“My husband, Tui, and I were just newly married. We had moved into a new house and were enjoying our bubble of newly married life. Fast forward a few months and I found myself taking a pregnancy test and seeing positive! We were happy! And nervous, as we still felt so young but very excited for this new chapter in our lives.
Everything was going fine, we were excited to have a scan and be able to see our baby! And that we did. It was amazing, the baby we were looking at looked perfect. As perfect as a 12-week scan could show of coarse. In my naive mind, I had no idea what they were actually looking for in the scan, I just thought, ‘Great! I can see my baby!’
But then a few days later I got a call from my midwife to come in. I didn’t think anything of it. I wasn’t told to bring Tui and so I didn’t. She sat me down and broke the news. ‘Your scan and blood tests have come back with a high chance of your child having Down syndrome.’ What?! Am I dreaming right now?! I didn’t even realize this was a possibility, I was young (22) and these sorts of issues had never even crossed my mind.
I went home and cried, I think I was just in shock from the news. Where did this even come from? That morning I was just happily pregnant, and now? Now my whole world had been tipped upside down. I told Tui when he got home and he, being his positive self, assured me our baby would be fine.
We then spent the next few weeks in a limbo of uncertainty. We chose to have an amino to tell us exactly what we were dealing with. I needed to know for myself. Abortion was never an option for us. We loved this child regardless, but we needed to know to prepare.
I remember during that time people telling me their stories of false test results. I remember people telling me this child would be perfect regardless, and then the next sentence would be them praying the results were wrong and our child would be born ‘normal.’ I know they meant well in their minds but in my mind, all they were saying was that having a child with Down syndrome was worth praying against. I felt like my child was not wanted as they would be ‘different.’
Tui and I were eating dinner one night and we got the call from the midwife. ‘I would like you and Tui to come into my office to see me.’
I told her, ‘No, I want to know now.’
‘Is your husband with you?’ I assured her he was and then she said, ‘The tests have shown your DAUGHTER does have Down syndrome.’
It felt like time just stopped. I had no idea what to think or how feel. I knew nothing of Down syndrome. I had never had contact with a person with Down syndrome so I had no idea how amazing they were. I felt like my freedom was over. I felt so incredibly upset. I now wish more then anything I could take those feelings away.
We went through our pregnancy with a whole lot of medical professionals telling me everything my child would not achieve, and me deciding to not believe a word of it. I had educated myself by now. I had read all the positives stories I could. I had spent hours on YouTube watching beautiful children with Down syndrome thriving. My child was loved, adored, and mine. But I was still scared. I was petrified.
Fast forward to the day of her birth. I had been in labor 20 hours and nothing was going anywhere. I was broken. Physically and mentally I was exhausted. I had a strong woman whisper in my ear as I was having an absolutely horrendous contraction. ‘This child was made for you. You are the only mother for her, and she is going to be your greatest pride.’ These words broke me. I was a scared young woman about to take on such a huge life change. And I didn’t know if I believed her, I couldn’t even get this child out, let alone all those other tremendous things.
Eventually after 10 long hours, my daughter was born. They placed her in my arms and every single fear I had for my life was gone. I looked at her and I knew she had Down syndrome. I could see it in her face. She was perfect. She was so incredibly perfect. I was never going to let her go. The strong woman was right. She WAS made for me, I WAS the only mother for her and already she was my greatest pride. I looked over at my husband I knew he felt the same. The look on his face said it all. This was our child and she was perfect.
Taya underwent open heart surgery to fix three holes and came out all healed up and perfect. We were given the all clear from the heart ward and we were starting to live our lives! We went on to have another beautiful daughter and life was great. And then one night my husband found a lump in his neck.
Skip forward a few months and a few tests and we found ourselves sitting in the specialist’s office across from a man who was telling us my husband had cancer. ‘You have cancer in your thyroid, we would like to operate as soon as possible.’ My whole world crashed again. I was numbed with fear of losing my husband. Although the surgeon assured us it was an ‘easy to fix’ cancer, I knew cancer could spread. I had seen it in my best friend and my father. They sadly lost their battle and I couldn’t lose my husband as well. I felt sick, so extremely sick. I couldn’t eat. I was throwing up. That’s when Tui suggested, ‘I think you should take a pregnancy test.’ ‘There is no way,’ I told him. But I took one anyway. And just moments later, found out amongst this horrific and highly stressful, emotional time, I would also be carrying a new child.
I was going to be a widow, with three children.
This is where my mind was.
Tui went under the knife and his thyroid along with some lymph nodes were removed. My beautiful child was then born, and almost right away after, Tui went through three rounds of radioactive iodine meaning he couldn’t be around me or the children for weeks at a time. But eventually he was told he was in a place where he just needed monitoring.
Once again we were ok, things could now go back to ‘normal.’ We could move on with life and try to achieve some dreams that had been on hold. Or so we thought.
My beautiful middle child was suffering from headaches. It was getting worse and worse and I was becoming extremely worried. I was told it was my anxiety. I was told she just suffered from migraines. I knew something was not right. But I felt like no one was listening. I started to think I was crazy and anxious and she was fine. But then one day I trusted my gut. I took her to the ER and wasn’t leaving without an MRI.
I remember sitting in the waiting room for the results and thinking, ‘I’m either going home to cook my family dinner and get on with our lives, or everything is going to change.’ I saw our doctor who had been treating us walk towards us with an older, more experienced looking man, and I knew it was going to be the latter. I just knew.
‘We have found a mass in your daughter’s brain.’ That was enough. My world crashed yet again. Why again?! How much more can one handle?
‘Tell me she will live, tell me she will be ok. Just tell me,’ I urged the doctors. But without a biopsy we all knew they couldn’t tell me anything. The next few months after that really are a blur. Our beautiful girl underwent two massive brain surgeries. We spent a lot of time living in the hospital and the staff started to become like family.
Right now we are home, our daughter is waiting to start a six week stretch of radiation that we pray will kill off the remaining tumor. She has a lot of hormone deficiency’s and will be on medication for the rest of her life. Once radiation is finished she will start tests for her growth as we are pretty sure that has stopped and therefore she will need daily growth injections. BUT she is alive, my husband is alive and my beautiful first born is alive.
I feel blessed each and every day to see them and hold them. I have my family and that is all that matters. I have learned and experienced as a family we can move mountains. As a family we are stronger. Now I love to educate on my Instagram and teach others who are on the same path that life can be beautiful. Having Down syndrome, having cancer and having tumors does not define you. Attitude is everything. Life is a choice. We choose to be happy.”
This story was submitted to Love What Matters by Tamarah Whittaker of New Zealand. You can follow their family’s journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here, and subscribe to our best stories in our free newsletter here.
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