I thought I had been woken early this morning by the cat wanting her normal morning cuddle, I looked at my phone to see the time thinking I would have at least another hour before breakfast time but no it was 10 minutes until my alarm was due to ring. I pushed my cat away, much to her annoyance and dragged myself out of bed, I had a feeling that today was going to be a hard day.
Livvy had cried at bed time again for no reason other than she wanted to, small sobs into her pillow, I’d give anything to know what makes her so sad. It’s easy to blame XP but what aspect of XP is getting to her? If I knew I could change things, I could make her see the best parts of her world.
I had to go into school to talk to her teacher this morning, I knew the start of a new school year would result in teething problems whilst everyone new that is working with Livvy gets to grips with what is required to keep her safe. Whilst talking to her teacher I looked over to Livvy, she was listening with a look of concentration across her face, taking in every word of what I was saying. Livvy has this amazing ability to appear so fresh eyed and care free, I wish I could pick her teacher up and place her next to her bed when she quietly sobs into her pillow, maybe then she would see that yes I am a concerned parent but I have a justified reason to be concerned. We all care for our children and want the best for them, I sometimes feel like I’m looked down upon, like all is well with the world and I should reign in my concern as ‘Livvy copes so well with everything’. If she copes so well then why do I hear her cry?
I drove away from school with an ache in the pit of my stomach, somedays I just want to keep her close to me, keep her safe. The weather forecast has suggested that temperatures could reach 30 degrees today, the UV levels will inevitably be just as high. I drove away with tears running down my face, with Roxettes ‘joyride’ playing loud, a song that takes me back to my own childhood, I think I could just drive and drive keep on going. Somedays are hard and some days are unbearable, a combination of different things going on in my mind, waiting for her last lot of surgery results, the warm weather making a return, gaining trust in new teachers, listening to her cry, having building work going on at home and not leaving Eddie out in this XP medley that is my life. Somedays I could just drive and drive and not look back. It’s not just one thing it’s so many little things, like spinning plates in a circus show, I spend all my days spinning and spinning but every now and again one falls and it sends all the others spiralling out of control, I reach down and try to scoop them all up but it’s too late and they all hit the ground smashing everywhere and I find myself crying in front of the teacher, crying in front of the builders and crying in front of Eddie and Livvy. And the worst part is I don’t even know why I’m crying, so many reasons to pick from but I can’t tell you which it is. I understand why Livvy can’t tell me why she cries at night as I can’t tell you why I cry other than its the reality of living with XP.
As always I’ll pick myself up dust myself down reach for the lip gloss and dark sunglasses and pick Eddie and Livvy up from school in the knowledge that I’m doing the best I can but somedays I can’t keep all the plates spinning no matter how hard I try.
the brightest shadow 
Sadly, there will be bad days yet these are a necessary part of the process. As difficult as they are, they do offer hope which is mostly seen through hindsight much later.
The relentless pace of life will continue; the kids will grow up; the malady will lurk silently in the background – an elephant in the room. Despite this, there is always something joyous to be found no matter how small or insignificant it appears on a bad day: your blog is testimony to this.
Personally, today got off to a bad start for me. I then looked on FB and there was a post I wrote 3 years ago. I was thanking a brain surgeon, Eben Alexander. His book, “Proof of Heaven” about his near death experience with meningitis ultimately explained the purpose of the sole butterfly which adorned the book’s front cover.
Our wee boy Nipper, passed from dengue fever in 2000. Meningitis was listed as one of the 17 secondary causes of his demise. After his funeral in Manila I kept seeing butterflies with brilliantly coloured dark green wings, hundreds of them. They had obviously existed before when I lived there yet I was only becoming conscious of them for the first time: believe it or not those tiny insects made me ponder many things and, in a childish way, I wondered if they were angels (yawn) helping me.
4 kids and 12 years later in Canada, my wife had to surrender her bits and pieces. She was very sad as the boy’s home, her only remaining physical contact with him, would soon be no more.
We did not speak on the journey to the hospital. I saw her into her ward and then headed off to work. A nurse called me back and asked if I wanted to accompany her to the operating room (they do very strange things in Canada). Once in the pre-op room they rolled her gurney to its waiting place. I had an urge to glance up at the ceiling. Painted on the ceiling, immediately above my wife, were 2 butterflies with dark green wings! I bit my lip hard to stop crying: my wife saw it and gasped too.
Then 9 months later I read Eben Alexander’s book in a pub where I literally cried into my beer despite being sober! During his near death experience, he flew to heaven on the back of a butterfly.
Even in the darkest and gloomiest of times, hope does exist!
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💛xxx
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