When we first found out Tilly had Smith Magenis Syndrome we were confronted with a whole load of symptoms, characteristics and medical words that scared the bejeebas out of us! You have to live through receiving a diagnosis that's life changing to truly understand the impact, especially if that diagnosis belongs to your child.
Some 3 years on from diagnosis I felt I wanted to take apart some of these phrases that ripped my heart out back in those early days and look at what it really means for Tilly and our family. Is it truly how I feared it would be back then in those dark days? Is SMS really a list of issues that would steal our lives away, destroy our dreams and tear us all apart?
Hidden amongst the many terms within that life-changing diagnosis sat the inconspicuous phrase, 'gross-motor planning problems!' So my child has gross-motor planning issues...what does that mean in our reality.
Problems with gross-motor planning involves big movements, sequencing and manoeuvring around life. Often it rears its head in the play park, on the climbing frame, on the slide and any other activity that requires a level of body sequencing to accomplish a task!
The challenges Tilly faces were highlighted beautifully just recently at a friends birthday party. As other kids played and climbed and laughed Tilly became lost in concentration, trying to work out what on earth she was doing wrong on the ladder, it looked something like this...
About a minute later it looked like this...
and as the other children leaped, climbed, pulled themselves over and under and swung, including my 2 year old,
Tilly remained like this!
You see Tilly can't just climb and swing and manoeuvre as naturally as all the other kiddies. At 2 years old my Busby is giving me heart failure with his ease at getting way too high, way too quickly! At 2 years old these large movements and his sequencing of them are instinctive...at 6 years old Tilly still is not there, she has to stop, work things out, try out different things until she has it sussed!
She is still the child with the massively long queue of kids behind her on the slide as she tries to fathom how on earth to get her body into the correct position. She is still the child stuck in the soft play area because she just cannot see that she must put her knees down to move on. And we are still the parents climbing up the 'no adults allowed' ridiculously small maze of tubes and tunnels to rescue her from multicoloured prisons.
But she is determined, she is amazing and she will ALWAYS want to do it herself, regardless of how long it takes her. And this is why as the other kids leap and play and laugh, it's Tilly who has me clutching my face in joy, trying not to cry with pride as she finally realises what to do!
It's moments like these that I call magic! That have me running for my camera full of happiness. Look Tilly did it, did you see that, isn't she amazing!' The other mums around me smile and nod!
And please don't misunderstand...it's not that I enjoy watching Tilly struggle, it's not that I want her to find things challenging, it's just 3 years on from diagnosis, Tilly is just Tilly and she is awesome! Everything may take her longer but that doesn't mean I can't leap for joy! The difference three years on from diagnosis is that I see Tilly again, I do not see her syndrome all the time like I used to in those days of heartbreak and shock!
Imagine if you were dieting and had 100 pounds to loose and every 10 pound you lost, people put on a sad, consoling face and said how sorry they were you still had so much more still to loose instead of celebrating and cheering! How hacked off would you get? Well that's how I feel when the world sometimes looks with a sympathising face at me when Tilly finds things challenging! People can sometimes be so quick to only see the disability, I know that place, I was there once!
People often don't truly 'get' why I am so genuinely thrilled at the little steps when we are still so obviously miles and miles behind on the journey! But you see the journey is laced with magic, even if it is slow, laboured and at times heart-breaking. It is a journey that can thrill the soul when you finally learn to just see Tilly and not her disability or syndrome! That viewpoint makes a huge difference! That viewpoint needs relationship in order to foster it!
And finally, long after the other children have moved on, my beautiful Tilly finally reached the slide to zoom in victory back down to earth!
And then ignoring Mummy's squeals of joy and cheers she raced back round to do it all again and this time she has remembered how!
And now her own joy matched Mummy's!
I know Tilly feels like she can achieve anything! She knows she has magic! I am so proud, I love this child...
this child who stays strong and never gives up, even when the challenges remain ongoing!
Of course the magic of my other kiddies, zooming to the clouds like proficient monkeys is not missed either! All of our kiddies are wondrous
My beautiful Poppy...
and fearless beautiful Busby who even got his daddy stress-twitching with his bravery.
But there is a different magic in seeing your child who has extra challenges refuse to give up and find a way!
My child has gross-motor planning issues, but she gets by, delights us in the process and is a star!
Stuck is never the end of the story!
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It's time for the
Inside-Out Link Up!
Grab the button
and then link up your posts!
Post about LOVE, CHILDREN, BLESSINGS, THE ORDINARY OR NOT SO ORDINARY THAT HOLDS MAGIC IN YOUR LIFE!
POST ABOUT WHAT'S IMPORTANT TO YOU, WHAT YOUR HEART HOLDS DEAR!
SHARE YOUR BLESSINGS...WHATEVER THEY MAY BE!
LET'S CELEBRATE WHAT'S ON THE INSIDE AND
THE RAINBOW COLOURS OF LIFE!
WE ALL HAVE A HEART FULL OF MAGIC TO SHARE!
( This link-up is inspired by my current fundraising/giveaway weight-loss journey, raising funds loosing 50 pounds for orphanage 50 at Reece's Rainbow. It is a journey to health celebrating the me that is me at any size...it's what's inside that counts! Do feel free to join in and use the linky to share your own progress if you are on a journey to health...but any weight loss links MUST focus on 'you' and not just a number on the scale! You are wonderful no matter what that number is!)
I love hearing more about Tilly. Thanks for sharing :D
ReplyDeletei love this jane!
ReplyDeletei agree totally, I dont like seeing william struggle but he is determined and the outcome is so worth it and then he is proud too and tries things again. Dont our kiddos just rock?
You know how much I love hearing about dear Tilly so you know that I love this post! She is one determined, motivated little girl and every milestone should be celebrated like there is no tomorrow! Bear have Poor Fine Motor Planning. Obviously not the same as gross motor but it extends more into grasping objects, pointing, using a spoon, making signs to communicate, pulling on clothing, etc. By the time the signals from her brain reach her hands, it is all jumbled. Anyway, Tilly is a rockstar!
ReplyDeleteLove your comparison to the weight loss pity...so true!
ReplyDeleteGreat photos! I really like your new "banner" (I think the word?)
I absolutely love her determination and drive to figure things out! Yay for Tilly! Shouting for all your accomplishments big and little!
ReplyDelete