Tears flowing down my cheeks, not because of sadness but because of an overwhelming wave of emotions, happiness, thankfulness,relief and pride. You see Yesterday was the first soccer practice for Josslyn, something many parents go thru nothing to be so emotional about, except, 4 years ago we never thought this would be possible, at least not so soon.
Josslyn was born with Turner Syndrome or TS as we call it, she is a classic case which means she is missing 1 X chromosome. This is a disorder that happens randomly in the beginning of embryonic development, it happens in 1 of every 2,500 girls born worldwide and many go undiagnosed until their teen years unless they have heart problems or clear signs at birth or are lucky enough to have a Dr that knows enough and can spot it.
For more information about Turner Syndrome please look up: http://turnersyndrome.org/
For our Josslyn it would take almost 2yrs from her birth to get a diagnosis that would explain everything we had been going thru since before her birth. Josslyn had been behind on all her milestones and when I say behind I mean over a year behind. Her gross motor was affected by low muscle tone also common in TS, she kept failing hearing tests and having tubes put in to drain 3 times, her language was very behind to where she had just 4 words when she should have had at least 50 or more, this caused a lot of frustration for her and us as well so we embarked in sign language which helped. A team of Early intervention specialists would visit us weekly and we also did Occupational therapy and behavioral therapy to address the anxiety with change, her gross motor skills, her language skills.
The part that most got her frustrated was not being able to walk and not yet stand alone when she was already 18mo, until then she had done army crawls and rolling over because she could not get on her knees. Watching her brother who was 6yo at the time play Soccer and my husband, my older daughter and I practicing with him would get her so upset it would break my heart. I decided to use soccer as an incentive to move her legs. I would hold her dangling over the ball and swing her so she would kick it, oh she enjoyed that so much, however our backs did not. We did this everyday as much as we could because her want to play was bigger than her not being able to just yet. Soon after she started walking, was very wobbly and would fall a lot, but was happy to kick the ball. We practiced daily which helped her balance and coordination and she was pretty good and fast.
Even though she was finally walking by age 2 she still needed a lot of help, it wasn't until after 3 1/2yo that she could walk steady without falling so much, she continued therapy in which we practiced walking sideways and backwards, things that just come naturally to other children she needed to be taught. And even though by then we had addressed this obstacle we still had to face social anxiety, you see she also has a form of autism (PDD-NOS)and new things, change in things and being around a large group of people well it was just not possible for her.
Thankfully having her in special education at our school starting at age 3 and still doing behavioral therapy, speech therapy and Occupational/physical therapy helped her develop social skills needed to interact appropriately with others and being able to follow rules and instructions, being able to separate from us and go with her peers and teachers which brings us to Yesterday....an amazing day in which she had decided she was ready for Soccer and we decided to give it a try.
I am so thrilled she was excited to practice and be with her peers and did so well. It doesn't matter if they win games or not, to us she already won, she defeated the odds from the very beginning and will continue to do so because she is full of Determination.
To read more stories about TS and our families visit one of our friends and fellow TS Mom where she featured stories for TS Awareness Month and we had the pleasure to guest blog : Fat Little Legs
Thank you for reading our story and joining in our Turner Syndrome Awareness Campaign. We acknowledge TS Awareness month as February, but to us who love someone with TS, awareness happens every day.
I specially want to thank a GREAT group of Moms and Families that help with support and knowledge..if you are a parent of a girl with TS, please look for us here : TS Mommies n Parents
If you are in the medical community and wish to receive a FREE 1 Hour CME credit please visit: Turner Syndrome Society of US
Remember 1 in every 2,500 girls has TS, you may know one or come to love one and not even know it. Education,Awareness and Early Diagnosis is key to helping them achieve their goals.
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