Disney, as I’ve mentioned holds a special place in my heart. In the past 2 years we have been fortunate enough to visit Paris twice and last May to Orlando. When we found out Andrew’s kidney function had declined to the extent where he needs a kidney transplant we decided a holiday was required. His doctor said we could take a holiday before Andrew starts the process of awaiting his transplant. I was surprised that Andrew decided he would like to go back to Disney World. It made sense though. Where better to go to get away than the most magical place on earth?
I was completely against the idea to begin with. Why would I go on holiday with one of my children missing? Why would I return to the place I knew the next time we’d go to would be as a family of 5? How could we go only as 4?
Everyone I spoke to thought it was an excellent idea. Perfect. Lucky you. I didn’t feel lucky and it didn’t feel perfect. We were taking a holiday to try and take a moment to breathe. A moment to pause in the middle of this void we had fallen into.
There was no excitement when booking. It was so different to last year when we had booked to go to Florida for the first time. Every time I felt deflated I tried to think of Annabelle and Luke. The happiness they deserved. We had spent the months prior to Christmas counting down to Lexi’s arrival. They had been denied that happiness and if we had a chance to bring them some now I felt we had to.
So with little less than 4 weeks to go we were suddenly booked for 2 weeks in Orlando. The school had been more than understanding. I can’t thank the school enough actually. Both the head teacher and Annabelle’s class teacher and teaching assistant have been so lovely to us. I was upset that we were going to be going during school time but with hospital appointments the only weeks we could do were during school. The school authorised Annabelle’s absence. There was finally a box to tick that we fitted into, family in crisis. I suppose our situation was one that was very fitting of the category.
I failed at any excitement in the lead up to our holiday. We instead seemed to be faced with even more challenges. First Annabelle fell ill with a chest infection and had to be taken into hospital where they found she had pneumonia on her left lung. I couldn’t believe it when we were at the hospital. They moved us from A&E to the children’s ward. We were literally directly under the maternity triage where the doctor had first told me it was likely Lexi would die. It is an experience I hope I don’t have to repeat. I would give anything for neither Annabelle nor Luke to ever need to be in a hospital. I’m so happy to say it very quickly cleared up with strong dose of antibiotics and within a few days she was back to herself. Being back at the hospital was not something I wanted to do, ever.
The same week Annabelle was in hospital Andrew’s legs had swollen so much he had to go to get a blood test. There we were again back at the hospital. I think I need to lower my expectations of life. I need to accept the reality that for Andrew there will be many, many more times I will take him to the hospital. The doctor explained that Andrew was just starting to see and display the effects of the low kidney function. She commented on how remarkably well he looks for someone with his condition. My husband is remarkable. I have never once heard him complain of the issues he has faced with his health. Early in December he was told he needed to stop going to the gym something he has enjoyed doing for the past 10 years. He had to give up playing football when he had his pacemaker put in. Still he didn’t complain. I don’t know what it’s like for him but in my eyes he deals with it amazingly.
Thinking we were finally on track to getting on holiday a week before we were going Lukie came out in spots. To begin with we thought it was chicken pox. In the end it turned out to be hand foot and mouth. And then came the snow. The day we were due to leave snow hit Kent and the roads were a nightmare. Despite all of that our taxi arrived exactly on time. I think with everything that had happened i didn’t expect us to leave so when the taxi came it hit me that we would be going. It was horrible leaving the house. Much worse than I had anticipated and I cried and cried for my little girl I felt we were leaving behind. It didn’t seem right to be going without her. When we arrived at the hotel at the airport I realised I’d forgotten part of the buggy. So back Andrew went to the house to collect it and returned to the hotel. I don’t recommend packing while your brain can’t focus. It is a wonder how we ended up with only forgetting that.
When we were finally up in the air I felt all the emotions of Lexi dying hitting me again. Since the day Lexi died I’d been looking up to the sky, talking to her. Envisaging her in heaven amongst the clouds. And there we were flying in the clouds, still unable to see or find her.
We spent two weeks in Disney World. Two weeks doing our best to create magical memories not only for the children but for us too. Memories of smiles and laughter to help dull the sadness and pain. I’d like to say it was all magical, that all the sadness went but it didn’t. It was the same as being at home with the added benefit of sunshine. There were good days, really good times of laughter and bad just like at home. It felt very strange to have strangers starting conversations with us expecting us to be a normal happy family. We played the part well and by continually asking questions of others I avoided mentioning our situation. Not wanting to spoil another persons holiday. That in itself was hard. To not mention Lexi was suppressing all the love we feel for her. We didn’t have to avoid talking about her though because to her brother and sister she was very missing too. I was surprised by how much they talked about her. The hotel we stayed at in Disney World was covered in stars. Annabelle told me what princesses would have been Lexi’s favourite. When we walked into the bakery on main street a member of staff walked through crowds of other people and handed Annabelle and Luke a complimentary Mickey cookie. From Lexi we decided. The moment Annabelle and Luke walked into meet Mickey mouse on the first day of our holiday showed the smiles and excitement they so deserved. And right next to them in the picture, a star.
I smiled, laughed and cried. I will miss Lexi no matter where we are in the world. I think I’ve started to realise though that there can be happiness still in life and that doesn’t mean I don’t miss her but that I am keeping my promise to her. To live every day to the fullest. Or at least trying my best. And while we walked through Epcot we came across a band playing “Remember me” from Coco. And we will. We will remember you Lexi in everything we do.