“There is a high risk of Down syndrome in one or both of your babies.”

It was just over 4 years ago that we first heard these words said to us after about 4 weeks of uncertainty. It’s 4 weeks that we will never forget and a period of time I was thinking about today. So I thought I’d look back on that time and how far we have come. I’ve written about it before but it’s been a while.

It started with the usual nuchal translucency scan. Everything seemed ok during the scan. I recall watching numbers being entered into the machine and noticing what seemed to be more images being taken during the scan of one particular twin. I told myself it was simply because I was having twins. Of course, it’s going to take longer and they’re going to need extra images. However, it didn’t explain the difference in the numbers between Twin A (Alexander) and Twin B (Hope). It was after the scan was finished, when we were told they were going to look at everything and then they wanted to talk to us, that I realised something was not “normal” with the scan. They sent us to go for a walk down the street for 15 minutes and our minds started to race.

Ben and I walked down the road, our minds thinking about the scan and what was going on. We didn’t have to have a chat about anything after any of Lincoln’s scans. Why was this one different?

We went back into the ultrasound clinic and we were told there’s a medium chance one of our twins had Down Syndrome. The nuchal translucency measurement did not measure high enough to be considered high risk of Down Syndrome so I immediately started telling myself that there was nothing to worry about, and that the measurement was only slightly high. A medium chance was fine and there were no issues. It was Ben who said we should have the NIPT test so that we could be prepared either way.

The NIPT test was done within the next few days and then there was a two week wait before we would get the results. Two weeks of uncertainty. Two weeks of wondering. Two weeks of convincing myself that everything would be ok. Two weeks of doubting myself and arguing with myself about what to believe for. Two weeks that felt like forever. Then we received the call… “I’m sorry, I had really hoped this would come back differently. Your test shows that there is a high risk of Down syndrome in one or both of your babies.”

For a few days everything stopped while we processed the information and I think back now and wonder why I was so worried. I still remember the days where I just had to try to hold myself together to get through the day without letting my thoughts get the best of me. It was difficult for me to see myself where I am now. Back then, I pictured a child I couldn’t connect with because I’d always struggled around those with disabilities. I pictured a life of struggles because that’s often what people focus on and what you hear about. I pictured a child who was ignored by their mother because I didn’t believe in myself or what I was capable of.

I think back on those days now and a part of me laughs. Everything that I was picturing is far from what I am experiencing. Hope walks into our bedroom in the morning, sometimes much earlier than I would like, she comes over to my side of the bed and waits for me to pick her up so she can come in for a cuddle. She sees me and knows who I am. She sees me and knows she is safe. We have a special relationship that’s different from the relationship I have with the boys. She can’t communicate with her words just yet, but I know that she loves me with everything else that she does. If this isn’t connection, I don’t know what is. When it comes to struggles, the biggest struggle I have some days is deciding what Hope should wear. Sure we have extra work to do with her at times, we have exercises for physio, and things to work on for speech, but it’s not a struggle. It’s just part of what we do. It’s parenting and I can do that. And finally, thinking that I would ignore my own child, that just sounds kinda crazy now.

I often talk about how far Hope has come but I don’t stop to look at how far I’ve come. I was never a hugely confident person, afraid of life at times, but now I look at myself and see how strong I have become. I’ve seen myself grow more confident over the past few years and have realised just how much I am capable of. Having Hope has made me a better person for myself and for others. She’s given me something extra to fight for. She’s helped me find my voice.

When we first heard about Hope’s diagnosis, I was filled with fear. I was afraid of the future and what it would hold for me. Now, I’m excited for the future. I’m excited to continue to grow in myself, to see change, and to see where life takes me. I’m excited to see Hope grow, and discover just how much she is capable of and watch her do things that I never dreamed possible for her.