
Morag decided to give up her career to look after Kaitlyn fulltime. Kaitlyn is nonverbal and cannot walk unsupported. She communicates through PODD (Pragmatic Organisation Dynamic Display) and uses a Rifton Activity Chair. The condition primarily affects her brain and eyes. She is only one of five in the world who have this particular strand.
“Kaiti is fully dependent on me,” says Morag. “She is with me when I vacuum, with me when I can do dinner prep, with me when I hang the washing and with me when I shower and go to the toilet.
I spend hours doing physio and working on communication (with her). Some days I may only get three hours sleep.”
Morag also works part time, at not-for-profit Women of Worth Ltd as the Lead Facilitator / Programme Developer http://wow.org.nz/ Their older child, Abi, is at school.
“Abi has seen and experienced things that as a mum, I would never have wished on her,” says Morag. For example, she’s witnessed Kaiti’s seizures, and at school, she has been teased about and blamed for her sister’s condition. Unfortunately for Abi too, their lives are filtered through rest time for Kaiti. But Morag says that she has also gained so much through having Kaiti as her sibling as well, such as more compassion and empathy, and the ability to see the good in others and help those who are less fortunate.
“Abi is a beautiful, caring, smart, compassionate, big hearted kid who has so much natural talent and sassiness that her future is filled with amazingness. She is a natural leader and a confident kid who knows who she is and what she wants,” says Morag.
The family have had discouraging experiences when it comes to navigating government support systems like NASC and WINZ.
“Why are we subjected to the third degree to get the assistance and support we need? Thinking outside the box, we don’t need help with Kaiti but I would welcome support with housework and other tasks. Not every person is alike of course, but this is one area that really needs reform and change.”
And there are the misconceptions she’s had to face from people of course.
“Not every person who uses a disability park is old! Having had three horrible experiences with this, it does shake your confidence about going out and being a part of the world we live in,” she says.
However, she tries to live each day to the fullest. “Of course I love my whānau, we’re always looking for the special moments that happen organically!”
She stays connected with the Muscular Dystrophy Association, Wellington Early Intervention Trust, Riding for the Disabled for support, and when she can, pursues her interests, whether it’s gardening, walking, spending time with friends or going for a walk on the beach.
“This road of being a whānau of a special needs child is tough, at times it is cruel and takes our breath away. It is the most rewarding yet unappreciated job. It is 24/7 and is constant and is done due to an unrelenting love for our pepe. My hope is that we as whānau would be recognised for the job we do and paid so we do not have to work part time so meet the essential needs of our family.
It is tough enough and without the moral and financial support of our tribe and me working part time and my husband working overtime, we would not survive.
To all those families who are in a similar position – kia kaha may you know you are loved, may you feel the joy and love that is found in caring for our loved one.”
“I have learnt so much.
I have learnt to trust my judgement do what is right for us as a whānau
I have learnt what it means to be prepared
I have learnt to celebrate and look for the joy in small things
I am learning to be kind to myself and allow myself kindness and love
I have learnt the importance of family and a village and ensuring that relationships as much as possible continue to develop
I have learnt that my best is good enough!”