2020 has been a unique year for everyone. For us it brought happiness we never knew and a familiar sadness. It was a year where our family underwent massive changes from welcoming new life to saying good bye to an amazing father and grandfather. It was an year in which appreciation for the mundane aspects of life came into view. Priorities and relationships were tested and realigned. Understanding, acceptance and forgiveness became a theme. It was also a year in which finding time to blog, read or sleep was impossible.
The birth of Gabriella was the best start to the new year. She changed our whole outlook on life and brought positive energy not just to me, Dinesh and Diyanna but also to our close family and friends. Gabby brought music and laughter into our home and for the first time in a long-time, unlimited joy. Her arrival also pushed us to make important changes to our future. Changes that were needed in order to bring some sort of normalcy and stability to our family unit. After all these years we were able to make a clean break and move forward accepting the past but having more hope for our future especially for Diyanna.
Over the year Gabby has turned out to be a law unto herself. She loves her older sister but at the same time hates to share hugs with her. She sings, screams, dances, climbs and gives looks that scares her father. At the same time, she knows when her sister is not well. She will quietly sit and watch as Diyanna has an episode. Gabby makes no sound or movement, its as if she knows that her sister is in trouble and that she needs our attention at that moment more than her. When the pain is too much to bear only then would Diyanna cry and Gabby who is patiently waiting and watching would follow suit.
This year has been big for Diyanna. It has been the first year that she has not been rushed to the ED or had the need to be admitted to hospital since her birth. It has also been the first year without a viral infection, and the first year she has not been the centre of attention.
Its hard to know how Diyanna truly feels about the arrival of Gabby and the disruption it has caused her life. Being a nonverbal child with minimal facial expression makes it hard to understand and know how she feels. Leading up to Gabby’s birth Diyanna had an increase in seizure activity. Weather it was because she knew there was a change coming or if it was because of the summer heat or because she was growing up, we will never know.
I felt that she knew Gabby was on her way. She could feel Gabby kicking. She could feel my tummy growing. She also must have noticed that I wasn’t able to be with her all the time as before and that daddy was taking on more and more of her care. As much as I would have like to have Diyanna come to the hospital to see Gabby for the first time, we decided against it partly because of recent her instability with seizures and the lack of equipment to take her in the car. After 3 days I was able to come back home and all Diyanna could have of me was a cuddle and my voice. I can’t imagine what it must have been like for her, to have me at every moment to not having me even though I was in the room.
Diyanna frowned first time she touched and heard Gabby cry. I don’t think she was impressed with the newest addition. But as the days went by, she looked peaceful whenever Gabby was placed next to her. The peaceful look would quickly turn to irritation when Gabby started to cry or scream. The transition from a quite home to a very noisy one was not an easy one for Diyanna or for Dinesh but one which both have got used too.
The pregnancy brought forward problems in caring for Diyanna. We had always known a lift was needed for our home the cost of which came to 130k. But in addition to that we would also need a full remodel of the bathroom, widening of door ways and passageways, installation of more ramps, making the garage wheel chair accessible. All highlighted as important by two OTs for Diyanna’s care into the future. While such changes were done, we would also need to find rental accommodation for at least 6 months. Financing such modifications was not something we were able to do and we hoped to get support from the NDIS. In addition to this we were also told that Diyanna has to be in school by 2021. To us sending Diyanna would be setting her up for failure. Home schooling had been an option but given Diyanna’s condition it is not something that can be done by single person. It was also impossible to get content that works for Diyanna but also ticks the boxes of for the Department of Education. The only option left was for us to look into special schools.
Although there are a number of special schools in Brisbane majority of them did not have a good reputation and were not student focused. For us Diyanna’s health, safety and wellbeing was priority. We needed the school to adapt to Diyanna not vice versa. After much research we settled in selecting Darling Point Special School as the one for Diyanna. The catch was that it was a 30-40 min drive during school time. Given Diyanna’s increase in seizure activity and the complexity and cost of modifying our home (we had already done modifications to it) we decided to sell and move closer to the school.
At the same time, we were making these decisions covid 19 was starting to spread in Australia. Diyanna who for the past few years had multiple hospital admissions due to viral pneumonia was at high risk. Protecting her was and is important. Although we never take Diyanna out, we could bring the virus home. Dinesh got permission to work from home in early March.
The uncertainty that covid brought meant that we needed to sell our house without losing market value. Whilst having a child with special needs, a new born, me recovering from surgery, a covid 19 surge and not having family due to restrictions and flight cancelations Dinesh and I had to get our home ready for viewing and packing. Thankfully we had Vindiya who was part of Diyanna’s care team and her wonderful family helping us.
Selling our home turned out to be the easy part. Finding a home that ticked all the boxes and close to the school in our price range was next to impossible. After searching for almost 6 months we settled for a house that still needed to be renovated but in comparison the modifications for Diyanna was not as costly as our old home.
During this time Diyanna’s seizure activity went up again. The stress of moving is hard for any child. For Diyanna I believe it was much greater. In the interim we stayed with Dinesh’s moms which for us a blessing as finding a home to rent for such a short period was difficult. We moved to Manly in September and started the renovations towards the end of October.
Getting Diyanna’s voice heard and her needs met was and is a war. The longest and the most frustrating is the ongoing battle with the NDIS. For my first appointment with the principal I felt the need to prepare to go into battle as I always had to do. Darling Point Special School was very different. I found a school and principal that understood the reservations and fears I had of sending Diyanna, her fragility and complexity and the complex support structure she needs. The school was ready to fit in to Diyanna. I was happy, I knew then and there that the choice we made to send Diyanna to this school and to move closer to the school was the right one.
Even though we were settling in to our new home Diyanna was still periodically having increased seizure activity. I was still not able to give her the time as I did before and to be honest, I was slow to react and change Diyanna’s diet and timings. Revaluating her diet, we I decided to give the FODMAP a try. Its been only a few weeks but so far it seems to have had a positive effect.
Looking back on this past year I am glad that we not only survived but we also thrived in our own way. I am grateful that Dinesh got to spend almost a whole year working from home watching his princesses grow. Grateful that Diyanna had a full year out of hospital and is growing up to be a beautiful little girl. Grateful that Gabriella brought us the joys of having a normal child. Blessed to have a roof over our head and food to eat. Bless to have family and friends who continue to support our complicated and challenging journey. Thankful to have had an amazing man as my father whose memory, words and actions I will remember and pass on to my girls.
Thank you 2020 for the lessons taught and here’s hoping that 2021 will be less complicated for everyone.
Thanks so much for sharing Cindy! Hopefully it was therapeutic for you. It has been a harrowing year for so many of us, especially in the special needs world. Thank God (for real) Diyanna has such a devoted family as you to ensure she is loved and cared for.
– Chris (CACNA1E Dad)
What a year for you!…..again, I have huge admiration for you & Dinesh 😌
I hope 2021 is a happy year for you all, albeit with the extra challenges of Diyanna’s schooling – wow!
Best of wishes to you all