Sometimes we have days when we just think ‘f**k this.’
Yesterday was one of those days. My husband was in hospital over night with suspected septicaemia from an infected burn injury (silly boy). I lay awake all night worrying about him then my youngest daughter woke up screaming at 5am with a tummy ache. I of course suspected it was a ruptured appendix and rang NHS direct like a crazy lady. 10 minutes later the Calpol had taken effect and she declared she felt much better and was asking for her Weetabix. But my 6 year old then woke up sobbing about not wanting to go to school and feeling dizzy. This behaviour continued right up until we got to school where by her new teacher had to physically peel her away from me screaming whilst the rest of her class sat on the carpet for register. It was a crap way to start a busy day at work.
When Ruth sent me her experience on motherhood with a disabled child, I hung my frazzled head in shame and realised that my kids small tantrums are nothing compared to what Ruth and her husband have to deal with every single day when caring for their daughter Elin. Here she shares their story.
Hi I’m Ruth. My daughter Elin is 5 years old. Huge thanks to Clemmie for asking me to write a post about Elin’s arrival into this world in 2008 for this wonderful blog. I’m honoured! I’m also a little nervous and if I’m honest, I feel a bit guilty, too. I fear I may be infiltrating such a positive and uplifting blog with a story that does not have a (fully) happy ending. But it’s my story and we lived it, my husband, my baby daughter and me. We’re still here telling the tale and loving life and feeling grateful for every second of it. So, this is the story of what happened when I gave birth and how it shaped our lives forever, before we even knew it.
I’m actually not going to focus on the birth. Not just because it was 5 years ago and I’m struggling to remember what colour pants I put on this morning, let alone remember all the gory details of the labour, but also it would make for a pretty difficult read (and probably be even more difficult to write). So I will sum up. In a nutshell, after 46 hours of labour, my little girl silently (oh, so silently) slid into our world, caught by the awaiting hands of the unsuspecting and rapidly ashen faced midwives. Silent she remained and, as the on call doctor summoned at once by the buzzing red lights would later tell us, roughly about two minutes from death. Nobody had any clue she had been in such horrendous distress, nobody had any reason to try and break her free from the little prison of my body during labour, which as we now know was slowly but surely killing her through oxygen deprivation. The joyful cry that we had waited nine months for (oh who am I kidding, I felt like I’d be waiting a lifetime) never came and we watched as a million medical staff ‘worked on’ my first-born newborn, helpless baby girl right in front of us, still not aware (how could we be?) of the gravitas of the situation, that right now we were living something that would dramatically alter the course of our world together as we knew it.
Elin spent 4 weeks on SCBU, having been whisked away from us almost immediately and ventilated in Intensive Care. I’ll tell you a secret about these first few minutes after her birth. I didn’t look at her. My husband implored me to look at her beautiful face but I saw a flash of her paper white torso and I couldn’t look. I remember my warped, Pethidine addled train of thought like it was yesterday. I thought I will not look- if I look, I will love her and I thought she was going to die. My head could not grasp what my heart had known from the moment I peed on the stick. It was too late, I loved her already. Purely, unconditionally and forever. I will regret that moment for the rest of my days.
The first chance I had, I let her down. I let fear hold me back. I would not let it happen again.
What to say about the time Elin was on SCBU? We could not hold her for 10 days. I need not explain the torture of this. I was a Mummy, with no baby. There was nothing normal about the experience at all. Just life, clinging by a thread. We lived in the hospital, sleeping on hospital beds in rooms on SCBU reserved for parents in our ‘difficult’ position. The smell of that squeezy hospital soap we had to coat our hands in before we touched her skin still knocks me sick to this day. I expressed my milk in a lonely room so the nurses could drip feed it down a tube in her nose whilst she fought for her life ( to think of the hours I wasted whilst pregnant thinking about and discussing ‘breast vs bottle’ ).We sat by her bed for 14 hours a day and tossed and turned in our hospital beds in the clammy August heat for the rest of the time. My Mum brought her a ‘going-home’ outfit and I hated how beautiful it was, how it represented something so far from my grasp at that time it was hard to imagine. I hung it on the alien furniture in our clinical room and it haunted me for days as I wondered on more than one occasion if we might have to bury her in it instead.
I coped by writing letters to Elin in those hours that turned into days, then weeks at her bedside. I reasoned, my fighting spirit finally returning, she could read them when she turned 18 (she was getting out of here, I was determined). So she would know how much we loved her, how much she meant, how we prayed and begged and pleaded 9with noone in particular) every second of the day for her life. I did not realise of course that Elin would never be able to read them. It was before the words ‘brain damage’ had been uttered, considered even (at least by us anyway). I still have those letters and I have never been able to even pick them up, let alone read them. I hope one day I will, but for now they sit in her ‘baby box’ along with her hospital bracelet and her first baby grow and everything else I still cannot look at, five years on.
My husband coped by finally going back to our empty home and putting all the baby things away, moses basket- the works, in a fit of pessimism. Then he drove back to the hospital and before he had even parked up turned around, went back home and put them all back out again. It seems he wasn’t ready to give up either.
On the 19th August 2008 we took Elin home. Due to the lack of oxygen she had suffered at birth, we did not bring home balloons, presents or cards but instead a list of diagnosis’. She had incurred severe brain damage (cerebral palsy) and a result of this, vision impairment and epilepsy. Elin is profoundly disabled and fed through a tube. She is unable to speak, or move independently. Her condition is described as ‘life limiting’. That’s what Elin’s condition is. But it’s not who Elin is. You see, nowhere in that list of issues we brought home with us does it tell you about her smile (that took 10 slow months to form). An amazing smile that (cliché alert) lights up a room. It does not give you an impression of the sound of her laugh when you ‘beep’ her nose, how she draws people into her world, how she loves to be cuddled, how she hates to be alone and does not like the dark. You would have no idea based on that gloomy list, or the list of the 13 medications she takes a day, that she is learning. That she is able to ‘bat’ at toys she likes with her good arm, learning to turn her head towards sound and light and can clearly recognise (and show visible excitement when she see’s) her Mummy and Daddy and other close family members.
It’s a terrible thing to have to admit the day your first child was born was the worst day of your life. It was. But it was also the best of course. Because it brought Elin to us, our little miracle girl. The pure unadulterated joy she brings us every single day is indescribable. The way our priorities have shifted, the wonder we see in the simple everyday things in life, the way we are grateful for every single moment with our girl. In that first breath that Elin never took it was like we were born again into a world that we never knew existed. But it’s our world now and it’s Elin’s and we are happy living together in this strange, unexpected way. Because we are together and Elin is still with us and when you have faced loosing your child before you have even known them, and come through it, then you can cope with almost anything.’
Thank you for reading my story. Anyone interested in following Elin’s progress can visit my blog, which I began in the months after her birth www.cerebralpalsyjourney.blogspot.com
“We must let go of the life we had planned so as to live the life that is waiting for us” Joseph Campbell