We went from typical to not so typical in a matter of a few hours – our lives were completely changed.
I was a small business owner, my husband, Mart was a physician and we had one child, Franco. It took us over two years to get pregnant the second time – we yearned to expand our family. We were so excited when we fell pregnant with Sabina that we started telling people about her when I was only 18 weeks, around Christmas time. My younger sister was also pregnant and Franco was about to begin his first year at a new school – it was such a happy time.
One night in late January, that elation quickly turned to fear. I started experiencing contractions and at this stage, I was only 23 weeks along. The contractions got really intense, fast and I knew something was wrong. Mart was working at the time, so I waited for him to finish because I didn’t know what would I do with my son. He was only four at the time. When Mart came home, he said, “We need to go to the hospital!” I was rushed to the Women’s and Children’s Hospital at North Adelaide for an emergency delivery – it was too soon, I thought my baby was going to die. Whilst I was delivering her I remember saying,
“just save her!”
The reality was that if she were any younger, they wouldn’t have been able to save her. Her heartbeat was being tracked and my husband remembers that it stopped. It was an intense situation, every moment leading up to and during her birth. As soon as she was delivered, the medical team took her for resuscitation. I didn’t even get a chance to see her, I didn’t know if she was alive. After a few hours, they came back and said, “She’s in the Neonatal Intensive Care Unit. She’s on a ventilator. When you’re ready, you can come see her”. From that moment our new life started.
Sabina had haemorrhaging in her brain and it went from the smallest grade to the worst in just a few days. The trauma of her birth affected her brain development, and we knew early on she would have some challenges, but it’s all unknown. It was such a confusing time; it was a world that we never knew about. I never knew that a preterm baby at 23 weeks could survive – it was beyond my comprehension. However, it made me grateful, but also extremely scared for what was to come.
We had lots of milestones occur in the NICU that were different from how it was with our first. Many were unique; from reaching her first kilo to surviving her first 100 days; but then some milestones were the same as most babies, such as rolling over and learning to crawl. When she turned one, she had a routine eye checkup and that was when we were told that she had Cortical Vision Impairment (CVI). We were so focused on other things like crawling and walking that we never thought vision would be an issue.
What does this mean for my child? Is she blind? Where do we even begin? I had no idea what the next steps would be.
We were completely lost and really needed guidance. It’s daunting, there’s so much information. That’s when we were introduced to Can:Do 4Kids. I was so grateful when they came into our home. They clearly explained to us what CVI was and what CVI looked like for different kids, and that she may not be typical of what books say. Our miracle baby, Sabina had already defied the textbooks and her next challenge wasn’t going to be any different. What mattered was moving forward with her goals and supporting her in spite of those vision challenges.
We began Sabina’s therapies at Can:Do 4Kids with a speech pathologist to help with feeding and then language development later on. We eventually included occupational therapy in those services, too. The special thing about the therapists was their understanding of visual impairment. They see other children that have similar challenges and understand what certain behaviours would be because of how she interprets what she sees. That understanding gave me peace.Perhaps more importantly, was the emotional support that they provided. And they didn’t just support my child, they supported our whole family. They educated me, then I educated the rest of my family. They gave us support if hospital visits would get difficult and too stressful. They would offer to come along with us and that care was invaluable. Because they really knew my child, they were able to relate what the doctors were saying to Sabina’s current situation in an easier-to-understand language. Having that support for the family just makes everyday life so much better.
Access to the therapies at home also lead to a huge improvement. Sabina previously had group therapy sessions in the hospital, but she was often overwhelmed, tense and wasn’t responding to the therapy. Being at home put her at ease because she felt safe and secure and so she began interacting with the therapists more actively; that’s when I could tell that it was working. Every time we reached a goal or milestone it reaffirmed that the path we were taking with Can:Do 4Kids was the right one. She’s learning, she’s meeting her goals! Even during the pandemic last year, when we had to switch to online sessions, Can:Do 4Kids made it work.
Now, four years down the road, we’re not sure what challenges Sabina will face long term. We take things one day at a time, one goal at a time. As parents, we want our children to thrive as adults without us being there. It’s the same for Sabina but we just have to navigate a different pathway and make sure that she has access to everything she needs to get there. She motivates us to keep going and to be better parents, be better adults, be better human beings. It’s okay to be different and to grow up differently and learn differently. I think that’s what her situation and working with therapists has shown us; there are many paths to get to the same destination and we don’t always have to go the same way. It’s changed my family’s view of how we see others, how we expect people to be. And she is thriving! She loves climbing, music, singing, movies, reading, art and craft, and she’s got a great sense of humour; she’s really funny!
Moving forward, the next milestone will be navigating through primary school. We just hope for her to continue to succeed and to find the right school for her, and have Can:Do 4Kids supporting her through those times. I know there will be more challenges ahead, new goals to achieve, and we just hope that we have continued access to this wonderful group of people that will help our family along. Because if we didn’t have them, it would be a lot harder for us.
Thank you for reading,
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