The new normal with Bailey and the fun we have as a family is no different to other families
Our little Bailey came into the world on 7 February 2008 and our wonderful, eldest daughter Jade in 2004.
The numbers 4 & 8 have always been special numbers for Kim and me, so we knew we were blessed with this co-incidence.
Like Jadie, we had a rather uneventful pregnancy with Bailey, all tests were good, gynae visits came and went, both mom and dad were as happy as anything, and in or minds Bailey’s birth would be no different to Jadie’s.
Bailey was born by C-Section, much to our delight her APGAR test was normal.
But something was wrong.
When I held her in my arms for the first time, I said to Kim that her eyes look too small for her sockets.
We didn’t pay too much attention to this detail as we knew babies’ eyes usually have a mind of their own for a little while.
Life continued, with our beautiful little girl at home and settling back into normal life was both comforting and a challenge with a newborn.
Our concerns about Bailey started to materialize when she was just not hitting the milestones that we knew Jadie had managed.
Unbeknown to us, our journey with a special needs child had begun.
Kim and I were now in a world that was totally foreign and quite daunting to us.
Dr. Strachan our pediatrician, has been a guiding light throughout our journey, combined with a very inquisitive mom who needed to research everything, Kim took on this challenge with such gusto and determination, we were not only sitting in Neuro’s offices on a regular basis, but were now having genetic testing done to try see why our little girl was different.
After what felt like a lifetime, we had the results we had searched so hard for.
Bailey’s condition had a name…be it mostly numbers (15q Duplication - the short version, detailed Tetrasomic 15q11.2-15q13.2, Trisomic 15q13.2-15q13.3). But Kim and I finally knew what we were dealing with.
What had become apparent to us both, was the lack of information available to young parents of special needs kids, in not only diagnosing conditions but merely support. We were in the dark it felt like it for years.
We then found UNIQUE, a UK based organisation that network families around the world and provide support and research for Rare Chromosome Disorders. I remember receiving a document full of information, the most information that we had been exposed to.
We were hooked and realized that if we searched this hard, then surely other parents were doing the same. As a result of this we volunteered to be the local representatives for UNIQUE in South Africa. www.rarechromo.org
We already knew of couples, who sadly had split because of the pressures of their circumstances, and we knew this was not an option for us. Our children needed us more than ever and both Kim and I needed each other.
This had now led us to connecting many families to UNIQUE which we believe has been a shining light for many families.
Schools then became our next challenge for little Bailey Bug.
We realized quite quickly that not all schools were geared for our little girl and much deliberation, and a few tears resulted in us moving Bailey to schools that suited her at the ages she was at.
Now at 14, Bailey looks forward to getting up and going to school every day. Furthermore, made special when she can pour her on own milk into her morning tea, which through trial and error is almost mastered.
We learned from early on in Bailey’s life that if we were to treat her differently to other children, so would other adults and children treat her differently.
From the day she was born Bailey went with us and did everything we did, which included travelling, camping, hiking & numerous road trips.
And yes, we have endured those stares of strangers while my funny child decides to bark in restaurants or sit down next to a family and proceed to eat their child’s food as it arrived from the kitchen sooner than hers did, and their table was closer to the playground than ours. This wonderful family loved it and our wide eye desperation was met with their thumbs up that all was good.
Bailey, we know understands so much more than she could possibly ever express in words to us, but from her reactions to things we know all too well like the enjoyment of walking on the beach, swimming in the sea and my favourite, sitting around a bushveld trip fire at night.
Bailey gets the most wonderful love from all who we surround her with from cousins, aunts and uncles and her wonderful Grans, not to mention Jades school friends that to this day ask Jade to bring Bailey over when they get together.
Jade is her best supporter and ambassador, who tirelessly will entertain Bailey and spend weekends in the pool playing with her. Siblings are truly best friends.
Family and friends support, we now understand, is possibly the single most important thing for parents to have, that carries you through some pretty low moments at times.
The new normal with Bailey and the fun we have as a family is no different to other families we now realize, the only difference is we have a child that lives her life to the fullest, and we need to just make sure we can keep up with her and enjoy the important things in life.