After months of deliberation, Rod and I decided that I would travel to London for my sister’s wedding to Chris and Charlie and Rod would remain in Sydney. We considered the long flight and various destinations too much for Charlotte and the possibility of a seizure mid-air or in a foreign country more than Rod and I were willing to expose Charlotte to. It was hard to set off on a holiday without them both and I still felt dreadful that Rod was missing the wedding and that we still hadn’t really had a great family holiday altogether. So, the plan was that I would only be away for 10 days and Rod had taken the necessary leave to stay with Charlie.

Seats on flights to London were getting tight (standby) so we ended up leaving two days earlier than expected. I was excited to be staying with my sister and dreading leaving Charlotte and Rod. Our flight to Hong Kong was great. Madeleine played games and watched cartoons all the way and I fell asleep for a period of time, which was great. After staying in HK overnight we then travelled onto London and were met by my sister and father at Paddington Station. I felt like I was travelling to Hogwarts!!! (the English teacher in me!!!) We were a little tired but excited to finally be in London town. The weather was great (22-25 degrees) and we enjoyed some time in London and Tetbury (Cotswolds) with the family. After five days we travelled to Helmsly where the wedding was to take place. We toured around Whitby, York, and parts of the North York Moors - a very peaceful and beautiful part of England. The wedding was magical and everyone enjoyed the amazing reception at Castle Howard (setting of the films Brideshead Revisited and Atonement).

We returned to London the day after the wedding and were meant to fly out the next evening. Seats were tight and we ended up leaving the following day instead. Once in HK we were off-loaded and unable to get back to Sydney (you have got to love staff/standby travel without your husband’s good priority). We waited five days before we could get a flight and Rod had to buy a full-fare ticket through Perth to get us home. This meant that we would not arrive in Sydney until Monday afternoon (school commenced for Term 3 that morning). While Madeleine wasn’t all that bothered about missing school, I wanted to be home and Rod was experiencing the Charlotte overload. In fact, I think Rod’s words were; “she’s broken me!” To which Madeleine replied; “Daddy can’t be broken!” So Madeleine and I stayed in Hong Kong. I took her into the city and Kowloon, as well as Disneyland! What a hoot! We made the most of a bad situation and enjoyed loads of rides and the hot weather. I think Madeleine may need therapy after the Space Mountain rollercoaster (my favourite!).

The Sunday, we were supposed to leave HK, I got a phone call from my best girlfriend, Ness, to tell me that Charlotte had taken ill and had a seizure. With a few instructions and questions the phone call ended with Rod telling me to try and get home. There was no help from the HK side as it was Sunday. So Madeleine and I raced to the airport to speak to the desk staff at Qantas. I think they were dubious of my story as there were 30 – 50 staff trying to get out of HK with each flight. We were sent away and instructed to return in an hour to discuss the situation with staff. In the meantime Rod was trying to deal with Charlotte seizing, the ambulance arriving, and ringing Qantas to ask for assistance to get me home.

Charlotte, having a seizure was my worst nightmare, however, I was somewhat relieved we had not taken her overseas!  We had made the right decision. Rod did well and managed to get us some assistance flying home. Qantas were amazing and got Madeleine and I on the next flight to Melbourne and a connecting flight to Sydney. We arrived home on Monday morning and caught a taxi straight to Sydney Children’s where I slept on my first night home. Charlotte was stable and doing well!! The kid is truly amazing. She had a febrile induced seizure, was suffering from pneumonia and was still smiling!  We spent that week in hospital and were meant to have an MRI, which did not take place. Another long story!

So, this Thursday we went in for an MRI to check for tumour, hydrocephalus and to make sure the shunt was working. For the first time since she started treatment, Charlotte cried before going into the hospital. She said she didn’t want to go and didn’t want any needles. I assured her she just had to go to sleep (general anaesthetic), they would take a photo of her head and she would wake up and I would be there! Fortunately, that was enough reassurance, along with a big cuddle.

After a long day we headed home at peak hour and when I was almost home a truck turned around a corner next to me and a fridge flew out of the truck and was hurtling toward the windscreen of the car. Thankfully, I hadn’t answered the mobile that was ringing, I wasn’t speeding and Charlotte had fallen asleep and could not see an enormous white good flying through the air and headed for our car. I am not sure how it didn’t land on the boot or smash through the windscreen of the car; but it didn’t. I must say dying by a white good is not the way I want to go! As the car screeched stop, I sat there and could not believe what had just happened. After taking the details of the driver, who neglected to secure a fridge to his ute and blocked busy peak-hour traffic, I drove home with Charlotte still sleeping!

After a long and somewhat shitty day, Erica rang to tell us that Charlotte has no signs of tumour and possibly a little hydrocephalus which they will monitor again in a month. It was a little after six and I think that my heart was just making its way out of my stomach for the first time all day! Relieved, thrilled and exhausted! Charlotte played happily with Madeleine and was none the wiser about the enormity of the day. She is looking really well and as tough and happy as ever!

It will hopefully be three months until her next scan. She will have a few clinic and neurosurgical check-ups in that time also. We have had somewhat of a breakthrough with her sleeping; following being discharged last week. It will be a week straight of sleep each night….the first time in three and a half year! YEAH!!! We had even secured the help of the sleep unit at Sydney Children’s who had a plan for Charlotte and agreed that the length of Charlotte’s disruptive time in hospital had rendered her incapable of effective sleep techniques. So, she is doing well, hopefully it will continue with more time at home and less in hospital. Our fingers, legs and toes are crossed! But anything is possible with Charlie and we rarely keep our guard down.

“Remember…there is a deeper strength and an amazing abundance of peace available to you. Draw from this well….”,  we are trying!

Love,

Beck and Rod xo