Yesterday was Purple Day, a day to raise awareness of epilepsy. I’d meant to write a post to coincide with the day, however, by the time I was able to sit down last night, it was late and a busy day of appointments and work meetings caught up with me. I was just too tired to type.
Although being too tired to type is probably appropriate for Purple Day. After all, epilepsy may affect everyone differently, but I think the unifying factor for all parents of a child with a seizure disorder is exhaustion and worry.
My fatigue isn’t quite that dramatic at the moment, nor is it directly tied to Lil Z’s epilepsy. It has more to do with going to bed a little too late and then having to get up several times during the night to deal with a feeding pump tube with an occlusion, a child woken by the beeping feeding pump, and then the feed finishing an hour later – again waking us both up.
However, the fact that I am looking after Lil Z on my own for the next three weeks is directly attributable to epilepsy. You see, through QB’s company, we are entitled to “home leave” each year, which means they will pay for us to fly back to our “home base” of London.
Our first year we all made the annual voyage to London – and then on to the US to see my family. Lil Z was 3 months old and apart from a nagging suspicion that something wasn’t right, we had no idea that she had any medical issues. The trip was fine and we laughed about how much harder it would be the following year when both girls would be mobile.
We returned to Brisbane and life intervened in our plans. Lil Z was declared to have global developmental delay and began having seizures. We were so busy coming to terms with our new reality that travel plans didn’t cross our minds.
When we did have the breathing room to think about travelling abroad, it was a scary prospect. Lil Z’s seizures aren’t controlled and we can never predict if she will go a month or two without one, or if she’ll suddenly start having them frequently. Her seizures almost always require emergency medication – Midazolam – to stop the fit. Sometimes, after being given Midaz, her SATS (oxygen levels in her blood) drops – and she has been put on oxygen until she recovers. On a few occasions, it has taken more than one dose of Midaz as well as even stronger drugs to bring her out of a fit. And on one occasion, that increased dose of Midazolam caused her to stop breathing. The thought that we might have to deal with one of these scenarios on a long-haul airplane was frightening.
And so it came to pass that Vegemite and I travelled alone to the US after Christmas this year, with QB staying home to look after Lil Z. And now QB is taking his “home leave”, taking Vegemite to London and then skiing in France during the Easter holidays. This is what epilepsy has left us with: one person always holding the fort at home in case of an emergency.
Granted, it is hardly the worst thing in the world. Both QB and I got to enjoy lovely breaks overseas, visiting friends and family. And Vegemite has done exceptionally well from the deal – becoming even more of an experienced world traveller. But it is the loss of yet another expectation of how our family would be.
QB and I always loved to travel. Our first trip together was to Barcelona, where we stayed in a run down hotel close to Las Ramblas. We spent our days drinking hot chocolate and sightseeing and our evenings drinking wine and eating tapas and paella. Since then, we’ve done long-haul flights, short flights, train journeys, and city breaks. Active holidays and beach holidays. We have done well-planned and organised trips and trips where we’ve made it up as we go along. We’ve even done one package tour. And when we started to think about children, we both looked forward to travelling with them.
We had Vegemite booked on a trip to South Africa before she was even born. We learned that travelling with children was a completely different experience to doing it as a couple, but we still had a great time. We travelled as much as we could with her and Vegemite, being a social butterfly and naturally curious, loved it.
Although we have tried very hard to keep on travelling with Lil Z, our zeal has gradually worn down. The sad fact is that she is a home-body and isn’t happy in strange places or meeting new people. And after one particularly nervous night in a B&B on the Sunshine Coast, watching Lil Z have three seizures and debating amongst ourselves if we should call an ambulance, we haven’t tried a weekend away since.
Instead, we’ve split up when it comes to travel. Even going out briefly, we’ve started going separately, one of us staying home with Lil Z while the other goes out with Vegemite. Occasionally, we’ve left Lil Z with a babysitter while we both go out – for example for Vegemite’s ballet recital.
I suppose you could argue that its not a bad thing. After all, Lil Z is happiest at home and she doesn’t feel sad or left out. And Vegemite loves getting the extra attention. I can’t speak for QB, but I don’t mind staying at home sometimes. In fact, I’ve enjoyed having a bit of time on my own since QB and Vegemite left on their trip – even though I miss them.
Despite this, it still makes me sad every time Lil Z is left at home. I don’t want to exclude her. She is a loved part of our family and doesn’t deserve to be left behind. She’s missing out on family experiences, memories and fun.
The problem is that what the rest of the family considers to be fun experiences, aren’t seen in quite the same way by Lil Z. The other problem is that we are still working out what Lil Z thinks is fun. At the moment, there are things that make her content and things that make her unhappy – but not a lot that really makes her “happy”. That makes it difficult to tailor any activities to her.
So, epilepsy has stolen my dream of travelling to new and exciting places with my girls. It is another hope, another aspiration that I have to adjust now that I have a child with epilepsy and other special needs. I have no doubt we will adjust and that we will find somewhere that Lil Z enjoys. And that will be a wonderful, joyous discovery. However, in the meantime, I will enjoy spending one-on-one time with my beautiful daughter and try to come to terms with the fact that for now at least, I won’t be able to share one of the things I love most with Lil Z.
Oh, and if you want to get a better idea of what epilepsy means to families, have a look at Epilepsy Awareness 2013. It was made by Epilepsy Parents Australia – a group that has been a huge support to Lil Z and me.