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Silence like a Cancer Grows

Silence like a Cancer Grows

If you asked my friends what I’d been occupied with for the last few weeks they’d probably tell you it’s my new baby. As cute as she is, she’s not the only thing keeping me up at night! You see we’re having a bit of a nightmare at the moment. It all started back in March, when Thomas’s carer took a lot of annual leave and then some sick leave, before handing in her notice in June.

I was 6 months pregnant, we were rapidly approaching the summer holidays, and we were already on our knees having been managing without her for several months. When you add in the backdrop of covid, and everything we’ve had to navigate in the last year or so, we just didn’t have any energy left to figure out what came next.

I felt trapped between a rock and a hard place. I was entering that stage of pregnancy where I wanted to burrow down and nest, not bring a stranger into our most intimate world. And we were exhausted, the idea of training someone new felt too much, but of course, it wouldn’t get any easier until we started training someone!

Very quickly I realised that finding a new carer would not be straightforward so I started planning ahead. Come September my husband was going to be expected back in the office and I would have two children starting school at the same time in buildings on separate sides of the town. Clearly, I was going to need help!

So I applied for school transport. By virtue of his disability, Thomas is eligible for free school transport. I was nervous though, I’d heard that suction trained escorts could be difficult to find, and Thomas needs one to keep him safe. I chased our application a few times, anxious to ensure things were in place.

I was going to continue to detail the back and forths we’ve had, but honestly, I could write a small novel on it. Suffice to say that this small issue has blown up enormously. We are now into November, we still have no transport, we’ve triggered a funding review which is threatening to cut our funding in half, we still have no carer, and no opportunity for respite. My husband has been unable to return to the office because I need him at home.

There appears to be a local issue with providing suction training for anyone not employed by the Local Authority which means Thomas cannot attend any service that isn’t run by them without one of us present. There is also a national shortage of carers.

It is a complete and utter red-tape nightmare. No one knows how to move the situation forward. I am literally pulling my hair out over it. But almost no one knows. I haven’t told any of my friends the full extent of the nightmare we are living. Why? Because it is boring as hell. And nothing ever changes or improves so all it is for me to say is to repeat the rant I had the first time I mentioned it. And each little thing on its own doesn’t sound like much, but the full history is huge and convoluted.

And the more I don’t talk about it, the harder it is to talk about. Sometimes I start writing messages in my WhatsApp groups and then delete them thinking they sound so random and pointless and that I just don’t have the energy to explain why it’s such a problem.

But it means I also don’t have the energy to explain why I’m not doing other things. Or the energy to hold space for other people’s difficulties. And eventually, I don’t even have the energy to contribute to the everyday chit chat.

So slowly I fade into the background. The small cracks that once lay between me and my friends have become gaping chasms that feel impossible to bridge. Made so much harder in this space and time where social connections are so torn and frayed as a result of the pandemic.

So I really need this issue resolved. Not only for the support and security it offers my family and Thomas, but because I need my energy back. I have some bridges that need building while I can still see the other side!

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Nicola Sheldon

Meet Our Blogger

I'm Nicola, mama to three awesome boys. We live in Thatcham, Berkshire with my husband and dad extraordinaire Chris along with our dog Percy and cat Fudge. I care for my second son Thomas full time and in my spare time volunteer for local organisations supporting women and babies.

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