Yesterday morning, I woke with the first line of, ‘The Long and Winding Road,’ by The Beatles playing in my head and it’s been playing on repeat ever since. This seems to happen to me on a regular basis, as if my life is being played out on a big screen and the tunes I hear are all part of the thumping soundtrack. I can vividly remember looking at Faye on our first night at home together, after her birth, and hearing, ‘On the day that you were born, the angels got together and decided to create a dream come true,’ by the Carpenters and of course, as our first born she was a dream come true – although, not quite in the way we had imagined. You see, six months later, Faye was diagnosed with a rare syndrome which meant that she had developmental delays and learning difficulties. I know now, that her difficulties taught us to appreciate the small things in life; to be grateful for what we had and to not take life for granted. This is the message behind the poem, Welcome to Holland by Emily Perl Kingsley, which suggests (by using the metaphor of a trip to Italy, as a typical birth and child-raising experience, being unexpectedly replaced by a trip to Holland, as the experience of raising a child with additional needs) that even though life didn’t turn out the way we planned, there is still beauty to be found. The soundtrack at that time was playing Barry White, My First, My Last My Everything, with Faye being ‘some kind of wonderful,’ but all consuming none the less, and just a little off-putting when it came to having more children. In all honesty, there were times when I really struggled with her diagnosis and I grieved for the loss of the ‘perfect child.’
The long and winding road
That leads to your door
Will never disappear
I’ve seen that road beforeThe Beatles
I wonder if this is why I now have the Beatles joining the soundtrack. After all, in some ways, like the song says, I have been on this road before – I followed a diverted traffic sign and got lost. I lost the future that I was hoping for; I lost my identity – given I went from career woman to carer; I lost my temper as I listened to well meaning people tell me that I was strong and that I had been chosen, because people are sent the children they can cope with and I lost my way, as I grappled with a whole heap of negative thoughts – I was being punished, I was a bad person, I had done something wrong in my pregnancy, it was my fault, I was angry and I feared I couldn’t cope. Sound familiar? A bit like grief, right? There were some really dark times and it took me a while to notice the windmills and tulips and all that Holland had to offer, but in time I did, and I’m happy to say that I got to appreciate the beauty of it all. How cruel then, that at a time of acceptance and joy, and at a time when we had a future we were looking forward to, she would be so tragically taken from us.
I didn’t just hit a pot hole. I fell through it.
Has lefted full of tears
Crying for the day
Why leave me standing here
Let me know the wayThe Beatles
At three and a half years old, Faye somehow developed pneumococcal meningitis and died five days later. The night before we switched off her life support, I’d been sat by her bed and could not get Andrea Boccelli to stop singing, Time to say Goodbye. It played over and over again it until, we did… We said goodbye to our daughter. How do I live, by LeAnne Rimes was played at her funeral, which was something of a contradiction as, at that time, I didn’t want to live. I tried to make sense of something that was utterly insensible and crazily, in my dumbfounded head, I began to think that her passing was some kind of elaborate, divine plan. I became convinced that I was about to be diagnosed with an incurable illness, but knowing that I would never leave my child, the angels had come up with the idea to take Faye first. Bonkers! But it seemed to make a lot of sense to me. I reasoned that she had simply gone on ahead, leaving me to pack! I thought, any day now … she’ll come for me.
So for the first year, I existed on standby. I’d stand by her grave, with Diana Ross, and say the words, ‘If you need me, call me, no matter where you are, no matter how far.’ By the time of Faye’s passing, I had a seven month old baby daughter to look after, with another one on the way and a husband who loved me, so you’d think they would be more than enough to keep me going. But sadly, it didn’t feel it. It really pains me to say that. Such was my despair! I desperately wanted to leave. I wanted my journey to end. I wanted Faye to come and get me.
Many times I’ve been alone
And many times I’ve cried
Anyway you’ll never know
The many ways I’ve triedThe Beatles
Whilst I waited for Faye, I managed to keep breathing, to keep putting one foot in front of the other, to wake, eat, sleep, repeat and I suppose that was how I learnt to bide my time, going round and round a roundabout unsure of which exit I should take. My gorgeous daughters were (and still are) a wonderful distraction and I was able to survive for another half day, another week, another month and so on. But, they didn’t fill the hole in my heart that had been left by Faye. So, I set about trying to fill the void, stuffing it with a degree in psychology and then I started a PhD, which got me to the point when I’d been without Faye for longer than I’d been with her. That was so painful, but I’d done it by keeping busy, busy busy – filling my time / Stuffing the hole. Then, I hit a wall and crashed! I was dazed for a short while: I gave up on the PhD and I again set about trying to fill the hole with more qualifications and work – following my girls into their school as a teaching assistant. You see, I was (still am) hyper vigilant when it came to my girls, so this job allowed me to keep an eye on them whilst they were in school and be at home with them when they weren’t. Result! There were definitely some good times, however, I didn’t feel fulfilled and my life seemed to drag on without much purpose. That’s when I started to drink and to look to wine to fill the now gaping hole. Once again, there were some good times and with wine’s help, the not so good times were (seemingly) made better and the bad times? Well, they were numbed. Not good.
By the time of Faye’s 15th anniversary, I had been stuck, in what felt like a very long traffic jam, on a road to nowhere, for years and was drinking a bottle of wine most nights. I was bored, anxious, depressed, full of self loathing and shame with zero self esteem. Although, to look at me, you would never have known as I was reasonably well functioning. Little did others know that, unable to find a rubbish dump on this long and arduous journey, my car was laden with so much emotional baggage, it filled the boot and took over the back seat – thank goodness for tinted windows! At night, ‘One, two, three, one, two, three, drink,’ by Sia played, and whilst I didn’t swing from the chandelier, I did, like her song describes, live as if tomorrow didn’t exist. I didn’t think I would care if tomorrow existed or not. God, it was bleak! I realise now, that the problem with the, ‘stuffing method,’ is that it simply stretches the hole. Nothing is going to fill it. It took getting sober and a cancer diagnosis to make me realise that.
But still they lead me back
To the long winding road
You left me standing here
A long-long time agoThe Beatles
I realised that I had to find a new way of steering. I had to find a way of living a full and happy life. When I had to tell my husband and teenage daughters that I had breast cancer, I knew that I couldn’t leave them, and once I got the all clear, I knew that life was for living. I wanted to live and not just exist. I wanted to love life again and I wanted to love me again. Self care is so important – Faye is still with us, but her soul doesn’t need her mummy in the way that my surviving girls need their mum. I need to take very good care of myself so that I can be here for them. I used to think that my life lacked purpose but in fact, my life is full of meaning and purpose because I’m a mum, a wife, I’m trying my best and, ‘I’m a survivor’ (in the words of destiny’s child) who is learning to cherish life in a way that honours Faye. Faye wouldn’t want me to live a life in monochrome – she’d want it to be full of colour! She’d want me to continue to make memories. So, sixteen years on, I’d think she’d be proud that I’m starting to tell our story and that I’m looking after myself better. I’m finally happy to be alive – I like who I’m becoming and I’m excited about the future. I might just do that PhD after all!
Don’t keep me waiting here
Lead me to your doorThe Beatles
For Faye and I, our time will come when, ‘we’ll meet again.’ Until then, I’m convinced that she is happily running with the angels, with no concept of time and so, when she glances over her shoulder, I’ll be right behind her, following her through the open door. In the meantime, I’ll carry on this grief journey – along the long and winding road with an address not recognised by sat nav. There will still be some pot holes, hidden by puddles to take me unaware. There will still be detours, diversions, road blocks, breakdowns and roundabouts. Sometimes, I will get stuck behind a wide load and sometimes I will be that wide load that others try to avoid. There will still be some idiots on the road and some drivers will appear to have a much better, faster, more reliable car. But that’s not to say, that we just leave our car in the garage, as that’s not what it’s designed for.
This isn’t the life that we wanted, that’s for sure. But, let’s carry on with our journey knowing that there is road side assistance if we need it. There are service stations to take a rest and refuel. There are lots of good tunes on the radio. We could even buy a road map to make sure we find the best coastal roads. Let’s put on the headlamps and the windscreen wipers so we can see the surrounding nature and beautiful landscapes. We could purposefully go to Holland and smell the tulips. Let’s look out for the road signs, sent from heaven, to help us on our way. It’s not easy, especially if you’re a learner driver. But I promise you, there is still joy to be had and with hope in our hearts, we’ll get there.
Like all journeys, it takes time. Time puts distance between you and your loved one and that can be really hard – time isn’t always the great healer that people say it is. But, how you choose to spend your time can be. We can look at the wreckage of our cars, be glad that we survived and try to craft some meaning and purpose. If you’re on the road with me, please feel free to give me a wave. Maybe you could suggest a song or two.
With love x