Being born with physical difficulties means that there is very little Edith is able to enjoy. She has a short attention span and will only tolerate a small amount of T.V in one sitting and is very limited to what she can play with independently. Unlike most children Edith is not able to run around in the park, go on the swings; climbing frame; slide, explore new areas, jump in puddles, ride a trike or approach and interact with children of her own age. As her mum this is heartbreaking to watch at times but as time has gone by I have learnt to see everything she can do and this makes our world so much brighter.
One of Edith’s absolute favourite things is music, not nursery rhymes, no no no, music you can dance too. Her favourite thing to watch on TV is music videos – favourites include Justin Timberlake, Clean Bandit, Ed Sheeran, Bruno Mars and many more. We recently acquired a walker for Edith, this bit of kit was a fair few quid but it was worth every single penny…
Primarily the walker is used/meant for walking (obviously) and the first time Edith used one the results were breathtaking. We had never really thought about what might happen if Edith had the opportunity to try and take steps instead of being in a stationary standing position. I learnt that there was an opportunity to try this marvellous piece of kit out and naturally I grabbed it with both hands…
This was the moment I knew that Edith just had to have one of these.
After a couple of weeks of trying out the walker I decided to put Edith in whilst we were listening to some music, I wanted to hold her hands and show her what it meant to dance. I loved dancing when I was a child and when I was pregnant I dreamed of taking my little one to dance lessons and having them make up routines and put on shows with their cousins, as I did. By this time Edith had developed a love for “Can’t stop the feeling” by JT so this was the song of choice. As the song began, a truly wonderful thing happened that at first sight reduced me to tears. Unfortunately I was unprepared to capture the first instance on video but this is one of the subsequent recordings. When you see the video you will see Edith bouncing up and down like a loon; I see that too but I also see a child that has no strength in her arms or legs, use them in a way I hadn’t seen before. I see her moving to a beat; not in time to it but because of it, for Edith’s brain to make the connection that music is for moving and dancing too was truly remarkable. It gave me hope and an overwhelming feeling of total happiness.
I make a point of doing this with her as many times a week as possible. She can only tolerate it for short periods as it uses every fibre of her being to move in this way in an upright position. We take for granted how much effort it actually takes for a child to just hold their head up let alone dance. It’s not right that any child should be robbed of this simple yet pleasurable ability and we are so lucky to be in an age where things like this, for children like Edith, are possible.
Another thing that Edith loves to do is smile and laugh. I can be having the worst day but I look at her and she smiles or laughs and literally all of the crap disappears. For all the things that Edith can’t do, I will be forever grateful that she can do these simple things. The dictionary describes a smile as ‘a pleased, kind, or amused facial expression’ which is pretty key with Edith as facial expressions are a major part of her way of communicating. When she smiles and laughs it means that the part of her brain that tells her body to do this is functioning, so it’s so much more than what we can see, it’s hope.
We have so many videos of Edith laughing, too many to post but I have made a short video with a small glimpse at some of her giggles!!
I hope you enjoyed those as much as I do.
I can’t describe the infectious joy and laughter this little girl brings to so many lives. After every thing she has been through she still manages to keep smiling and laughing. She is my inspiration to get up, pick up and keep smiling 🙂
Tomorrow is D-day and she faces her life changing operation, although I really do believe it will be a change for the better.