May Day, we're going down...

Lost for words… I am quite literally lost for words. It doesn’t happen often (I know) but there has a come a time when I have become completely stuck.

I never back down from any challenge ever, I always try and help everyone with anything and always (mostly) know the right thing to say in the right circumstances. Believing I am this person has lead me to start my level three counselling course at college… tomorrow in fact. But I am now stuck, I am lost for words and unsure what the answer is. How do we tell our kid’s that they’re right, they aren’t special but are different?

The last two weeks have been very difficult in our house. The pending back to school has had everyone on edge, the uniforms, the routines, the packed lunches, all of the appointments, the homework, the fear of new staff, new year and harder work. Delilah has been consistent in her idea that when the holidays were over she would have to return to school, properly. No more bubbles, no more isolation and no more mam 'just there’.

She also knew that when she returned she would be a part of year 5. Delilah knew, and told us actually quite often that year 5 meant harder work and growing up. It has always been a fear of Delilah’s that one day she may have to grow up and move out… which we would never expect. I don’t think any of us do, do we? We see our kids being with us forever and try not to look that far ahead. So, going back to school was a mix of emotions that I’ve bared the brunt of late. How do you answer the questions that is asked? Because Delilah has always been inquisitive, she’s always been determined and always had questions… and answers too! Cheeky bugger. But how do you answer the question that no one prepares you for?

I was prepared when Delilah was little for her breathing, her skin, her dystonia, her nystagmus, how she maybe quite significantly behind, for the fact that she may never walk, how to help nurses to take blood, how to prepare for surgery, how to do after care…. And so on and so forth, but no one, no one tells you how to tell your child that she is beautiful, amazing but different to her peers. As I write this, I am holding in every tear possible as she sits beside me happily scoffing her tuna pasta, completely unaware of how hard I am trying to hold it together for her, as I can’t answer these questions anymore with a simple ‘because you my beautiful girl, were born special’… because that doesn’t fulfil the answer for her. She wants more, she deserves more. I feel my ship is sinking...

Upon noticing lately that she doesn’t go out on an evening, doesn’t see friends or the friends she used to see are now distant, Delilah has been asking why has everyone forgotten her? Why is everyone growing up and not wanting to play dolls? Listen to barbie or play games?

Nine year olds these days are soo much more mature, they do Tik Tok dances, take selfies and wear crop tops… all of which Delilah has no understanding of why. Being diagnosed with GDD Delilah is around the age of a five year old in that sense.

When changing her nappy and get her dressed, she tells me I am treating her like a baby because I have to do all of her care. I have to lift, hoist, bathe her and apply her creams… all of which she tells me is what a baby gets, not a big girl. But if I don’t do it, who will? She can’t. She doesn’t want to be baby-id she wants to grow, but she can’t. Then there is school, she is surrounded by kids growing up, she worries herself over work and spelling tests. The idea of going to school she doesn’t like very much but when she gets there she is very happy. Then, THEN, there is comp, I now have to start looking at secondary schools, which puts the fear of god into carers like me. The idea of a new fight, the idea of the realisation and the thoughts of not being able to protect our children as much as we do now. I see her getting frustrated a lot more too when her hands shake and her legs tremor, I hear her heavy sigh every time she looks up as if she was about to move then decides not too as its too much work to consider.

All of this and much much more, has become daily conversations lately, they are difficult to discuss and often have to take a moment before I try and answer, sometimes I don’t, I reassure her that she’s special and she was born that way and that’s that. I hate that though, because Delilah wasn’t born ‘special’, she wasn’t born any different to my other two children, there was no dramatic birth or carrying on. Delilah also wasn’t born with any superhero powers that lead her to be able to telepathically reach people… and nothing about having multiple surgeries, being on medication for life, being wheelchair bound, unable to connect with others and being completely isolated screams ‘special’ to me.

And that is exactly how she feels, and I totally understand.

There is a huge, massive difference between being special and feeling special, right now Delilah feels like neither.

So, how do I help Delilah?

How do I find how I should be answering these questions? Tackling this won’t be easy, when she is unhappy, I too am unhappy. But, Delilah is a strong girl, she has been through stuff that others couldn’t imagine, she really is incredible… and that’s not just a braggy mam thing, her skin literally is amazing… never been seen before. She is amazing, she is our queen D regardless and she will never move out… she will never have to move out, and I will always be her snack bitch. Tracey x P.s all advice on this matter is welcomed!

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