Not going out, don't wanna stay in...

The weekends, they come around every week. They are a symbol for most as a break from a heavy week. A time where you can make arrangements, plans to go out and have fun. Take rest, recover and get ready to get at it again. Unless you are us. You see, Delilah is a complicated little soul and there is a lot to take into consideration before heading out with Delilah.

Firstly, tackling the initial “let’s go out!” This cannot be done off the cuff, it just doesn’t work. Delilah needs to know where we are going, how long we will be there and will there be a treat if she attends. This isn’t her being spoilt or a brat, it is her figuring out in her head whether it’s going to be worth the hassle. We, as adults do this too - we just don’t think about it. If it is a hassle we won’t attend and if we do we won’t necessarily be very happy about it. So we have to think carefully about where we are going, why we are going and if Delilah will enjoy it with or without a treat. Let’s face it not a lot of places are really accessible when they state accessible, which is rather irritating to say the least.

Secondly, the bumph. You know what I mean, the bag pack and dread if you have forgotten anything. It’s easier these days without a suction machine xl bibs and seating systems ‘just incase’ but still just as tricky. There’s the nappies, wipes, face wipes, cutlery, water bottle, nappy bags, bundle bean incase its cold, a big coat and a small as Delilah has special skin and can be warm when we are cold. Then the wheelchair, the heavy, difficult to push wheelchair that doesn’t like off roading and neither does Delilah if we try. The wheels are hard and she feels every little bump and twist of the wheel. The fact if its rain we are knackered, as she can’t hold a brolly and I can’t hold it and push her at the same time - and yet no one seems to have came up with a solution to this?? Mind blowing.

Thirdly, changing. We have been very lucky (touches wood) that thankfully we have never had to do a big, big change (you know the ones, where it’s everywhere and you don’t know whether to leave the clothes or burn them at home) whilst out and about but we do have to change her. The changing tables are too small and tend to be unto around 15kg as if after Delilah reached that weight her disability had fucked off and she could use the toilet - spoiler - it hasn’t. So we have to leave, we go home to change her and can we heck get her back out.

Lastly, can we be arsed? When you take all of that into consideration you then have to push yourself to get the momentum to get up, get dressed and start the fight. Delilah hates getting ready on a weekend. To her she has been to school all week, how dare I interrupt her down time, force her to get ready and go somewhere that may possibly be fun. “Don’t you know I have had a hard week? This is my day off!” She’ll exclaim to me whilst approaching the subject of going for a walk. So here we are, it’s Sunday and we once again have done nothing this weekend. I go on social media and see families out and about and I do feel a twang of jealousy. They look so happy, out playing and sight seeing. I feel guilty that my eldest two have had minimal ‘fun days out’ in the last say, 7 years… it’s difficult for them as much as it is for us. It’s also difficult for Delilah. She doesn’t understand why we want to go out, why we want her to go out and leave behind her home comforts. It’s difficult, but when we are out, we don’t half make the most of it. We try and keep her out along as possible, we will change her in the car if we must, buy her that little treat and make a fuss.

So for now, she will be here, in her spot, red crisps at hand and in reach, with her iPad and headphones. And I will be here, dreaming about taking over the world while watching it pass by me instead.

But we will be together. Tracey x

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