It’s October 6, right before midnight and little Kyro our fourth baby (yes I know what you’re thinking, we are crazy) decides he’s ready to come out just shy of two weeks too early. At this point, I haven’t had a chance to finish handing over my work projects and neither has my wife. Life is already crazy with both of us in new careers and with 3 kids. I remember that night we were all hoping that this was a false positive so we could be better prepared but Kyro had other plans.

After just over 2 hours in the hospital and maybe 6 minutes of labour (no that’s not a typo) Kyro was born. Those were the quickest 6 minutes of my life, they went by so quickly. I was in shock. This was unusually quick but maybe it was normal considering this is our fourth child?

I was tired, for a lot of reason. It had been a tough year mentally for a lot of people including us, a new career for me and adjusting to all the life changes caused by the pandemic. Nothing you may have not experienced yourself, things like educating our kids from home to the lack of activities outside our home. Though this night I was mainly tired because it was late, way past my bedtime. I remember looking at Kyro thinking he looks a bit “different” compared to our other kids. He also acted different, he didn’t cry much if any at all. He was also very “relaxed” but I didn’t think too much about it. All I cared about was that he was healthy and so was my wife. Though the thought of him looking different, being smaller and less “energetic” stayed with me, in the back of my mind. As Krizia and I continued to be in awe of this sweet little boy and still in shock of how quick everything happened our excitement for meeting Kyro was starting to wind down when our midwife noticed a bump on his stomach. She said not to worry everything seemed perfectly normal, his heartbeat was great and he was breathing just fine. She called in another midwife to have a look at Kyro.

The second midwife came in, inspected Kyro carefully and asked if we got the nuchal fold screening test. I didn’t really realise what she was asking at the time but my wife said no we didn’t. The second midwife just like our first was lovely and congratulated us on Kyro’s birth. She said they’ll have a paediatrician visit us soon just to check on Kyro. A little while later the first paediatrician came in and at this point I must say there was a slight bit of panic settling in for me. What if there is something wrong with our baby I thought but I tried to stay positive. The first paediatrician also inspected Kyro and held Kyro flat on his forearm letting his limbs fall down, he did this a few times holding Kyro’s limbs up and letting them fall. Each time Kyro’s limbs just fell as if he wasn’t in control of them. I have to be honest I was starting to really panic. I don’t remember the paediatrician’s exact words from the whole conversation but I recall a few things that have really stayed with me. He made this statement “he is floppy” while holding Kyro on his forearm. He also said we would need to do genetic testing to be sure. To be sure of what I thought. Is my child dying? What’s wrong with him? This paediatrician was cold, almost mechanical, showed no human emotion and struggled to communicate with clarity. If you know anything about downs syndrome you may know where he was going with his hints though he never came out to say those words, down syndrome. Me on the other hand, sleep deprived at 2 am with alarms of panic going off in my head didn’t connect the dots. I was now immersed in my state of panic, I was really scared for Kyro.

Our experience didn’t get much better, we didn’t get much sleep that morning especially considering that we found out Kyro’s oxygen levels were inconsistent from his feet to his hands and we had to move him to the NICU. He was covered in multiple wires from monitors that were on his hands, feet and heart. We weren’t supposed to hold him unless he was feeding. The first 5 days of Kyro’s life we spent with him in the hospital were extremely stressful. My stress levels were through the roof, I found myself crying many time a day thinking of what may happen to Kyro. I know part of it was the lack of sleep but the other part was that I didn’t know much about what it meant to be born with downs syndrome which is what we were told by our second paediatrician was most likely the condition Kyro was born with. So I started to read and research this genetic abnormality. Of course, many of the stories are just so heartbreaking. From babies being born in an emergency c-section because their heart rate suddenly dropping to having to get heart surgery at birth. I mean I had no idea how my life was going to change and I didn’t know just how much I would love this little boy.

Let me fast forward out of the stress filled times of uncertainty to now. Kyro is just over 6 months old as I write this. He is pretty healthy and doing well considering his physical and biological challenges. Though as parents our days are mostly filled with joy and love with Kyro it’s been a very different experience for us. You may know that kids with down syndrome battle with hypertonia or low muscle tone. This meant that Kyro didn’t move very much for the first 3 months of his life. It’s hard to describe, if you’ve ever held a baby you know that they move around a bit and can hold their limbs pretty well and they start to reach for things, hold small light objects. Kyro’s physical development is delayed. For example, he has just learned to hold his head up and he’s getting pretty good at it, another delayed development in smiling. Most kids by now smile pretty frequently and show a variety of emotions on their face by moving their facial muscles. Things like this just meant that there was not a deep physical bond between the parent and the child at least in my opinion. Kyro didn’t smile or react facially to almost anything until he was about 3 months old. For us, this has meant that his milestones as a newborn are on a different timeline compared to other newborns and we celebrate them with much more excitement because we know how much harder it is for him to smile or to try and hold his head up. He is also surrounded by his older brothers and sister who love him and are truly obsessed with him. They don’t look at him any differently though we have explained Kyro’s health to our kids and they don’t even notice that he looks different to other kids. They love him unconditionally and smother Kyro with kisses and are constantly fighting over who gets to hold him first.

We are still early on our journey with little Kyro. He is making good progress but there are two health related issues that we need to keep an eye on. We also don’t know how or if his health situation will change as he grows older. Right now he has 3 different therapy sessions to keep him developing as best he can and keep an eye on any development delays he may experience. We are so blessed to have this little boy, it’s been so interesting and fun having a newborn again especially considering your confidence as a parent only grows as you get older especially considering Kyro is our fourth child. I love seeing our older kids interact with him, it’s such a sweet and innocent bond filled with so much love. Kyro is also such a great cuddler because of his low muscle tone, my wife and I just love holding him because we get so much love from him. He’ll just lay on your shoulder and hang out with you and gives you lots of love. Our hopes for Kyro is just health and happiness. There are many thoughts that go through our head like how much of a “normal life” will he able to have and who will take care of him after my wife and I are long gone. For now, we are taking it one day at a time and enjoying the love filled moments we have with him.

In February I decided to do a physical challenge to raise money and awareness for all children with disabilities. This was a huge challenge for me as I was struggling with my mental health but thinking of Kyro and focusing on hitting my activity milestones kept me going through the whole month. I pushed my body and my mind to their limits. It was all worth it, I raised just over $1600 dollars for charity and learned that when things get tough I can get tougher.

I hope reading this has added some value to your life. One last thing, I want to thank everyone who has reached out to offer advice and support. It’s so good to know there are amazing people out there going through their own life challenges yet still willing to come out to you and ask you if you’re okay. If you feel challenged in life just know you’re not alone and there are other people who can help you push through. Always remember that there is light at the end of the tunnel. Thank you.