While Kerry and I have never met in person, her love for the very gorgeous Sienna was obvious from the very first time I ‘met’ her in the online forums. We may all ‘choose’ our child with Down syndrome in some way, but Kerry and Sienna’s story of becoming a family is an extra special and unique one. Thank you, Kerry, for sharing your love story with us here today. ~ Annie x
My journey into being the mother of a child with Down syndrome started somewhat differently. Sienna was born to caring parents, but parents who were overwhelmed with the thought of raising a child with a disability. They wanted the best for her, and didn’t think they could offer it, so they put her into foster care so that they could maintain contact, and were part of the process that looked at where she would be finally placed.
I had never had children of my own but have been a teacher of children with moderate and severe intellectual disabilities for many years. When I found out about this gorgeous little girl, I started the process of becoming her forever mum.
I first met my baby girl when she was nine months old. She was an adorable, chubby baby with beautiful blue eyes and blonde hair. The people she had been placed with loved her dearly, but having a baby at this point in their life was not what they envisaged. I started to get to know Sienna and all that entailed. At this stage she was still being fed via a nasal tube and was not eating anything due to an oral aversion. Even with the tube permanently attached to her face, she was still beautiful! It didn’t take us long to fall in love with each other. Five days after her first birthday Sienna came home.
Having a baby, especially one that was tube fed, was certainly a new experience for me. When I first thought of taking on Sienna, I felt that my previous experience with children with disabilities would make it a little easier for me. Silly me!!! Having a child for six hours per day on five days a week for 41 weeks a year was easy. This was a new 24/7 job, and it was hard! But it was also oh so rewarding. As I stumbled along trying to quickly learn what was best for her, Sienna blossomed.
At 16 months Sienna and I drove to the Mater Hospital where she had a gastrostomy tube placed in her stomach to replace the horrid nasal tube. Although it was a fairly difficult few days for both of us, once we came home and Sienna got used to the tube in her tummy, she LOVED not having a tube attached to her face. What freedom!! And how people stared – not in a bad way, but because they could finally see this beautiful face in full. Our next step was to begin to wean her off the tube. Now that she no longer had something tickling the back of her throat she felt the joy of food. Sienna began to eat! To make her hungry, without compromising her development, it was decided by her paediatrician that we would only do night time feeds, slowly decreasing the amount as she ate more. This way she got hungry during the day, and her skills at eating increased dramatically. Six months later, she no longer needed night time formula feeds. However, it took another six months before she was independently drinking enough for the tube to be removed. We celebrated!
In May last year, Sienna and I went to New York with my family for my nephew’s wedding. Sienna had been asked to be a flower girl. Even though she couldn’t walk independently, she still walked down the aisle flanked by a groom and bridesmaid. She was the most beautiful flower girl ever, and there were a lot of oohs and aahs as she made her way down, with a huge smile on her face. To me, this showed the level of acceptance that Sienna has received by my immediate family. As far as they are concerned, she is my daughter and they treat her as such. This little girl has found a home, and family that love her so much. Not long after returning from New York Sienna started walking, and life got more interesting.
Sienna has now been with me for two and a half years. She has regular contact with her birth family, including her biological mum and dad, and their extended families. I think family is very important and so I try to facilitate contact as much as possible.
Even though I am not her birth mother, I am very much her mum. I can’t imagine loving a child more than I do Sienna. She has become my world – and I have become hers.
Kerry is a single mum to Sienna and they live in northern NSW. Kerry has degrees in Primary School Teaching and Special Education, and currently works part-time teaching a support class at a local public school while Sienna attends a family daycare. In their days off together, Kerry and Sienna enjoy going to Mainly Music, Kindergym and swimming lessons. Life is busy – but fun!