September 6th is Sotos Syndrome Awareness day, so for this I thought I would share what it is to have a child with Sotos Syndrome. What it means for us and other parents with Sotos children. This is our experience and experiences vary with this condition. There is a range of outcomes, but I thought I would share our story so far on this day.
Having a child with Sotos Syndrome to us means always being taller than other children her age and often being mistaken for being a lot older
Means having the appetite of an older child, but not gaining weight just height!
Means walking came later than usual but did eventually come and was celebrated and never taken for granted
Means expressive language is very delayed but receptive language is a lot better
Means every word spoken is celebrated – hearing mummy for the first time was amazing
Means behaviours are ok now… but we know they will likely become much, much worse as she grows with the range of outcomes here leaving us very anxious for the future
Means my child may catch up, but with such a range of outcomes the future is still very unknown
Means my child is often under-estimated by Drs, therapists and even us!
Has meant a G-Tube, Sleep Apnea and a range of health conditions which she has overcome along the way with more to come no doubt
Means beautiful soft skin and a child who always wants to be cuddled
Means infantile scoliosis and needing to wear a brace for her whole childhood to hopefully avoid many surgeries
Means so many tests before 3 years old including MRIs, multiple X-rays, Swallow tests, hearing tests, eye tests, sleeping studies, blood tests, screens, heart exams, bone age tests… too many to list.
Meant a delayed diagnosis as pin-pointing a rare disease can take time
Means a community of mums who are better experts on your child’s condition than any of your Drs or therapists
Means a family of friends all over the world, all helping you with each challenge that comes with your child’s condition
Means reading posts from families with children older than yours, often in fear of what is to come but knowing you will be supported and never alone on the way
Means being grateful that your child’s condition is not worse than many you learn about along the way
Means knowing your child will progress at their own speed but will need a lot of help and therapy to get there
Means carrying a toddler who is nearly 20kg with a brace on and looking at specialised strollers to help them with fatigue
Means a child who loves reading and music and sings more than she communicates!
Means your child has features like children all over the world, but still looks like her sister and parents
Means fears for the future but also a lot of hope, depending on the day
Means a beautiful smile, a caring lovable child who teaches you what it truly means to live a good life and makes your heart grow a little bigger.
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