Thursday, 22 August 2013

Superheroes

The following post is written for Learning Disability Week - an annual awareness-raising campaign organised by Mencap. This year it takes place from 19-25 August and will celebrate people with a learning disability, their families and supporters by asking the question; 
'Who is your real-life superhero'?


A real-life super hero to me is inspirational and courageous. They have the seemingly superhuman ability to come through the darkest of times, to keep fighting when others have given up and to see the faintest glimmer of hope when the odds are stacked against them. They keep trying, face every challenge with determination and achieve their potential through hard work. 

I hope over the last two years that I've shown you some of the wonderful things that having a child with additional needs brings. 

Here are some of the reasons why Ella is my superhero... 

courage

determination 

She's shown me the world from a new perspective

she's inspired me to try harder and do better.

We've had our fair share of heart ache dealing with Ella's 'arch enemies' (feeding issues and heart surgery) and it's only recently that I've felt able to box that period of our lives up, put the lid on tight and walk away.  I'll always worry that one day we might have to re-open that box - I'm a mum, nothing will change that.  But, for now it can just remain in the far reaches of my mind and gather dust.   In hindsight, we've been very lucky.  An amazing 'supporting cast' of nurses, doctors, surgeons, speech therapists, physio's, nursery staff, play specialists, dietitians, friends and family have helped our little super hero win many a battle along the way.

Through having Ella, we have had the fortune to become part of the amazing Down's Syndrome community (making friends both locally and through social networking sites). We share proud moments, advice, our bad days and sometimes we unfortunately share grief and loss when one of our wonderful children gains angels wings. 

So, when thinking of super heroes, I couldn't just mention Ella. Our community is full of them - amazing children, parents and families who have had so much to contend with.  They are truly inspirational and have taught me the true meaning of love, patience, compassion and hope.  Here are some of my superheroes from their own perspectives... 

Laura - mum to Milo


The unconditional love that I feel for my superhero, is such an intense sensation that I never thought it possible. Following a traumatic pregnancy where we were told that the complications surrounding his diagnosis of Down Syndrome would mean that he would never survive the pregnancy we were jubilant in the birth of our son ‘Milo’. Now 10 months old Milo has taught me so much along his difficult journey, he is my true superhero. Plagued by illnesses, needing 2 lots of emergency open heart surgery followed by a whole medical dictionary of complications Milo and I spent the majority of his first 6 months anxious in hospital. He has taught me the art of patience, of determination and above all of finding hope when you are told that there is none there to find. He has turned my happy world upside down and painted it back again with a new more vibrant set of paints with greater depth beyond which I could never of imagined xx


Rachel - mum to Florence

Superheroes have superpowers right? Well that means our daughter is a superhero too. Florence was born 20th November 2010 and since that day our lives have changed in ways we could never have imagined. Superheroes change into their costumes and save the world, and then they return to their normal lives. Florence arrived with her pants on the outside and has transformed us and we never want her to change. She has fought through four lifesaving surgeries with her oesophagus, heart, liver and peg insertion and countless hiccups but she never wavers and always comes back stronger. Florence has downs syndrome, meaning that she has to work harder than her peers to achieve each milestone, but work she does! Every achievement, every breakthrough, and every hurdle she overcomes like learning how to walk whilst carrying her milk machine in a back pack, leaves us in awe. Everybody has a potential superhero inside of them but when you have learning disabilities those superpowers shine through and we couldn’t be prouder of our little superhero xx

Florence

If you are lucky enough to know someone with special needs or a disability, you too know a superhero xx




She is clothed with strength and dignity and she laughs without fear of the future.
Proverbs 31:25


   

  





Wednesday, 21 August 2013

Summer fun...

We've had a quiet few weeks.  No holidays planned this summer as the house continues to take up our time (and money!).  However, we do have several weddings to go to including my brothers in September.  Ella and Lucy have been asked to be the flower girls which is very exciting.  Their gorgeous dresses and shoes have been bought and I'll obviously tell you all about it after the event -we can't wait! 

Ella continues to be a loving and caring big sister. Lucy loves watching Ella and always has a smile for her.  In fact life is all too exciting for Lucy at the moment and daytime naps are scarce!...



Ella is really into dancing at the moment. We went to a wedding evening reception recently which had a band, DJ and big dance floor.  Ella stayed close to where we were sitting to begin with, just taking it all in.  As the evening went on, she slowly moved closer and closer to the dance floor and you could see she was really wanting to go and dance but the loud music and other people seemed to put her off.  Then 10 minutes before we had to leave she plucked up the courage to step onto the dance floor and do some dancing.  She loved it, especially chasing the disco lights around the floor.  Unfortunately, I didn't manage to get any photos of her in action but I'll be poised with the camera ready next time! 

Her speech and signing still come on every week.  She is managing some two word sentences now - 'black cat', 'blue car' and we get 'oh-no cry' when Lucy is crying.  She is now being seen by the SALT assistant who is doing 6 fortnightly home visits.  We have several things to work on. Getting her to blow through her mouth - cue straws, tissue paper balls and bubbles! Encouraging the two words/signs together and building upon the speech sounds she already has.

I will leave you with some pictures of what she's been up to. Pom pom fun, garden play, football at Granny's (which she can now kick) and lots of pretend play with her tea set and picnic basket...  










Happy summer everyone xx

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