By far my favourite time of the day is around 5.30 to 6.30 am on a week-end. My household is usually asleep, I creep out of our bedroom to pacify the cat with breakfast, and it is there in the stillness of the moment that the day is just mine. The smell that hits me when the hot water hits the coffee and the familiar smell and sound of the toaster popping is a pause from an insensitive world. Today is a Saturday and I’m in this place, sat in my conservatory watching as the summer early morning sky changes from dusk to dawn. This is what I recently learned to appreciate about life. My last post left you with a tale of precautionary hope. I think so far in this roller-coaster of a journey this was truly toughest: the intoxicating option of being given an option. The management of expectation and hope I was unsure I had the ability to manage for myself or my husband, his brother and indeed our whole family. Hope is never a guarantee but is a path my heart always wants to believe in over everything.
So one rainy Wednesday afternoon in the community nursing office after a very manic morning, I sat looking at a pile of paperwork very much wondering if I should just get in my car and emigrate when my phone rang. It was my work mobile so of course I picked up. ‘Hello Charlotte, it’s Sarah here from the research department’. It rather caught me very much off guard so I left the manicness of our office and within the 20 seconds or so it took me to leave the room I had braced myself for the worst, the “I’m terribly sorry but on this occasion your bloods weren’t a match for the trial” and the “there is always things coming up in the future” kind of chat. In that very brief moment, I felt like a horse had kicked me in the stomach and every single part of my soul had broken in the thought of how on God’s earth do I tell my husband. So on the back stairs I sat and took the call.... ‘I’m just ringing to tell you that you’re in’..... *silence*... ‘I’m sorry, can you repeat that?’ I say. ‘You’re in. Your husband was a match for the genetic clinical trial, I’d like to book him in for the initial testing. I tried to call Paul but I don’t think he had a signal at work and you had both said you wanted to be contacted as soon as we knew’. It was right there in that moment I just had no feeling, no emotion no words, no worry, no anxiety, nothing... it was a surreal out of body moment. We spoke - I think - then I put the phone down. The next moments felt like I had won the lottery jackpot of like 100 million!!! BUT better, it was the prize of hope that no money can buy. I walked back into the office silent. My team were like "are you ok??" They genuinely leapt around in joy on that rainy afternoon, after seeing the fall and slow climb of their matron over the last 2 years, I’m so truly grateful for their kindness. My favourite part of this tale was telling my husband. I could hear him at work on the phone leaping for joy which I had not heard or seen in him do for so so so long.
So this is it for us, we are lucky and so fortunate to be
able to say we have been offered hope and on that rainy Wednesday we grabbed it
with both hands and with hope (I say precautionary hope) we made our first plans
to move forward because on that day we were in!!!
I dedicate this post to my mother who I lost to secondary
progressive MS in my 20’s she always taught me to never give up hope even when
the sky was dark and it was raining because she believed the clouds would one
day part. How wonderful it is in those bleak moments when someone offers you a
rainbow.
