Her Son Was Born With Down Syndrome. On A Difficult Day, She Did Something That Will Bring You To Tears.

Katrina's son Parker was born with Down syndrome — more specifically, Trisomy 21, the most common form of Down syndrome. This means he has three 21st chromosomes instead of two. Trisomy 21 a random, chance event that recurs across all demographics and in 1 in 660-1000 live births.

Parker is an amazing kid, and now Katrina dedicates her life to helping other new parents understand that she's not just okay, she is "exquisitely happy" — and, just like her, they will be soon too.

Katrina wrote the following letter on a particularly difficult day, and it's so amazing, honest and heartfelt that we wanted to share it with you:


"I am Parker.

And here I am, 20 minutes old. My mum doesn't know yet, but I have a surprise for her. I have Down syndrome."

I knew my son as 'Parker' since he was 18 weeks old in utero. Loved every kick I barely felt, when they tapered off in the last trimester. Every little movement was treasured as they were few and far between.

I had so many hopes and dreams for the son I wanted for so many years. To have him over with his teenage friends so I could cook up a storm for them, cuddles and love so different from a daughter. Taking out the trash without asking. Remembering my birthday. Cuddling me even when he was a grownup, because that's what a good son does.

When 'my son Parker' turned into 'my son Parker with Down syndrome' it was overwhelming. My mental fantasies of the perfect child changed to nightmares of a bedridden, ill child who had serious health issues and couldn't speak or interact with me. I knew no better at the time.

Reality set in, and my fears were broken down one by one with research and reconstructed with an accurate picture. Still a little overwhelming, parenthood always is. But doable. I could do this! I could be the special needs mum. All of the appointments, the advocating, therapy, hunting, researching, looking for more all the time, booking activities.

I was that mum, like all of us, trying to be perfect and do it all, and I looked at my son daily and loved him and waited for each new milestone, however tiny, with bated breath. Like any parent.

I looked at him and I would see his almond eyes needing a behavioural optometrist, and his lowset tiny perfect ears, and posture, and crawling gait, and my newly trained mind would assess the next therapy need and order of priority I could afford specialists in. Thyroid? What the hell is Reverse T3? Are the studies into human growth hormone relevant? Testosterone treatments? TML? Blood tests for leukemia? Orchidopexies. Adenoids. Obstructive apnea, central apnea, heart defects, laryngomalacia, tracheomalacia, Alzheimers, oxygen tanks, stickers for oxygen cannulas only sold in America. CPAP. Oh, this is the tiniest, tiniest sliver of a fraction of what exists in my google search history. I researched all of it. Some relevant, some not.

Then I slowly stopped looking at my son and seeing Parker with Down syndrome. I started seeing a little shining personality between those two perfect little ears. I saw him wiggle and dance and cry and tantrum and say 'mum', and 'no' to EVERYTHING, and laugh at his sister, and I realised that Parker is Parker. That is all. No matter what I research, he won't change. His needs are the same and I can take a day off and the world won't stop spinning and his medical team won't drop off the face of the planet.

It's one thing to always tell the world to treat your son like a person first.

It's another to take a deep, deep breath tonight, sit on the floor, and play. Just for the sake of it, and because that's what you do when you have a divine little 18 month old toddler who wants all of your attention, all of the time.

Not for gross motor, fine motor, vision therapy, integrating different sensory activities, but just hand him a toy and watch. Stroke his hair and read him a book and tell him he's doing great. Dance to his favourite song, and know he's loving it for the tunes and not for the vestibular stimulation.

Then I cuddled him tonight, and gave him a bedtime bottle, and put him in bed. Because we have surgery at the Mater tomorrow, and it's a big day."

Another post on her website struck me. Katrina writes," So, when a parent says to you, ‘this child is the best thing that ever happened to me’, don’t doubt them. Don’t try and break down reasons for it. Just know it is the truth, and even if they never verbalize their reasons to you, or themselves, it will remain a fact. This is living. Creating an opportunity to be a more empathetic, understanding and driven version of myself would not have been possible in this way without my son.

There is no ‘normal’ any more.
And there is no part of my life I was more grateful to give up."

Go to Parker's Place to learn and see more, and please SHARE this incredible story.

Published July 31, 2014

Barbara Diamond