Who makes up your family?
We are the Roberts’. Jon the husband, a north coast local, entrepreneur and part time pilot. Myself Jess, Maritzburg born and schooled. I studied in the legal field, before working in retail for the past nine and a half years. I have recently resigned to allow for some flexi time and to concentrate on Luke and his cause. Luke our first born is two and a half, his interests include school, kicking the soccer ball and Macklemore, he also happens to be born with Down Syndrome. Holly our daughter is 9 months old. Her loves include her brother Luke, Derek the cat and mielies, in that order. We live in Salt Rock on the sunny North Coast where Luke attends a main stream school.
Tell me about your son / daughter?
Luke our son was Born with Down Syndrome. Him and his homies born with extra chromies have some similar features and traits but he is first and foremost his own little person. He has a very strong personality, a sense of humour like has Dad and a gentle side to him like his Mum. He adores music and most evenings will be found dancing to any song currently on the top 40, whilst we attempt to get some food into him.
Tell us about your diagnosis journey?
We found out that Luke would be born with Down Syndrome when I was 22 weeks pregnant. All non- invasive tests had come back normal, and as a relatively young, fit and healthy couple we were seen to be low risk. At our 20 week scan an effusion on our baby’s heart was picked up and as a result we were sent to a neo natal specialist. The specialist recommended an amino centisis as he wasn’t concerned about the effusion, but was concerned about an underdeveloped nasal bone. The amino results a week later confirmed that our little boy would be born with an extra chromosome. We were shattered. We did a lot of soul searching, a lot of researching and a whole heap of crying. There was never a question of whether we would keep our child or not, we just knew that he was ours and that he had chosen us for a very specific reason. From the moment he entered our lives we realized that that reason was to bring joy, love and awareness into the world.
Which moments do you find tough?
If I am completely honest with you there is not a lot that I find tough. When Jon and I found out that Luke would be born with Down Syndrome we took the conscious decision together that we would celebrate our son.
A very wise lady gave us an invaluable piece of advice in the early days which we still live by – “if you are ok, then everyone else is ok”
We are under no illusions that Luke is still little and as he gets older those tough moments may arise.
We are not embarrassed or ashamed of who our son is, we celebrate his individuality and we are thankful for his uniqueness.
Which moments do you find euphoric?
I find the simple day to day achievements euphoric. Seeing Luke grow, seeing his milestones being hit, and seeing his sheer determination is pure gold for us. The deep love that has blossomed between Luke and his little sister I count as one of our greatest achievements. I have no doubt that they will be each other’s greatest supporters.
The bond that Luke has with his grandparents, his aunts and uncles and our close friends is incredibly heart-warming for us.
What would you like to tell your pre mom of a child born with Down Syndrome self?
I would like to say “tell yourself to stop crying”, but that would be a lie. I honestly believe that it is through the crying, through the mourning of whatever it is that you felt that you had lost that the greatest sense of peace, joy and love can emerge.
I would tell myself that there is no need to be scared, but fear of the unknown is always scary.
I would try and describe exactly how much my heart was about to expand, that often that love would feel painful and be so all consuming that you would not even be able to breathe.
And I would tell myself to enjoy my afternoon sleeps, because being a mom revokes that privilege.
What would you like the world to know/understand about your child?
Luke was born with Down Syndrome. He is not Down Syndrome and Down Syndrome does not define him. He is Luke Michael Roberts first and foremost. He is an asset to this world and is as worthy as anyone else be here.
What advice would you give to a family who has just received a diagnosis?
The advice I would give is to grieve. Grieve, cry and get angry. And then get over it. I can guarantee you with all of my being that you are in for the most incredible ride, a ride which like all rides will bring you ups and downs. You have just hit the jackpot in a million more ways than you could imagine. Lean on others, learn from others, reach out and educate yourself. But most of all get excited.
If you could change one thing in the world to ensure an easier life for your child what would it be?
Acceptance. Our sole purpose in putting ourselves out there on social media is to create awareness, to show the world that everyone has a purpose and a right to be on this planet. It is only through the world becoming, aware and kind that this acceptance can take place.
Tell me about your blog Learning from Luke and how you have used this platform to create awareness?
Learning from Luke was born out of selfish need to deal with a myriad of different emotions after Luke was born. It has transformed into a platform for creating awareness, a podium for celebrating our son and a place of support for all parents. Creating an Instagram account was the next natural progression and @learningfromluke has gained momentum and as a result has over 6000 followers.
Tell me about this project that you have put together and how you met these families?
October is Down Syndrome Awareness month and I wanted to do something big. My dream was to gather local families with kids born with Down Syndrome for a photo shoot to celebrate their uniqueness and to showcase their beauty.
Derryn Schmidt was a no brainer when it came to finding the right person to be behind the lense, her brother in law David was born with Down Syndrome and has just launched his own confetti business ( visit @daveshop). Local clothing brands jumped on board with such enthusiasm to dress our kids and the lovely Lara Jean Bakes provided us with a cake for the shoot.
The pictures I believe speak for themselves. They are pure magic and depict so accurately their unique personalities and the pure joy that they bring to our lives.
What have you personally learnt from Luke?
I never stop learning from Luke.
When we received his diagnosis it was all about us. What can we do for Luke to make his life better, what can we do to ensure that he has everything that he needs in order to reach his full potential and so forth.
Never in our wildest dreams would we have believed that it was in fact the other way around. Luke has done more for us than any life coach could ever have.
He has taught us patience, he has taught us determination and he has taught us resilience. He is loyal to a fault and if you are in his circle you are there for good.
Most importantly Luke has taught us to love with our whole hearts and not just a little piece of it, he is the epitome of what love should be, pure, non judgmental and all encompassing.
Luke and Holly are dressed by Kapas Baby
All pics are by Derryn Schmidt