“Blessed to Have Her Here” – Sarah

So this is my second post about Ella, who is 7 in a few weeks’ time! It’s scary how quickly they grow. In my last post I tried to keep to the point and just give you Ella’s background and how far she’s come. I thought this time I would say a bit about us and our relationship- how we manage day to day activities.

I remember when Ella was first diagnosed. The most difficult bit, I think, was the not knowing- what are we dealing with? What do we expect? And as you ask the question as many times as you can think of different ways of saying it – the answer is always the same: “We’re not sure, but time will tell!” This is what parents are told, as probably all CCDS parents have experienced!

What also was difficult was having a child that was growing but that cognitively was staying the same – that was tough. She didn’t mind – she was quite happy to carry on playing on her rocking horse or chewing soft toys, I found that difficult to understand how to fulfill her needs, she wants to play with baby toys still but is that helping her to develop? Versus I want to encourage her to use more grown up toys – but she didn’t want to or didn’t understand the concept. Ultimately, I decided that actually all that matters is that she’s happy and enjoying herself so we tried child led play.

Now, my baby is no longer my baby! She’s my grown up girl who is obsessed with Barbie and bracelet charms and princesses!! Though, luckily she still has a sporty side! Her engagement with pretend play games amazes me, her attention to detail from conversations she’s recalled and how inclusive she is with all her toys and most importantly, her imagination! I struggle to keep up with the story line, but it’s usually around getting ice cream, going to see the doctor, and then going diving or to the park! The magic of being able to listen to her having back and forth conversations, with voice changes included, makes my heart melt every single time. I guess that over time, I’ve come to realise- what does it matter? How she is or where she will get to? 3 years ago for her to focus on my eyes for more than just a passing glance would have been a miracle, now she talks for Britain and is 100% understanding and engaged in all conversations directly with her or ones she overhears!

For her to be where she is, leaves no doubt in my mind that she will continue to progress. But if she was to plateau, that would be ok too, because I know we’ve already been blessed to have her here anyway. What’s the point in trying to second guess the future? I, like many parents here, have lost countless nights worrying about the future for Ella, worrying about things that I have no control over! Right in the here and now, I am so lucky to be able to witness her grow and develop and change from a child into a little girl with opinions and expectations- of me and of life! The only hope that I have is that I can meet those expectations for her, because she deserves the world!