“When my daughter dies I will wash her and dress her. I will put flowers in her hair..”
Peta Murchison speaking to a packed and teary Opera House at TEDx last year about the day her little girl will die. There was a time when she thought Mia would live forever, or at least way beyond her. There was also a time when she wouldn’t have imagined she’d have the courage, or the cause, to divulge her most intimate fears and realisations to some 40,000 people. But that was before everything changed, before her reality slid into unreality, when her seemingly normal family of four was dealt a random genetic swipe with the diagnosis of her now seven year old daughter, Mia, with Batten Disease, a rare genetic neurodegenerative condition which is incurable and ultimately fatal. Save a miracle, Mia will not live to be a teenager.
Until the age of three, there was no way of knowing anything was amiss. Mia was talking and, her mum says, her comprehension was “beautiful”. She loved riding her bike and playing with her younger brother, Toby. “ She was hilarious”, says Peta. “She just made us laugh and she was very independent and just knew what she wanted. She wasn’t a people pleaser at all. She would boss us all around. She was a bundle of energy and very active and affectionate”.
Mia had her first seizure at three and began “regressing” which eventually lead to the diagnosis of late infantile Batten disease or Neuronal Ceroid Lipofuscinoses (LINCL) which affects one in 100,000 children, of which both Peta and her husband, Hamish, were unwitting carriers.
“When I found out, I just hugged Mia and cried and was kind of numb and it felt like it was a dream”, Peta recalls. “But there was also part of me that felt that the puzzle had fit together, at least we knew what we were dealing with. As heartbreaking as it was, we had some answers”.
As Mia began “deteriorating rapidly” – losing her ability to walk, eat and see – her mother began her own transformation.
With mortality staring her in the face, Peta has resisted the option (tempting as it is) to give into grief and is, instead, pushing on through “every parent’s worst fear” of losing a child. She admits she’s not the woman she once was who wanted everything to be “perfect”, striving to keep up. “It’s very easy to get on the treadmill of having to get dinner and finish everything. I think I would have been focused on the more trivial, mundane things of holidays and renovations and making sure the children are doing everything they’re supposed to do”.
Knowing she’s on borrowed time with her “beautiful daughter” has snapped her into a state of enforced presence, embracing mindfulness and gratitude, unable to overlook (as most of us tend to do), that we’re on borrowed time. Peta is determined to make the most of every moment with the brutal and irreversible knowledge that they simply won’t last.
“I definitely have my meltdowns and my really tough days where I would love to hide under the doona and just lie there with Mia”, Peta admits. “But the reality is it’s not all doom and gloom. I also have this beautiful, beautiful girl that I want to cherish and make the most of the days that we have together. I feel really lucky that we have this precious little family and Mia is still with us and she brings in this love which we feel really blessed to be able to share. I’m very privileged to be her mother”.
Peta and her husband made a pact that they would give Mia the best life possible, “giving up the fight for her life for giving her the best life”. Even though that doesn’t look like what they once thought it would. “We want to have those family moments together and they don’t have to be the big holidays but they can just be in the lounge room laughing at Toby dancing and holding Mia in our arms and the expectation of how it was meant to be is very different because life never turns out exactly how you want it to but it’s more meaningful and it’s deeper because it’s our beautiful sad, sad life and we still feel very fortunate”.
Peta’s approach is a stunning awakening for so many of us who act like we have all the time in the world with our children, when none of us do. To watch her and Mia together, their obvious deep connection, sends me running to hold my own sons a little longer. Peta is conscious of the “opportunity” to evolve from her experience and, in turn, inspire others, to make something of her suffering, to find hope in the hopelessness.
“Without Mia being able to verbally communicate with us, there’s a deeper connection”, she says. “We’re more tuned into her needs on an intuitive level which mothers use with newborns but tend to do away with when they can talk. We’re a much more connected family than we would have been”.
They’ve adapted in other ways too. There’s no TV in the Murchison household because it robs them of time together, and Peta sleeps in Mia’s bed to monitor her regular predawn seizures.
Mia’s illness has upended their world but, Peta says, it has also been her greatest teacher.
“Our seven year old has taught me more than anyone in my life. How to be more patient, to not worry about the chaos and having everything perfect before you leap in and do things, and she’s taught me that it’s OK to be broken sometimes. My expectations have been so blown out of the water by what’s happened that I roll with it a little bit more and I enjoy the time because I see it as precious. It’s the most horrendous lesson to learn that life is short but I feel lucky to have this perspective where I will let a lot of things go and just be with my children”.
Meditation also gets her by, washing away the inevitable anxiety that comes with knowing she only has the now.
“I don’t know how I will respond when Mia does die”, she says. “There’ll be a lot of grief, but the hope I have is that having had Mia in our life, the joy and the heartache and the love that we have is so much deeper that it will carry us on forever”.
Peta Murchison has established the #Bounce4Batten initiative to raise awareness and funds for Batten Disease aiming to break the world record with images of people bouncing. Find out more at www.bounce4batten.com.au
(NB All donations through www.bounce4batten.com.au are directed to the national registered charity Batten Disease Support and Research Association (BDSRA) with the intent to help find a cure through supporting research).
This story was first published on Daily Life on 31st March 2017