There is an old saying in football “It’s the hope that kills you!”

This is also true when you are dealing with a very sick child

I’ve spent far too much time in children’s hospitals over the last year,  far too much time seeing the parents and loved ones of small children struggle to cope with their child’s diagnosis. It’s not seeing the tears or the despair that hits you hardest, it’s seeing the hope etched on their faces, the belief that somehow, some way things will be ok.

I’ve seen that look on my own face, caught my reflection in the glass as I waited, composing myself at the door to my niece’s room before painting on a smile and praying she would believe it. Being around sick children changes you, being in a pressure cooker of emotions, battling fear and hope at the same time. knowing sooner or later you are going to succumb to one of them, it causes you to re-evaluate things

Walking through the ward you pass families going through a range of emotions, you see a lot of tears, a lot of consoling and comforting,  you see lots of guilt, irrational, ill deserved guilt, that something a parent did or didn’t do has caused this, it’s completely illogical of course, in the vast majority of cases no matter what a parent did or didn’t do their child would have ended up where they now are. However with all the varying emotions jockeying for position in a children’s ward, logic has to wait outside in the corridor.

Above all of these, pressing down on the place like an increased gravity, there is hope.  No matter how hard to try to push it down, to bury it with logic, pragmatism, rational thought it won’t stay there. It’s like a punch drunk fighter, getting repeatedly knocked down but time and again he struggles somehow to his feet, only to set himself up for another hit, everyone in the arena silently prays he will stay down but at the same time they cheer when he gets back up.

I saw the parents of a beautiful little girl, not yet three years old, after they got the news from her doctors that there was nothing more they could do for her, I felt my heart break as her father told us of their news. These were good people, they helped my sister and brother in law immensely when my niece first came to Kings College Hospital, their little girl was only just a bit younger than Olivia, while no one ever deserves to get that kind of news, these people certainly didn’t. Despite this, despite every set back in his daughter’s fight, despite every piece of bad news they had been dealt, I could still see the hope in his eyes, even if the only hope that was left was for a miracle, it was still there.

And that’s the flip side of it, as damaging and debilitating as hope can be, we need it, sometimes it is all that sustains us

When you’ve been walking through a long dark tunnel for long that you no longer remember what the sun feels like, if you see a light at the end of the tunnel you will rush to towards it, even at the risk of it being an oncoming train.

I’ve sat by my niece’s bed after her surgery and felt so many different things, I’ve felt sad, heartbroken, to see her lying there. I felt so proud of her I thought my heart would burst for how brave she has been, no 4yr old should ever have to be brave but they are, far braver than you or I, not weighed down with an adult’s self pity or “why me” attitude. I’ve felt angry, angry at the world that a child should have to go through this, angry at myself because I can’t fix it, I can’t change places with her, angry that I can’t drag what’s wrong with her into a room and beat the crap out of it to make it leave her alone. I’ve felt fear, been more scared at times than I’ve ever been in my life but it’s not these that have kept me awake at night, it’s the hope.

I’ve come back from the hospital and sat in my flat and I’ve sought out hope, the way an addict seeks out a hit, I’ve craved it, I’ve prayed for it, I’ve even feared I wouldn’t find it. Like an addict I’ve felt shame that I needed it, weak that I couldn’t survive without it but at the same time comforted that I had it because it’s that hope that gets you up the next day and keeps you going.

I will cling to hope every day till my niece is better, hope that once she is she will never have to go through something like this again, hope that we can give her all the love and support that she needs to get through this. Above all I hope for her that as an adult she never has to deal with watching a child she loves go through something similar

I have set up a GoFundMe Page to help with Olivia’s on going medical expense

Here is the link: http://t.co/A443ySJtyn

Any help would be greatly appreciated