Parenting

This was undoubtedly the hardest time of my life.

This mum shares discovering her son had Down syndrome, and her campaign for an inclusive future for him.

My husband and I exchanged a look - we knew exactly what was about to happen.

My second son Jobe was born a little battered and bruised after a very fast delivery, but he was perfection.

My husband and I were instantly in love with our newest addition and planned on going home the very next morning.

But the next day a few things were not quite right with Jobe. His feet were incredibly blue, he was struggling to regulate his body temperature, and he had a weak pulse.

Our paediatrician informed us that Jobe would need to be flown to Adelaide for testing as they suspected something wrong with his heart. My mother’s intuition suspected something a little different and I started to panic. “I think he has Down syndrome,” I told my husband.

The health professionals showed us my test results for Down syndrome and reassured us that we were in the ‘not a risk’ category.

The midwives had checked over him at birth and found no physical markers of Down syndrome. Jobe looked exactly like our first born.

But despite their assurances I couldn’t shake the feeling that Jobe did in fact have Down syndrome. I couldn’t explain why.

When we arrived at the hospital in Adelaide we were told that Jobe had two small holes in his heart. This explained why his feet had not returned to their normal colour after his birth and also why he wasn’t able to maintain own his body temperature.

We were then told that due to this congenital heart defect that he would be tested for Down syndrome merely a precaution. It was expected that the test would come back negative.

Over the next few days Jobe slowly improved and was moved from intensive care to special care.

He had some issues with feeding but it was nothing that anyone was very concerned about. It was decided that he would just have a nasal gastric tube until he was strong enough to feed on his own.

On Jobe’s 6th day in Adelaide my husband and I casually strolled into the hospital to see our gorgeous boy. But when we arrived we were met by a team of doctors who called us into a private conference room.

My husband and I exchanged a look – we knew exactly what was about to happen.

“We are so very sorry Mr. and Mrs. Harrington, but the test results show that Jobe does in fact have Trisomy 21.”

My gut was right all along. He had Down syndrome.

I went blank. I couldn’t speak.

Tears streamed down into my lap while the doctors continued to talk to us.

My husband – my rock – sat and asked all the appropriate, pro-active questions.

“Where do we go from here?”

“What does this mean for Jobe’s future?”

We were truly terrified with the news we heard.

We were only 24 and 26-years-old ourselves. A diagnosis like this was never something we thought could happen to us. We thought it only happened for older parents.

After listening to the doctors we burst out of that hospital as fast as were could, crying through the hallways knowing we had the excruciatingly hard task of informing all of our family and close friends of this news.

What would we say? What would they say?

We didn’t how we were going to cope. We didn’t even really know what Down syndrome was at that time. All we could think about was the worst case scenario.

This was undoubtedly the hardest time of my life.

We ached to bring our baby home and start his life properly. We wanted to celebrate the beautiful little man we had brought into the world.

One of the things that hurt us the most was that people stoped congratulating us on Jobe’s birth once they found out that things hadn’t gone to plan. This was hard. Our baby was still born! He was happy, beautiful and the absolute love of our lives.

I wish when we first found out that Jobe had Down syndrome that we were weren’t given such a negative prognosis for his future. The doctors painted a pretty poor picture of what his life would be like, which was devastating.

But Down syndrome doesn’t have to be a devastating diagnosis. It’s not a disease – it is simply an extra copy of his 21st chromosome.

Once the news settled-in I started joining Facebook groups for families with children who have Down syndrome. Hearing their stories made the outlook for Jobe seem so much brighter than I was originally told.

Babies with Down syndrome may develop at a slower rate but they all get there in the end, it just takes a little time and patience – but to me that’s what parenting is all about.

In my attempts to find enlightening stories about children with Down syndrome I found the 2015 changing the face of beauty campaign. It’s a campaign aimed at getting children with disabilities included in mainstream advertising.

All children are beautiful so why exclude some of the most gorgeous children around?

Both of my sons are beautiful so it hardly seems fair that one is more likely to be included into advertisements than the other.

All I dream of is a fair playing field for all children. I hope that as we progress into the future we can learn to look past children’s diagnoses and see into their hearts instead.

A diagnosis does not define a child and not one single child on this earth is the same.

Jobe is now 13-weeks-old at and is surprising us every single day.

He is rolling, smiling, lifting up his head and just like any other baby. In fact he is advancing more than his older brother was at his age.

I have since started a page for Jobe on Facebook called Jobe’s Journey in a hope to connect with other families and give hope to those just finding out their babies have Down syndrome.

Our journey with Jobe may not always be smooth sailing but our life with Jobe is incredibly fulfilling.

We plan to provide Jobe with the same opportunities as his older brother because life doesn’t stop with Down syndrome. Jobe’s life is just beginning.

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