Each year I actually struggle to put into words just how incredible the Turner Syndrome conference is. And here I am again for the 3rd year running, feeling emotional, humbled, exhausted, insightful, loved, understood, confused, astounded and so so darn lucky.
For me this year, the speech language and communication session really stood out. The discussion of sensory processing disorders and difficulties in communication (not verbal as such-you all know how amazing Grace's vocabulary and actual speech is) really hit home for me. Parts of the puzzle clicked into place. Little things like how much G says her hair and head hurts when I brush it. How it can lead to major meltdowns. There is a reason for it, an actual real life reason! Also how she is so adult like in her speech, yet can take things so literally or miss understanding what we may see as simple. Or the repetitive nature of her questions. The grit and intensity with which she asks and asks and asks again.
The timing of this session could not have been better as I was already beginning to compile a list to take to the community paediatric appointment in two weeks time.
Then there's the Saturday evening ball and show, THE show. Team, you do us proud every single year (you know who you are!). Girls and ladies, you do us proud standing so united and confidently together as one. Dads. ... what can I say?! Except that G's daddy won't join in with the dad's dance anytime soon!
Each year everyone shows off their sparkle and their character. And this year I couldn't have been prouder when G joined in with the junior dance (thanks to the wonderful kids club helpers for your persistence!). I could have quite literally burst when G was doing her little twirl round, and her cute bum wiggle, and even when she totally lost the plot as Olaf had come on stage! I love the bones off that girl. She never ceases to amaze us.
But aside from the incredibly informative seminars, and the eye watering dance moves, what I love the most is the Turner Syndrome family. Everyone has so much love and respect for one another-girls and families alike. Everyone understands. I understand. I'm understood. My concerns are echoed, my fears are shared, our highs are celebrated, and everyone wants to share their thoughts and experiences so to help one another.
Each year our family grows, we meet new families but we all have one thing in common. One thing so very precious.
We laugh, we cry, we worry, we calm one another, we eat, we laugh, we drink, we listen, we advise, and we cry a little more.
So for this one weekend each year, I wouldn't wish to be anywhere else. I couldn't wish to be with anyone else. And I know that for the foreseeable future (and beyond), on this autumnal October weekend, the TS conference is where the 3 of us will be. My fantastic husband, our stunning daughter, and our TS family.
So for our TS friends old and new (hurrah for finally meeting the fabulous W family and their daughter who was G's friend even before they had met!!), so long but not farewell xxx
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