Sunday, 19 April 2015

It has been a long time... let's have a coffee and a catch up!

Shamefully, the last time I blogged was way back in March. I have so much to write about now that I am not sure where to begin!

The most important person to talk about is my gorgeous girl. The last 8 weeks have changed a lot for E, and I am so grateful to Great Ormond Street as without the team there, we would be still stuck in a vicious circle.

The grommets continued to make a huge difference to her. School have commented on how chatty she is now, and that she seems much happier; we are still seeing the delight on E's face as she experiences sounds that she either hasn't heard before either properly or not at all. The next big thing to happen was her assessment at GOSH. We really didn't know what to expect from her appointment; I was worried about the possibility of unexpected or bad news, or having nothing to come away with at all. We definitely went with more confidence than last time. Simple things like knowing our way around the buildings and knowing the booking in system made a difference.

The assessments were fascinating - a series of hearing tests and speech audiograms gave the consultant the insight we needed into how E's brain is working. He spent a long time afterwards going through the results of the assessments and finally a diagnosis. I find it incredible that E has been in the healthcare system locally since she was first found to have issues with speech and language at her two year check - 5 years ago - and in the short time we have been under the care of GOSH we have had more information, more change, more positivity than ever.

Continuing their amazing care, a week later the consultant's summary letter dropped on our doorstep. Finally, in black and white and under the GOSH banner we have accurate documentation of E's learning difficulties. The relief is immense, yet tarnished with sadness. I would like to share the full summary, purely because I have never met another child like my girl. If there is anyone reading this who has a child with similar difficulties, then I would love to hear from you.

"...a very complex presentation with learning difficulties, significant speech and language disorder, poor short term memory, poor confidence... possible autistic features and some attention deficit... significant auditory difficulties especially with quieter voice levels, background noise and poor quality speech... auditory processing difficulties..."

Quite a list! Our challenge now is to find an environment which allows E to be absorbed into learning. It is a huge ask of any school to have a classroom which is quiet and where the teacher's voice is always of good quality and directed at E so she can understand. We have already been to see a Specialist Support Centre (SSC) for speech and language which is based in a school just 10 minutes away. It beggars belief that we have been in the Speech & Language Therapy system for 5 years and no-one ever thought to tell us this existed, but I am trying very hard to look forward to where we are going rather than dwelling on what should have happened.

We are also exploring Home Education. I have my reservations about withdrawing E from the school system, but I am also quite excited about the prospect of teaching her, and quietly nurturing her so she finds the confidence in herself to start bringing together what she knows to boost her communication skills. I want to say that E's SENCo at her current school is amazing. She has become a huge source of support not just for E, but for me too. The decision to change schools would be so much easier if I didn't have a great relationship with her. Well, I probably annoy the hell out of her, but I really respect her. I can't help wondering if, with the correct equipment as recommended by GOSH if E would thrive in her current school.

We are going back to the SSC next week with E to see how she responds to the staff and the environment. Changing schools would potentially mean also moving daughter number 2, so she will also come along to see what she thinks. A big decision awaits us.

Of course, I am hoping that someone, somewhere out there is interested to know what happened with Brighton Marathon! 26.2 miles around the beautiful city, a gorgeous medal waiting on the finish line....

The last time I posted I had just done the first of my long training runs, 11 miles. It was a good run, and it certainly helped me to feel confident enough to take on the rest of the training. The next long run, 16 miles, wasn't so good. I was so looking forward to running with L again but at 10 miles my knee had enough and was on fire. It didn't help that I had completely forgotten our route and managed to get us lost. I have to admit that it was quite funny trying to navigate our way through the fields (oh yeah, did I mention the lost-ness meant we had to try a bit of trail running...) back into civilisation! At 13 miles my knee came back to life; I'm not sure if it was all of the stretching, repositioning of the IT band strap or plain refusal to stop but I finished it. This was the farthest I had run to date and it was hard, hard work. I had to find real mental strength to not let my knee pain dent my confidence even further.

The planned 20 mile training run filled me with nerves. Despite best efforts, the pain and effort of the 16 miler had knocked my self-belief sideways. The beginning of the run, I stayed quiet and internalised my fears. I was running with my marathon buddies, and having them at my side was reassuring but I was just waiting for it to go wrong. All of our families had arranged to be at various points of the planned route, and seeing Paul with the girls waiting for us as we crossed the bridge over the river was a huge boost. Even before the halfway point, they were cheering us on; they believed in us. They believed in me. As we approached 10 miles, I could feel myself tensing in preparation for the knee pain. My buddies gave me a stern talking to, and funnily enough the knee pain didn't start. I relaxed and began to enjoy the rest of the run. We continued on, with family members whooping and cheering, carrying the supplies we needed to fuel ourselves for the distance. This was our dress rehearsal. The effort and tiredness hit me again at about mile 14, but seeing my friend out for a walk with her daughter who has Cerebal Palsy spurred me on and I dug deep, feeling grateful that I could physically do this. The joy of completing the 20 miles, relatively pain free and not as exhausted as I might have expected, was immense.

My knee didn't agree with me that the 20 miles was a good run. What followed was three attempts at short runs which were all abandoned much before I had planned to. I made the decision not to push it, and that resting the injury at this stage was far more important than running 4 miles. I had already made my mind up that come what may, I was starting the marathon. There was no way now that I was missing out on the experience, the runner's high and my medal. My family and friends rallied, so many of them sending encouraging messages but also by sponsoring me. I held a raffle at the girls' school which was a huge boost to my fundraising, but notification after notification pinged on my phone to tell me another donation had been made to my JustGiving page. All of these people believed that I could do it, and I had to believe they were right.

The countdown had well and truly begun. I was definitely going to be at the start line, but would I make it to the finish?

Sunday, 8 March 2015

Finally, some good news to share.

The last time I posted, I was out of the Half Marathon. That weekend was a huge mixture of emotions. I was grumpy, defiant, sad and proud of my friend's achievements all at once. I arranged to go and spend the day with my brother and his partner to take my mind off it, but instead I found myself clock watching, and working out if the girls would be through safely. I spent too much time refreshing my RunKeeper feed, impatiently waiting for updates. I also felt guilty for not being there to cheer them on and hug them at the end.

As it turned out, it was the right thing to do for more than one reason. While at my brother's house, we received the phone call we had been anticipating for a while. Paul's Grandad's health had been deteriorating over the past few weeks and that Sunday was the time to say goodbye. We went to the nursing home and sat with him for a while. Grandad was a fairly small man, but my word he was strong. His handshake crushed the bones of a giant, and yet he held all four of my babies with such care. Grandad passed away three days later, peacefully with his devoted daughter by his side.

Paul's Grandparents lived full lives. They worked, they travelled, they experienced life together. It was only in their later years did they ever express frustration at not being able to go somewhere far away again. Paul's Grandmother passed away three years ago; she was a formidable yet kind lady and we miss them both terribly.

As we came away from the nursing home, I started thinking about how fragile life really is. I owed it to all of those we had loved and lost to live my own life to the full, to seize opportunities and make the most of what I have. I don't want to look back with regret. I knew that day, with the emotions of missing out on the Half completely rationalised and minimised by what - or who - was really important, that I had to do the marathon. I have the opportunity, I have to at least try.

Later that week, I was tearfully talking with my best friend about everything that had happened or was about to happen. We talked about running; she had obviously given it a great deal of careful thought, and she had a plan to get me around the marathon. We had a conversation that I really wish we had much sooner, but better late than never, and it meant we could go forward to the marathon as a team along with her running buddy. The diaries were out, and with a hot coffee and a good helping of cake, the training runs were planned.

I just needed to get back out there and run.

I looked at the plans for the following eight weeks with wide eyes. There was a lot to think about (which means worrying for me!) and I now had to get my head back around training for a marathon in a short space of time, as well as E having grommets put in under GA and her big assessment at Great Ormond Street.

The first couple of runs didn't fill me with confidence. My knee hurt. A lot. It isn't just an ache that goes away with paracetamol, but a hot, sharp, knife through your leg kind of pain. It is really, really hard to ignore or to be mentally stronger than. Hobbling home after a 4 mile effort at some kind of movement that wasn't walking, I cried on Paul's shoulder at what I could only see as a failure. The next run was a team effort with the marathon girls, and a new ITB strap. I suprised myself at running for over an hour, only stopping to stretch my knee out which was more relief than just walking.

With my parents here to help with childcare, I could get out again but with Paul by my side on his bicycle. Another 7 miler, and while my knee was reasonable I felt like I was dragging my backside behind me. The effort was incredible; I was tired and my pace was snail-like. I hated every minute.

The following day, we sat beside E in hospital. The pride surged through me as she took it all in her stride, telling me that she was going to be brave. The operation to insert grommets was successful, and she woke up from the anaesthetic really well. I was worried about her waking up the most of all, especially as we have such trouble in the mornings. Back on the ward, I looked at my little girl sleeping in a hospital bed, with her tiny hand bandaged to protect the cannula. Again life seemed so precious, and so fragile. I can't imagine being without any of my girls, and handing E's very existence over to the Theatre team was probably one of the hardest things I have ever had to do. I was overwhelmed with good wishes from family and friends, so many people care for her. As we came home from hospital, we began to realise how this procedure was going to open up the world to her. Startled by a noise, she asked what it was. I told her that was her tummy rumbling and she giggled. Something so simple, so familiar and yet this seemed to be the first time she'd heard it. The next day was like watching E take her first steps again as she experienced new sounds; cucumber and crisps crunching, her name being whispered, the squeak of the trolley wheels... So many ordinary things, yet new and extraordinary too.

The first weekend long run was approached with nerves. Recent events spurred me on, and reminded me of how committed I am to not only being at the start line of the marathon. but also crossing the finish line. I ran the first 6 miles with the marathon girls, and was met by my knight and his trusty steed (Paul on his bike!) to accompany me the rest of the way home. Incredibly I completed my 11 miles without stopping to stretch my knee out. My pace is nowhere near as quick as I was pre-injury but I honestly don't care. My knee injury, Grandad and E have given me a totally new perspective on running. In a way, I wish I had this perspective all the way along, but in the last year I have learnt a huge amount about myself, and I don't think I would change it.

Finishing 11 miles is only a proportion of what I need to achieve in 5 weeks time. I already feel like I have come such a long way and while the rest of the training is daunting, I feel ready to tackle it. I can't wait to get back on the road with my running buddy despite worries that my new snail pace will hold her back.

Three weeks ago I was ready to defer my marathon place and to have a good think about not running at all. Without that tearful conversation with my lovely best friend, I wouldn't be writing this now. She has a lot to answer for!!! And what about now? Well, now is about living, about being really full of determination and ready to embrace whatever comes next.

Thursday, 19 February 2015

Bravo Hotel Mike 1,3. Over and out.

The title decoded, Brighton Half Marathon 13 miles - it is over for me before it has even started.

I am now in my 6th week of this stupid knee injury and it will not budge. I have been backwards and forwards to the physio, spending a small fortune to try and fix the problem, as well as the rigorous strengthening and stretching routine which I have religiously completed at least three times a day. I've been back to the osteopath who manipulated my sacroiliac joint into position and stuck his elbow into a tight piriformis muscle but nothing has solved the problem.

The pain has changed from a niggly sharpness only when I'm running to a constant dull ache, with the sharpness stabbing into the outside of my knee on each step I take. Coming downstairs is becoming more and more problematic, and requires a great deal of concentration. Or just bumping down on my bottom (remember the days when that was great fun?!).

Both the physio and osteopath noticed that my patella was tracking, and I was so disappointed when I was told that I had poor muscle tone in my thigh; unbelievable to my eyes which has seen the change in my leg from a withered old twig at its worst with the SPD to having clear muscle definition and strength!

The past two weeks have been a roller coaster of indecision, moodiness and frustration. The physio was initially hopeful that the treatment was going to work in time for me to be on the start line this Sunday. I saw him yesterday and he could see a marked improvement from the exercises I've been doing. My knee is painless on passive movement. So, he strapped my knee and IT band up and today I was allowed a light run. I knew before I'd even got to the bottom of my road that my knee wasn't going to carry me for 13.1 miles. I wanted to give it a chance to warm up and get moving again, so with tears flowing I kept going for a couple of miles, my heart sinking further with each painful step. I kept hoping that it was just the dreaded 'I can't do this' monster squeaking at me, and trying to decide if I could cope with the pain for a couple of hours but I knew deep down that I had to stop. I rang the physio and told him the run wasn't pain free, and he confirmed my fears. Do not run on Sunday. He wasn't the first person who knows sport to tell me not to run, and I know I have to listen.

I'm not sure I can even put into words how I feel. Selfishly, I want to hide away under a duvet for the next few days so that I don't hear what a great day everyone had in Brighton, how proud they are of themselves etc etc. It magnifies my feelings of failure, of defeat, the demons jumping up and down laughing at me saying I Told You So!! I can't be childish though, and I will be proud of all of my friends running on Sunday. Proud but jealous.

The reality is also dawning that I have to defer my marathon place, too. I've always maintained that I will be sensible in my approach to the marathon and not underestimate its enormity. It is a mere 7 weeks away and it is very, very unlikely that I will be fit enough or up to the required mileage in that short time, especially considering I am not even able to run 2 piddly little miles to date.

I am discovering that I have a reckless side, as well as a competitive side. The decision is made that I can not and will not run on Sunday. It is senseless to run on an injury, even without four children to look after it would be a huge risk to try. Yet there is a part of me which would quite like to sneak out of the house early on Sunday morning and run it anyway...

The next few weeks are going to be trying. E is having grommets fitted in the first week of March, which brings a whole set of worries new to me. None of the girls have ever had a general anaesthetic, and handing my little girl's entire existence to a doctor is going to be hard. I don't have a huge amount of trust in our local hospital; they have made far too many mistakes with her care already and I am terrified that they are going to stuff up again this time. Once the grommets are in and E no longer has glue ear, she should be able to hear much better. She already struggles with loud noises, and the grommets will make everything louder, so I am expecting a very sensitive little girl for a few days.

All being well with the grommets, the rescheduled APD assessment at Great Ormond Street is booked for early April. Two days before Brighton Marathon to be exact. It is a lot to get my head around. Bearing in mind I over-think and worry about, well everything possible if I'm honest, shove in a knee injury on top of that and it is just recipe for disaster.

Despite all of this, I have been encouraged and comforted by so many people. Amazingly the fundraising is going well, and I have almost reached £600 which is phenomenal. I have no intention of giving up on the 1000 mile challenge. I WILL complete 1000 Miles. I'm not sure if that will be as I cross the finish line of Great South Run, by the end of 2015 or even further down the line. But I will do it. I'm not lucky enough to have a body that will just run with no repercussions, so while I am off my feet I will be working hard at strengthening the weak bits, stretching out the tight bits and obsessing about not running. I will miss the freedom of running, the time to clear my mind of the stresses and strains of the day. I will come back to it, stronger than this time and having gained a lot of experience along the way.

Saturday, 7 February 2015

15 days until Brighton Half Marathon.

Two weeks tomorrow... that's it. 14 days and a few hours until I am due to stand on the start line on the first of the big ones.

I've been asked several times recently how my training is going. The simple answer is: it's not. It's going nowhere, as am I. Great South Run was only a few months ago and I was in a similar position then, a great big grey cloud of misery hanging around, raining question marks down on my ability to not just finish the race, but to start it too. My toddler-esque self would quite like to have a bit of a tantrum and shout "It's. Not. Fair" while stamping my foot, crossing my arms and pouting my bottom lip so low I would risk tripping over it.

The IT band problem isn't going away as quickly or as easily as I would like it to. The physio for my knee isn't as easy to do as my ankle was. The stretches are harder and I still need to combine heat and ice on my knee; it is much easier to dunk an ankle in a bucket of cold water! The pain afterwards is horrible. Nothing seems to make it better, and the stairs have become Mt. Everest. However, I have seen improvement in the amount of time I can run for, going from 20 minutes (just) 2 weeks ago to an hour today.

The biggest difference this time is how I am coping with having an injury at this stage of training. I feel defeated before I've been overcome, I feel like giving in, and yet at the same time I want to keep going and not be beaten by a stupid injury. Such a conflict of emotions, which is exhausting in itself. The last few weeks have been challenging; E's hospital appt with the ENT consultant wasn't a pleasant one, Husband has been off work all week with bursitis of his hip and has been limited by pain and a hobble, thrown in on top of tired children who have been working hard at school and are more than ready for half term holidays. I've lost my coping mechanism and as much as I've wanted to go out and run away the stresses I haven't been able to.

There have been many tears. Tears of anger, frustration and resentment. I'm seeing many people celebrating their running successes (and rightly so) and while I am proud of them, I feel the ugly green-eyed monster raising in me. Instead of being inspired to go on, I want to crawl into my bed and hide away from the world. Where I see their courage and achievements, I also see my fear and failure. The latter two are much, much bigger.

While I was running today, I started with hope. I'm on my third pair of running shoes in less than a year, and it would seem that these ones don't irritate the old-lady bunions. This is good; it addresses the source of the IT band inflaming. It was freezing cold but I didn't feel the iciness. I felt the freedom of being out in the bright sunshine, despite the frost on the ground. When the pain struck just before 3 miles I had already decided I would cope with it. The Body Vs Mind battle was on; I could be stronger than the pain. It soon took over though, and I began to believe I was going to have to abandon the run and phone home to be rescued. The positive, warm feeling of hope dissipated, fractured by the searing pain up into my hip. I thought of E, how she felt when the most normal of noises made her cower, and cry in pain. How she felt when the carnival approached and all she felt was fear. How she felt when she wanted to tell me something but didn't have the words to say it. I put my head down, gritted my teeth and carried on.

Who knows if the pain settled because psychologically I was managing it, or if the slower pace made it manageable, but I carried on. I smiled at passers by with a false confidence. Maybe if I could convince them that I was invincible, then maybe I could convince myself too. I passed by several opportunities to turn home; the feeling of being free and out was worth the discomfort in my leg.

As I jogged up the hill to home, I could see the silhouettes of two familiar figures at the end of my drive. A proud but concerned husband holding up a jiggling two year old calling me on. Their faces becoming clearer as I grew closer, filling my heart with love and pride. I had made it.

As the day progressed, my knee objected louder and louder to the morning run. My head wants to go for 10 miles tomorrow, my knee is belly-chuckling at such a ridiculous plan. The question mark over the half marathon looms larger and darker as the pain intensifies and now I need to decide. Head down, teeth gritted and deal with it, take the risk that 13.2 miles in two weeks could seriously negate my chances of being a part of the marathon, or stand back and watch the successes of others?

I need a crystal ball.

"The only disability in life is a bad attitude"

I came across a picture of a child with Down's Syndrome on Facebook the other day. The child is laughing, looking very happy, and across the top of the picture in a swirly font it says "The only disability in life is a bad attitude". I looked at it and initially thought 'Ah, how sweet', but after giving it some thought it didn't sit well with me. I couldn't at that point however, put my finger on why.

Over 1.2 million people had liked the image, with another 600,000+ people sharing it. Looking through the 12,500 comments I found that I wasn't the only one who hadn't taken well to the image, and reading some of those made me begin to understand my own feelings. I took to my Facebook page 1000 Mile Running Challenge, and wrote:

"I've read a really interesting Facebook thread on using people with SEND as inspiration. Many of them expressed disdain at social media posts using images of 'disability' as a way of promoting acceptance and equality. The part of the post of the young woman who responded to one of the images which really got me thinking was:

"These pictures, which have become known as "inspiration porn" to us, are irritating and untrue. We use the term "porn" because it objectifies us. It objectifies us in that you, the "normal" people, are using us, the "disabled" people, as a source of inspiration so that you can not feel so bad about what life's circumstances have thrown at you."

It got me thinking about E; she inspires me to keep going and when the going gets tough when I'm on a run I think about how tough her days are and then I think I've got nothing to moan about. My thoughts turned to acceptance and equality - she is accepted by her peers at school and has good friendships. Equality is harder to measure. She is as important as the rest of the students in school, and her teachers work hard to ensure she has an equal opportunity to access the curriculum and to reach her potential. All of the things that we, as her parents, and her school have the ability to change or influence are done in order to make her as happy and fulfilled as possible.

What we can't do though, is change her disability. It can't be taken away, fixed or healed. No amount of acceptance or equality will change her disability. It might make her world a nicer place to live in, but I think that the issue of acceptance and equality affects further and wider than just people with SEND.

I wonder if Eloise will grow into a person who wants to be accepted and equal, or if she would simply want to be able to talk without having to think so hard that it makes her head hurt.

Food for thought."

I then came across a blog written a while ago, addressing the same issue. The image challenged was a child with Down Syndrome, wearing bilateral leg prosthesis and running alongside Blade Runner Oscar Pistorius. The blog stated that 'Bad attitudes do not cause disability any more than good attitudes guarantee health', and while I agreed with many aspects of the writer's opinion it still didn't quite explain how I felt. I don't think that the creators of these images are trying to dismiss disability as a matter of attitude, but I still don't quite get their point either. The image of Oscar Pistorius surely challenges this in a new way; here is a man once hailed as a role model and used to promote ability and where is he now? In jail for shooting his girlfriend.

The best I have heard disability described is by a friend of mine who has a daughter with cerebal palsy who uses a wheelchair. Rather than describing her daughter as 'disabled', she told me how the wheelchair enabled her daughter's mobility in the same way as someone would wear glasses to enable them to see properly, or how someone with diabetes has insulin to enable them to properly metabolise carbohydrates and fats. Perhaps E's learning disabilities aren't the problem; the problem lies with us not yet knowing how to fully enable her...

When I started this blog and the running challenge, one of my aims was to try and get people talking about invisible disabilities. When I was training to be a nurse, I had a placement in the community to learn about caring for people in their own homes. We regularly saw a young gentleman who had a spinal cord injury and therefore he used a wheelchair. You could be forgiven for thinking that his biggest problem was that his legs didn't work but for him the worst part of his disability was invisible. Not being able to walk was one thing, but his bowel didn't work properly either. The health care professionals providing his care had to enable him to have his bowels open regularly. Even those with the most visible injuries and disabilities have invisible problems too; it isn't just confined to learning difficulties.

Maybe I can challenge bad attitudes and try to open the eyes of the ignorant. I will never be able to remove E's disabilities, but I will carry on pushing the doctors to help me enable her to learn, to understand and to communicate well. 

Tuesday, 20 January 2015

Gah! Injuries! Gah! Hospitals!

After a couple of weeks hard graft, I suppose an injury was high on the risk list, but I didn't think it was inevitable. My training plan is challenging but do-able, and following on from the runs I had done in December which were trouble free I wasn't expecting anything bad to happen.

The newest injury took me by surprise.- I was out on a planned long Sunday run, running with a friend who I hadn't been out with before. The route was local, familiar roads and I stuck to my intended slower pace and the 7 mile route I had mapped. It was a lovely run; cold but bright and a great opportunity to chat with my friend, a conversation which I really enjoyed and which melted the miles away.

We were on the home straight when a twinge in my right knee caught my attention. It wasn't there for the next few strides, so I ignored it. I carried on ignoring it until with every forward movement of my leg, the stabbing pain in my knee demanded attention. I mentioned it to my friend, but we were so close to completing the 7 miles and I didn't want to give up. I watched the countdown to 7 miles on my Garmin, and as soon as it turned I pressed stop. Knowing I had to be sensible and protect myself from any real damage I finished by walking home.

I felt a real mixture of emotions. Slightly embarrassed, very disappointed and a bit scared. It felt like another ailment to add to the increasingly lengthy list entitled 'Fail'. As the ankle injury was just a few months ago, the treatment was fresh in my mind. I got straight on with stretching out the affected knee and then spent the afternoon with it elevated, alternating heat and ice.

As soon as possible on Monday, I was on the phone booking an appointment with the sports physio. I normally avoid Dr. Google as much as possible, but the symptoms all pointed in the same direction - IT Band / iliotibial band problems. My knee has been an issue before, having had some kind of injury when I was playing hockey a lot at school, and taking part in many AAA competitions. When I first started running, my knees were sore and achy but I had the determination to get through it.

The physio confirmed my fears, IT band inflammation where it inserts into the knee. She treated it and taped it up and told me what every runner does not want to hear - don't run. I protested my case. Not running is not an option, I need to run, I need to complete my half marathon. The answer was swift; no, what you need is for your knee to be fully functioning.

I followed instructions. No running. The week passed quickly with my parents staying to help with childcare for E's hospital appointments, and the much anticipated hearing test prior to going to GOSH for the big assessment. Not being able to run means that I lose my stress buster, and I really could have done with running off my frustrations. E's audiology appointment confirmed what I knew already; the glue ear that her consultant at GOSH found in September hasn't cleared. I wasn't surprised as her hearing hasn't improved at all since then. A flurry of phonecalls to GOSH who were communicating with her consultant who was on the other side of the world, and also to the local hospital to try and book in with the consultant who was supposed to be in clinic on the morning of her audiology appointment but wasn't, established that the big assessment could not go ahead. I had a strange sense of disappointed acceptance. I felt let down by our hospital for the continuous need to chase, ask, push and anger at their 'mismanagement of E's hearing loss' (as described by GOSH), and the impending battle ahead of me. Over the last five years I have tormented myself with 'Why', and I can't imagine how I am going to feel if the simple answer turns out to be 'Because she couldn't hear'.

So, the days continue in much the same manner. A desperate hunt for running shoes which don't exacerbate the problems I am accruing (stereotypical old lady's feet... bunions... yuk...), and a mental battle with wanting to get out and run off the collision of negative thoughts in my head with the physical need to rest and repair. The most important thing, however; doing a good job of advocating E at her appointment this week where I meet her ENT consultant for the first time whilst politely holding him accountable for the failures of his team to make sure that E's hearing is healthy and functioning. Oh joy.

Thursday, 8 January 2015

A big week; a newspaper feature and upping the miles

Sunday's long run was looking daunting having missed a couple of runs due to the lingering cough I've had. I could've easily backed out of it, but instead I pinged a message off to my buddy to see if she was heading out. I was relieved to find that she was feeling the same as me and our route was soon planned.

We headed off in the freezing cold, but bright morning sunshine. I don't think I have ever been outside in temperatures as low as 4 degrees in so little clothing... I had in my mind that I really wanted to get to my planned 7 miles done but considering the recent illness I wouldn't give myself a hard time if I only made 6. It was good to be running with L again, the running seemed to flow as well as the conversation, which in turn helped the miles pass by. That doesn't mean that I didn't hit the figurative wall. Several times. But one of the best things about running with a buddy is that the wall is easier to conquer. Our route was adapted as we went along, and we must've felt confident in ourselves as the alteration extended the distance to at least 9 miles. The last couple of miles were harder than hard, and at one point after stopping to cross a road, I really didn't think they were going to start again, but they did. Not only did we complete the 9 miles, we were close to 10. So we did what all crazy, number obsessed runners do... we went around the block and passed the first house I ever owned to finish the mile and by the time we were back at L's house we had clocked up a wonderful, leg breaking 10.36 miles.

It took me a couple of hours to defrost at home. I was so thankful for the support of my husband as he not only gave me the time to be out and running, but then the time to sit under blankets waiting for my hands to return to pink from the fetching bluey / purple they had turned. (Note to self: wear gloves.) The warm-up time gave me time to look over the mileage I had achieved so far, and with help from the eldest daughters and their calculators, we worked out that I had completed 199.09 miles to date. So, so close to 200. There was only one thing to do. With the eldest girls shrieking in excitement and delight, the running shoes were pulled on once more then the three of us headed out to finish the last mile and together we took it to 200 miles done.

Monday was soon here which meant the Christmas holidays were well and truly over, with husband back at work and the girls preparing to go back to school the next day. Not the ideal time to have a mini-interview with a reporter from the local newspaper, but a true reflection of the chaos we exist in! It was easy to talk about E and the running challenge, it isn't until I start talking out loud about it that I realise how passionate I am about what I am doing.

With the girls back at school on Tuesday I had time to reflect on the holidays. When E is out of school, we see a very different little girl. The tiredness of working hard to hear, understand and achieve at school gradually dissipates to reveal a funny, cheeky and very loving side to her. The tantrums and outbursts are less, the happy play times are more. We all relax, and in turn so does she. I love those times. Preparing myself for the school week is how I would imagine a knight constructing his armour to protect himself from all that is fired at him. Layer upon layer of emotional defences to safeguard myself and those closest to me from the battles we face every day in the pursuit of whatever we perceive at that time to be best for E.

The chaos that usually surrounds us as a working family continued after school. E returns to a tired, anxious state much faster than she recovers from it, but the difference we are beginning to see is how she copes with it much better now than she did even six months ago. With a piano lesson in one room, and a stranger with a huge camera (and even bigger lens!) in the dining room, I could've potentially created a situation which caused a huge meltdown for E. No, she took it in her stride, and even posed for the photo to accompany the article for the local paper. I could have melted with a mixture of relief and pride.

The next mountain to conquer was my own battle, rather than E's. I reminded myself of the ethos of the challenge, this was never supposed to be easy, if it was it wouldn't reflect the struggles E faces every day. After running 11 miles on Sunday, a day at home with all 4 girls on Monday and then the mayhem after school, I still needed to stick to plan and run 5 miles. It was so hard to get out of the door, so I enlisted my fast-paced friend to run with me. Again it was easier than being alone, but I could feel the 10 miles in my legs like lead weights. I did it though, and the legs felt lighter and less tight by then end of the run which surprised me. I did learn that I need to seriously increase my calories and fluids in the day to continue running at this level. My next piece of homework awaits.

The challenge continued into Wednesday when my training plan was telling me I need to go out and run 7 miles. Route planned, husband home a little earlier than usual and I headed out once again into the freezing cold. No sunshine to cheer me up this time, no running buddy to keep me going. Just me, the pavement, and some music to distract me. The heaviness in my legs was back and a heaviness in my mind made the run drag. It was cold, windy and hard work. Thinking of E kept me going, telling myself that the hard runs would prepare me for the marathon carried my feet forward one step after the other. What it didn't do was stop me running my planned route in reverse order, missing out a mile. This time though, the crazy runner obsessed with numbers was happy to have completed a third run in four days. This was enough for me. For now.

The newspaper article was published today. I'm guessing many people would see that and think that I would be happiest about the publicity for the challenge, the potential for fundraising, the profile of invisible disabilities being raised. Of course, I am grateful for all of that. The Worthing Herald have given me more than that, and I now have a photograph of me with E where she looks calm, happy and relaxed. And only I know what was happening in the background, and how her smile represents far more than a pretty little girl smiling for the camera.