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Always Choose the Tutu!

Sarah Kay by Sarah Kay Additional Needs

Sarah Kay

Sarah Kay

An honest (and hopefully positive!) chat through the rollercoaster journey we have found ourselves on; hopefully to raise awareness of HIE and supp...

Last month was Heidi’s birthday.

In previous years, this has been quite an emotional day for me – bringing back memories of when she was born (she suffered an HIE event, a lack of oxygen, needed resuscitation and was really quite poorly).

This year seemed different though, and I looked forward to it, her day, and a chance to celebrate how far she’s come.

We planned a little party with close friends and family, and all was going well, until the week before when Heidi fell ill.

Now it’s not uncommon for Heidi to get chest infections – she’s non-mobile and has a trachi, and is just one of those things that we are almost always waiting for.

This time was different though – her chest was fine, her sats (oxygen levels) were good, and she didn’t sound rattly.

This time it was her tummy, she was bloated and uncomfortable, and we didn’t know what the best thing to do was.

Thankfully we have open access to our local Children’s Unit, and they know us well.

After a few trips in and out, we were given antibiotics to treat Heidi for C. Difficile, an infection which, we have since learned, most commonly affects people who have recently been treated with antibiotics, which Heidi had.

She was given them for pseudomonas, which is common in those who have a trachi, which is notoriously hard to shift, which wasn’t causing her any problems, which is annoying as the antibiotics not only upset her stomach but also triggered seizures, which had been otherwise under control for almost three years.

Aaargh, the challenges hey!

The good thing was that Heidi was quickly settled and stable, but the bad news was that we had to cancel the party, due to the chance of not only passing anything on to others but of her immune system being lower than normal and so susceptible to picking something else up.

At the risk of sounding like a spoiled brat, I was gutted. Why, of all the weeks, did Heidi have to be poorly now?

Of course, I know it’s not her fault, and just wish I could make it better when she’s under the weather, but it was one of the few weekends where we had made plans; friends of ours were moving to Australia and having a leaving do, my sister had booked to come over from Holland, another friend’s little girl was having her birthday party, so it really was meant to be a weekend of social-butterflying for Heidi.

We even had outfits planned for each event, that’s how much we had been looking forward to it all.

Did you used to have a “best” outfit when you were younger? We did, saved especially for only the most important of occasions.

I think my Grandma even had a “best” tea and coffee set, and “best” cutlery!

The absolute best outfit this year was courtesy of Auntie Rachel – a tutu no less.

Anyone who knows me knows that I’m not the girliest of girls, and Heidi often rocks a pair of leggings (much more practical when wearing AFOs, at least that’s my excuse) rather than a dress, but we were going to go all out for the birthday girl this time.

When the party didn’t happen, I learned an important lesson – don’t save things, don’t wait for the weekend, don’t miss out on any opportunity that comes your way…

Basically, always choose the tutu – wear it any day of the week, not just when you have a party planned! No-one ever knows what’s around the corner, but I guess with our kids, we know that things can change quickly, and plans are often cancelled.

We rely on friends and family understanding that, knowing that we always do our best, but sometimes fate just throws a curve-ball.

Heidi soon recovered, thank goodness, and the party can be re-arranged. I quickly got over my sulk too, feeling rather childish at the way I reacted…in my defense, your honour, I was very tired!


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