Jaynie Johnson for Blacklist

River Bennett (Photographer River Bennett)

I had known of Jaynie Johnson for years. I had seen her (and her creative husband Nathan's) work, Blacklist,  adorning Interior editorials, and also observed their customised logos and images attached to various businesses in my local area. (Not to mention the cushions making my couch look like royalty.) 

Golden fonts and palm trees, simple textures and forms. There is a graceful peace that you feel when you glance over their work. A sense of relaxation, a yearning for holidays. 

I had crossed paths with Jaynie in the past but it wasn't until years later that I found myself sitting beside her at a birthday dinner, sipping red wine and eating cauliflower salad.

It was then that I discovered the kind of woman she is. A gentle, eclectic, humble, ridiculously stylish, strong capable mother and creative genius. 

It was 4 mths prior to this meeting that she had given birth to her son Dare. 

Her eyes lit up when she talked about him.

"He's the best. He is a total dreamboat. He's revealed things about myself and life that until now were a mystery. He is indeed a mystery."

Dare was born with Down Syndrome. 

"It was a normal pregnancy. I love being pregnant, and I'm not a real worrier, so it didn't even cross my (or Nathan's) mind that our baby & its birth would be that much different to Willow's, our 4 year old daughter. The pregnancy was so normal, way easier than Willow as I had placenta praevia with her. We were more excited to discover the gender as we didn't find out beforehand.

"His early days were heartbreaking, sad, scary, overwhelming - the antithesis of the usual joy-filled time a baby's birth brings. Dare was born not breathing, as he was born without nasal passageways, so we were separated at birth. He was born via C-section, resuscitated and intubated. We saw him a few hours after his delivery for a moment and then he was rushed to the Sydney Children's Hospital (don't even get me started on the wonderful staff there!). It was a few days before we could hold him and before Willow could meet him. It was not quite how we imagined.

"It was the day after his birth that we discovered he was extra special, as he has Trisomy 21, commonly known as 'Down Syndrome' (due to the name of Dr John Down who first characterised the genetic condition).  Dare remained in ICU for a week and on Christmas Eve was moved to a ward where he stayed for a fortnight. He underwent his first surgery at day 1 of age which was successful in creating nasal passageways with the insertion of stents. Hospital, and surgeries have been a somewhat constant in these early months of his life, having just chalked up his 5th surgery (he's just 4 months old) but we are so grateful for a health system, and hospital staff that values the lives of individuals and families. We were housebound for the first months as he required constant suctioning so his stents did not block, but we are real homebodies, so that wasn't a real drama.

"People often comment with their concerns about Down Syndrome and ask me, 'Will he be able to walk/work/get married/drive a car ….?' I respond with 'I'm not sure either of my children will do those things.'  For us it's important for people to understand that we have the same expections for both of our children, and  for any more children we may be blessed with in the future. We want them to be the best versions of themselves.

"We find it's either lots of questions, or none at all. I think it's one of those things that not many people know too much accurate information about, I know we didn't know a thing before we had Dare. We thought we would have to stop working to be his full-time carers, and that couldn't be further from the truth. I went back to work the day he got home from hospital (for better or worse, haha). I don't mind the questions, it's not uncomfortable for us, it's our life. 

"When I think about Dare I have no words. My heart is full to overflowing when I think of the words that describe his ever-emerging self, and the gift that he is to our family, and words fail me.

"The thought of him makes me well up as I have no words for the feelings I feel for him. The journey with Dare at the beginning was so hard, and so (honestly) devastating that I never imagined that I could feel the way that I do about him now. That is the thing with Downs Syndrome - at first it's like a bomb has gone off, and then the worst of it is over. He is so happy, peaceful, strong, happy, easy, talkative, active, alert, happy … (you get the picture)

"Willow (his 4yr old sister) adores him. She is a 20 yr. old in a 4 yr. old’s body. The best story to summate Willow is the retelling of their first meeting. We had talked so much with her before Dare's birth about how exciting it will be to bring the new baby home for Christmas and how fun it would be, how she would be the very first person other than us to hold him/her and then he was delivered and it all went very pear-shaped. It ended up taking us three days before we introduced them as we just didn't know what to do as we didn't want her first memory of her brother to be scarred by the copious amounts of tubes and the overwhelming sight of her unwell baby brother. We really couldn't put it off any longer as she was desperate to see him. We explained that he wasn't well, but decided to not go into too much detail. The moment she laid eyes on him she said, "He so cute and lovely", she saw beyond the tubes and machines and saw him for him. It taught us the most invaluable lesson and it was the purest balm for our heavy hearts. 

"At the moment our day-to-day consists of lots of different things (like all of us), Craft/Breakfast/Exercises for Dare/ School drop offs/Naps/ Work/ Feed/ Exercises for Dare/ Sleep/ try and tidy/ Work/ School Pick Up/ Feed/ Craft/ Appointment for Dare/ Trampoline/ Swim/ Baths/ Dinner/ The Voice/ Bed time/ a million and one lullabies/ dinner for us/ work/ Seinfeld/ feed/sleeeeeeeeep.

"I tend to work best at night, so on Mondays and Tuesdays I don't do any work during the daytimes and just do it at night.

"My focus is on the family, so when I am with the children I try my absolute hardest to not do ANY work. No emails, calls, nothing.... sometimes though they will have to come into the studio, so they do. And they love it. We try to include them in as much of our work as we think is healthy. Willow is a tough critic, brutally honest, but I think she has a great eye. We always want our kids to know that we love what we do for a job.

"Our biggest struggle has been not looking too far ahead, which is difficult when you are dreamers, but we take each day as it comes and celebrate the small things. "

Looking and moving forward is a common theme when you are part of The Wolfpack Mrs. community. How do you do this?

I do it by staying positive and knowing that at the heart of the matter, all is well. 

Favourite vacation destination?

We love Thailand, anywhere with good cheap food where you can swim/surf/lay in the sun and hire a nanny. Willow loves Bali most though, she adores the people and the pools.

A night in or night out?

I love both, it's an equal tie. 

Classic or pop culture?

Anything from anytime that I like, I like. 

Sea or city? 

Sea. Always the sea. Our blood is blue afterall. 

Colour palette?

 Blues and monochromatic. 

Favourite Home time scent? 

For home it's Mad Et Len Candles, the absolute best. For me it's Blood Concepts in O in particular.

 Interior designs inspired by?

Surf Shacks, and Heidi Middleton .... everything she does is magic. 

Any more babies?

Hopefully.

Any thoughts you could give to other Wolfpack Mrs. mamas who may have children with special needs? 

I think our kids are happy when we are happy, so if creating makes you happy, create. If resting makes you happy, rest. As with all our kids, they are all unique individuals and our real role as parents is to teach them how to be themselves.

 

To check out more of Nathan and Jaynie Johnson's work head to:

 http://www.blackliststudio.com

 Insta @blackliststore @blackliststudio

To check out more infomation in Downsyndrome head to:

http://downsyndrome.org.au

http://dsresearch.stanford.edu