When you’re great I’m always good, and when you’re ill I’m a mess

I’m guessing I’m not alone in this – when Heidi’s good (as in well, having a run of no seizures, dystonia under control, secretions settled and is happy), I feel like I can take on the world. Well maybe not the world, but I feel balanced, positive, and able to focus on the moment.

When she’s poorly, I go to pieces. Many of us are in the same boat where there’s no such thing as a “simple” cold, and the germs this winter seem to have been extra brutal. As Heidi is non-verbal, we rely on how she is presenting, a thermometer and her Sats (heartrate / oxygen level) monitor to give us a heads up if something is brewing.

At the first sign of things being awry (usually with faster breathing, a spike in temperature and high heartrate), I can feel myself jumping several steps ahead…wondering at what point we’ll need to go into hospital, what if her temperature doesn’t come down, is she at higher risk of seizures, what if this is “it”?

Thankfully we have avoided lengthy hospitals stays for some time now, but in the early years it was a different story – frequent visits, frequent chest infections, and frequent courses of antibiotics (and if you know you know, the knock-on effect that they can have!). Each time there’s the sinking feeling when you’re admitted, wondering how long it will be for, watching the monitors, hearing the beeps, and in many ways feeling helpless.

I think the early experiences must have stayed with me. I can, if I don’t have a strong word with myself, catastrophise.

Heidi had an allergic reaction a while ago for example – nothing related to her brain injury, cerebral palsy or epilepsy, and we’re still not 100% sure what caused it. As I watched a rash spread across her stomach, I convinced myself that I must have put her feeding tube in wrong (which my logic brain knows wasn’t the case at all), causing her feed to go outside of her stomach. My mind raced when I thought she would need surgery, the risks that went with general anaesthetic, that fact that it would all have been my fault… The consultant at the hospital must have wondered what on earth was the matter with me when I burst in to tears, as he quickly diagnosed an allergy, and reassured me (several times) that her feeding tube was fine!

I think it probably also comes from being in a constant state of high alert – not fully allowing ourselves to really really enjoy the good times, for fear of tempting fate, or things going wrong. Each time I go through a spell of this with Heidi, I try and remind myself that we’ve been here before, she’s a tough cookie, and going to worse-case-scenario isn’t helping anyone.

Easier said than done, but I am making a conscious effort to enjoy the now, especially as it feels like spring is in the air and hopefully the winter bugs are now out of the way for everyone!