Living with Cerebral Palsy 🍋🍋

Friday, 26 May 2017

Look for the helpers....

On Monday Huffington Post UK  published a recently edited blog post from my archive originally entitled 'The Kindness of Strangers' It was a post about how wonderfully the majority of people treat Elin. People that don't know us at all,  and how despite some negative reactions to Elin along the way, most folk never cease to amaze us with their empathy towards her and us as a family.
This was, of course, before the atrocities in Manchester on Monday night. In a venue we have ourselves watched concerts in countless times, in a city we know inside out we could hardly believe what we were seeing. As the full extent of the horror unfolded around me on Tuesday morning, I  was struck mostly by the stories of those who helped. Those people who risked their lives to protect others and the stories of complete strangers showing an incredible amount of compassion towards those they had never met. I was finally broken, whilst watching the coverage, by a story of people forming human chains towards the exits in order to help those in wheelchairs escape. This before they would have been fully aware of what had happened or what danger they still may be in themselves. That could have been us, that could have been Elin stranded amongst the terror.  How would you ever repay that sort of kindness, that pure human solidarity during such life-changing moments?
On Monday I could never have guessed how relevant the message I was hoping to impart with that particular blog post would be, as events unfolded in Manchester that night. As unthinkable tales of horror reached the media, so too did stories of amazing love, selflessness, strength and support between strangers. A homeless man sleeping outside the Arena walked towards the blast, knowing that he needed to help without fear for his own life and ended up clearing debris and caring for the injured. NHS workers, Fire Officers and Police from all over the North turned up to report for duty- so many that some had to be sent home.There were queues of people waiting to donate blood, people who had travelled from all over the UK. Other's turned up with food for the emergency services workers, or walked the streets handing out bottled water. Manchester families took in the lost, taxi drivers offered free rides to anyone who needed them. Children in school's across the country signed cards and flags to send to the families of the victims. Crowd funding pages were set up and amassed thousands of pounds in a matter of hours. It seems that in times when we see the very worst of humanity, we also see the best.
We read so much in the newspapers about how 'desensitised' we are all becoming to basic human values, particularly the younger generations. How we are a 'look down' population, staring blankly at our phones, no longer talking to one another, not fully engaging with each other's lives and problems. Yet in the wake of this tragedy, all I could see was love and unity. An act designed to cause fear and hatred inspired strength and love. The human spirit is a formidable force and we have to draw such hope from what we know about those strangers thrown together so unexpectedly on Monday night.
Something I saw quoted again and again on Tuesday was a story told by Fred Rogers, the popularity of which indicated to me our very human need to rise up from devastation. To find good where there is evil, to see positives where it seems there are none. It was a story he told about when he was a boy and used to be upset by things on the news:
"My Mother would say to me, 'Look for the helpers. You will always find people who are helping'. To this day, in disaster, I remember my mother's words, and I am always comforted by realising that there are still so many helpers-so many caring people in this world."
This is the message we must carry forward with us in the wake of this awful attack. As we as a family have come to know, there really is so much love and kindness in the world, sometimes you just need to open your eyes a little wider to see it. Always look for the helpers.
Have a happy and peaceful weekend, folks


Sunday, 14 May 2017

Why post-natal/post diagnosis mental health support for special needs Mums AND Dads is so important.....

As we exit Mental Health Awareness week I have noticed a plethora of informative, enlightening, brutally honest and sometimes extremely moving, articles highlighting the subject across social media. Perhaps one that piqued my interest the most was an article  regarding post-partum mental health, in particular focusing on parents who did not have the expected birth experience, and for whom things did not ‘turn out ok’ in the end. The article (which can be found here inquired ‘Who looks after such parents?’ The answer, in my own personal experience, is nobody.
I don’t think anybody would disagree that support for parents following trauma should be offered as soon as possible. However, due to an extremely underfunded and overworked NHS, this support is rarely forthcoming. My daughter Elin was born ‘flat’ in 2008 following an epic and exhausting labour. All hell let loose as soon as she arrived- my husband was told to pull the emergency red cord above my bed and we waited anxiously amongst the chaos for a cry that never came. We saw only a flash of marble-white flesh as she was bundled onto the resuscitation table next to my bed and ‘worked on’ to no avail, before finally being whipped away and attached to life support, whilst we waited in an empty room not knowing anything for what felt like a lifetime. Her Apgar score was 0 and she was put on a ventilator in SCBU where she stayed as we watched and waited for 11 days until she was finally able to breathe unassisted.
The Midwives who had attended the birth were offered counselling sessions within a week. We were never offered counselling, though we did have the where withal to request it ourselves. I was told that due to high waiting lists we could have an appointment through MIND for December (it was July). So instead we navigated through the following months of horror completely by ourselves: a month on SCBU; then home to a simply crazy number of appointments; massive professional input; weeks spent in and out of hospital; zero sleep; administering several medications a day; tube feeding; watching Elin have seizures daily; open surgery at Alder Hey and finally receiving a devastating diagnosis of severe Cerebral Palsy due to lack of Oxygen she had suffered at birth.
During those dark months we simply survived from day to day. We tried to support one another as our own hearts broke inside us without a second thought for counselling. In many ways it was easier for me, people asked how I was. I was the Mum, I was the one who had given birth and most people understood how awful it had been. But the effects on my husband were equally far-reaching and Dads often seem to be forgotten in post-partum trauma discussions. My husband suffered horrendous PTSD and flashbacks after watching me give birth and observing the ensuing nightmare unfold. It was he who was forced to leave Elin and I in the hospital alone as he informed family and friends of what had happened. It was he who drove home to an empty house and put away the Moses Basket, convinced we would not be needing it (he later told me he drove back to hospital after doing this but never made it- he turned round, drove back home and put the basket back out. He wasn’t ready to give up on our girl). It was him who was warned in grave voices by the doctors that our baby may not make it as I was bathed and medicated in my room, oblivious to these discussions. The first time he saw our daughter through the glass of her incubator, surrounded by machinery dwarfing her tiny frame, he was alone. To say he was traumitised would probably be an understatement. So we both struggled through our emotions after bringing Elin home.
I remember one particular time when I just couldn’t get up from the bathroom floor where I had crumpled. I simply thought I was going to die of grief. Yes, perhaps we could have sought private counselling but it quite literally never occurred to us. Once we brought our baby home from the SCBU there was too much to think about and our own mental health was the last thing on our overflowing to-do list as we cared for a very sick baby.  We needed someone to talk to, to suggest we get help and explain the far-reaching effects of trying to deal with what we later came to understand as PTSD without professional support.
I regularly wonder if we had started counselling in that first six months after Elin was born, would we have had the emotional tools that might have made the following years of devastation perhaps that little bit easier to handle?
Any parent who has received a life-altering diagnosis for their baby in the days or weeks following the birth needs help, it really is as simple as that. An SEN parent friend of mine succinctly explains it ‘It’s like they say this is what your baby has. This is your life now, so deal with it’.

Post- partum/post diagnosis mental health support is SO IMPORTANT!! The healthcare professionals such as the Midwives should absolutely be offered counselling after trauma, but so should the parents. It’s time to find the funding. It’s time to redress the balance.


Sunday, 7 May 2017

The Alien in the room..

So a fortnight ago I pulled my back lifting Elin. It was very painful at first and then it became super annoying, since I couldn’t easily move around and obviously this had an impact on what I could do with Elin day to day. Thanks to an enthusiastic Osteopath who seemed like he was trying to murder me at first by basically jumping on my semi naked torso, making my back sound like a bag of popping candy, it’s actually a lot better than it was. However I’ve had to finally admit what people have been trying to tell me for ages. I need to start using Elin’s hoist.
 I have a total and completely irrational hatred of the hoist . A hatred which far exceeds any feelings about other specialist inanimate objects that are necessary in our lives now that Elin is almost nine. Until now it’s just been dangling in the corner of Elin's room like an evil science fiction- esque spider which I avoid eye contact with. In the past I have felt like Sigourney Weaver in Alien on catching sight of it, I’d break out into a sweat, try and duck from view and if I’d owned a gun I’m pretty sure my reflexes would have involuntarily whipped it out and blasted it's stupid, ugly horrible head off.  It was because looking at it was like staring down the barrel of our future with Elin, a future I wasn’t ready to accept. It was too clinical, too impersonal a way of moving her. I wanted to be able to carry her forever.
Part of my issue with the evil hoist is that it reminded me so much of hospital wards and old folks homes, like the one Elin's Grandad lived in during his final few years with us. This was not something I wanted to associate with my baby. No way, I didn't want the hoist for her. (Seriously irrational given she has been using a wheelchair and other mobility equipment such as her standing frame for the whole of her little life).I would never have chosen to use it.  But choice is something I have learned to relinquish to a degree in our funny topsy turvey world. It doesn't matter whether I want to use it or not,  I have to. Elin needs it, I need it. I’m no good to Elin with a damaged back after all. It's time to stop procrastinating and start using. The hoist must become part of our lives. I have to concede at this point that at least we HAVE a hoist, many families may not. I should be, and actually am, grateful that we have the option. Also, as sure as I am of my hatred of the hoist I am equally sure that like everything else acceptance will reluctantly follow regular usage. I know that soon, I will wonder what we did without it or why I was so scared of using it in the first place. One day I may even be singing the praises of the hoist. I am told Elin loves it in school and have seen her laughing in it with my own eyes, so there’s a strong possibility that hoisting can actually be something fun we do together. Like a sort of indoor swing maybe ☺ The evil spider may become a beloved pet. I just need to be a bit more Lieutenant Ripley about it, toughen up and crack on.
After all, that's what Elin's doing.
Like so much else in my life I think I need to take my inspiration from her on this one.
Have a great week, folks!
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