What I Have Learned From Counselling - And Why I Believe Everyone Should Have Access To It

I started having counselling sessions earlier this year, after suffering a breakdown. I’d tried counselling in the past and gave up after six sessions. I just thought it wasn’t for me. I’m a pretty open book anyway and thought talking to friends and family was enough. It turned out it wasn’t. 

It all came to a head when I read a story, similar to to my son’s death. Reading it brought back terrible memories, that I’d buried deep inside my brain. Memories that were too painful to process.

I reached out to a charity who generously funded counselling sessions for me. By that point I would have tried anything. It was one of the lowest points of my life. A friend recommended a local counsellor and as soon as I met her, I felt a deep connection. I can’t stress enough how important it is to find the right counsellor. To pour your heart out to a stranger, you need someone who you can trust, has empathy and you bond with. 

It’s taken months of sessions but through talking about Charlie, I’ve also found an acceptance of me and who I am. My counsellor has given me techniques to deal with my grief and led me to the path of mindfulness. I’ve learnt to avoid knee jerk reactions to situations by stopping to think first. It’s been tough to re-learn my natural reactions but it has helped my mental health tremendously. 

Now I look at myself and the impact my words have on other people. It’s very easy to get tone wrong on social media. I look at the long term consequences of what I say and how I say it and ask myself, is it worth it making that comment or that status?

We’ve just passed the eighth anniversary of my son’s death and this is the first year I have felt in control of my emotions. Grief doesn’t have an expiry date and I was putting pressure on myself to “get over it” as I felt other people expected me to. Through counselling I have realised I can accept anniversaries are going to be tough but I have the tools to get through them. I can make them into something positive. Time spent with friends or just alone with my family. The choice is ours and I don’t have to justify my grief to anyone. 

I have more confidence in myself as a person. I have tightened my circle and kept the people who love me close. Those are the people who matter to me. I can be the real me with them. Silly, daft, show off, attention seeking me! Because that’s who I am and at 39-years-old I have no intention of changing.

I am now embracing who I am. If I want to sing, I will sing! It makes me feel good. My ambition was to write a children’s book and I have just completed my first one. Success isn’t important to me but fulfilling my dreams is. Writing is my outlet and is good for me. 

I’ve always felt the need to please other people, to the detriment of my own mental health. Now I concentrate on those closest to me and can be a better support for them. 

Letting go of negativity was a big change for me. In the past few years I became very angry with the world. I wanted to change things and my opinions always came first. Now I sit back and read more. I listen more. I can make changes to the world without making someone else feel bad about their choices. 

Dealing with my grief has been the main theme throughout my sessions and I’m still a work in progress. I think mental health should be treated like any other illness and be kept in check with regular counselling sessions. Even though I have strategies to help me cope, I still feel the need to have regular sessions, to keep me mentally stable. 

We all come across bumps in the road and nobody has an easy life. Just an hour with my counsellor keeps me on track and focuses me. The reassurance that I’m heading in the right direction and how to overcome different challenges I face. I find it incredibly frustrating that so many people don’t have access to this sort of care. I strongly believe it should be available quickly and easily to anyone who needs it. I wouldn’t have got through the past few months without it and full credit goes to my brilliant counsellor and what she has taught me.

This blog post was first published at Huffington Post UK

Song For Charlie

Today is the eighth anniversary of Charlie's death and the conclusion of my fundraising challenge. Our family, friends, Meningitis Now staff and even my teacher from school, have made videos for our Grand Finale! We are calling this our Song for Charlie. You can read Charlie's story at http://charliecheekychops.blogspot.com/.

Please watch the video to the end as it has important details about our fundraiser in the closing sequence. We wanted to make a video which will make you laugh and perhaps cry but most importantly raise awareness and funds for Meningitis Now.

The symptoms of meningitis in a baby or child under 5 are...

* Fever, cold hands and feet
* Refusing food/milk and vomiting
* Fretful, dislike of being handled
* Drowsy, floppy, unresponsive
* Rapid breathing or grunting
* Unusual cry/moaning
* Tense, bulging fontanelle (soft spot)
* Stiff neck, dislike of bright lights
* Convulsions/seizures
* Pale blotchy skin
* Spots/rash - NOT EVERYONE GETS A RASH

You can find more details at www.meningitisnow.org.uk and donate to Charlie's fund at https://charlie-benjamin-mann.muchloved.com/. We have raised over £1,200 with this challenge and are now nearly at £39,000 overall. We would love to get closer to our target of £40,000.

Finally, a huge thank you all the people who took the time to take part in this video. There are over 50 people in it and we are grateful to every single one of you.

Enjoy...

How I Took Charge Of My Mental Health By Fundraising In Memory Of My Son

Eight years ago this month, I lost my three month old som Charlie to Meningitis. October has always been a tough time for me mentally as I suffer from Seasonal Affective Disorder (SAD) but now I find it even harder to get through the days, as I battle with my grief. For me, Autumn conjures up memoties of depth and despair. No more sitting outside in the sunshine. evenings with the children having water fight are long gone. The cold and grey days accompanied by dark evenings, all add to the depression I already suffer with. 

This year I decided to make a change. To take a positive step and take charge of my mental health. I wanted a challenge. Something that was fun and would keep my mind off what was to come in the next month. I also made the decision to combine it with some fundraising in my son’s name for Meningitis Now who gave us great support after his death.

I asked around and got some great ideas. One friend suggested a challenge called “Walk A Day In My Shoes” where I would wear a pair of borrowed shoes and take a picture, which I would then upload to my social media accounts. I’ve had everything from golf shoes to flippers! I'm disabled and in a wheelchair due to severe epilepsy, so the idea being, that as I can’t walk myself, I would be somebody else for the day.

Another friend suggested I sing a song a day. I’m well known by my friends for my lack of singing ability, so of course the requests for raps, rock songs and any tune I could murder came flooding in! I decided to link the shoe to the song, so for example I wore snow boots and rapped Ice Ice Baby! It has been lots of fun but most importantly people are contributing to a cause that is really important to me and my family. 

Being disabled means I’m not able to do a big marathon or climb a mountain, like most people would do for a big sponsored challenge. It limits me but I’ve made the best of what I’ve got and it’s been a huge success so far.

Since Charlie died, our family and friends have been busy fundraising over the years and we raised just over £37,500. In the past three weeks we have raised another £1,100 with my challenge. I intend to carry on for 30 days in total and then finish with a group song on the anniversary of his death. We want to involve as many people as possible to bring awareness of meningitis and of course, much needed funds for the charity. More details are on my social media pages if you would like to get involved.

It’s been really important for me mentally, to feel that I’m contributing to his cause and bring myself out of the depression I find myself in this time of year. Several friends have shared a meme which states “the trees are about to show us how lovely it is to let things go” but that couldn’t be further from the truth for me. Autumn is about loss,about death. I needed to make it about something more positive and what better way to do that than by raising money in memory of Charlie. Even if it means making a complete fool out of myself!

To read more about my fundraising efforts follow my Instagram page Yet Another Mum Blog or Facebook page Yet Another Mum Blog You can donate to Charlie's fund here and help us reach our goal of £40,000.

"Walk A Day In My Shoes" Fundraiser

Firstly you need to know two important things about me. 1) My son Charlie died from meningitis, eight years ago, when he was three months old. 2) I have extremely limited mobility and I am a wheelchair user with severe epilepsy.

Ok, now we have those facts out of the way, lets get on to the good stuff! Eight years ago we set up a fundraising page for Charlie at Meningitis Now. The link to it is here. We have currently raised £37,741.06 and my goal is to reach £40,000 before 28th October 2018 which is the anniversary of his death. At the very least I want to get closer to my target and I'm prepared to make a complete fool of myself to do it!

As I am disabled I can't do a sponsored run or even walk. No skydiving or difficult training courses for me! I put it to my friends for fundraising ideas and they came up with some great ones.

Anyone who follows me on Facebook or Instagram knows I have a particular leg pose during the summer months. The first sight of sun and the legs are out! One of my friends suggested I recreate this leg pose whilst wearing shoes borrowed from friends. The crazier the better and I'm going to try and take pictures in some bizarre places, although this will be health dependent.

Another thing I'm well know for is my love (and lack of ability) of singing. Another friend suggested I sing some songs so I decided I would tie in a song with the choice of footwear. For example yesterday I wore my daughter's rainbow wellies (child size 10) and sang the song If This Isn't Love from Finian's Rainbow. I had never heard of the song or musical before so it was a real challenge for me to learn it. The person who requested the song then made a donation!

Today I borrowed a pair of football boots from my nine year old next door neighbour and sang the John Barnes rap from World in Motion! You see how it works?

My challenge is to do 30 days although they won't be consecutive and I will complete it by 28th October. If you want to see me looking absolutely ridiculous then please follow my Facebook and Instagram pages which I will keep updated with photos and videos.

If you want to read why this cause is so important to me and find out what happened to Charlie then his blog is here.

Any amount, big or small, will be very gratefully received. You can donate by following this link https://charlie-benjamin-mann.muchloved.com/ 

Thank you so much. 

We Need To Rethink Disabled Access In Public Places

After over two years in a wheelchair I can safely say the world is not a wheelchair friendly place. Yes, there are rules and regulations to follow and there are some measures in place to make places accessible. The Equality Act 2010 states that “public places must take positive steps to remove barriers disabled people face to ensure we receive the same service, as far as this is possible, as someone who is not disabled” (taken from www.citizensadvice.org.uk). That doesn’t mean common sense always comes into play though.

I’ve just spent the past 11 nights in a hotel in Ibiza. A beautiful holiday and quality time with my family in the sun. We researched the hotel before we went. As someone who is disabled, I feel like I’m almost qualified as a detective, trying to find a hotel with suitable access for my wheelchair.

The hotel we picked ticked all the boxes. Three lifts, ramps everywhere, we were on to a winner. On arrival it soon became clear that although these were indeed in place, the actual people in the wheelchairs (there were three of us while I was there) were an afterthought. Tables, sunloungers and trollies were placed at the end of the ramps. Lifts so small I couldn’t push myself into them with my self propelled wheelchair. Thankfully I had family with me to move items and get me into the lifts but there was no way I could have managed alone and a motorised scooter just wouldn’t have been possible. I realise it would have fallen under Spanish regulations and not ours but it highlights the issues disabled people face.

It’s not the first time I’ve had problems in public and i’m sure it won’t be the last. Ramps that have been at the bottom of a cupboard have had to be dug out for me. Special entrances to get into places draw even more attention to my condition. As a person in a wheelchair, I don’t want to stand out any more than I already do. 

I also want to be independent. I don’t want to have to ask for help. I’ve had nothing but kind offers from people who have carried me, lifted me and gone off to find the one person in the place with the key for the back door. What I want is to be able to access buildings like anyone else. As mentioned in the Equality Act, I want the same level of service as someone who is not disabled.

We might be a small minority but what about inclusivity? I don’t want to be different. I don’t want everyone staring at me while I’m carried around because my wheelchair won’t go up the stairs. It has reduced me to tears on many occasions and the humiliation is heartbreaking for me. It’s another reminder that the world doesn’t see me as important. That I am an inconvenience, another cost for businesses to pay and the hassle of getting the right equipment.

So what can we do about it? As a community let’s push public places to include disabled people, not just as minimum regulations, but as people with feelings. Put yourselves in our shoes. Would you want to live an independent life? If the answer is yes then please look at your access. Are all your customers treated as equals? That’s what we should be aiming for. I understand we are not their main focus and only represent a small proportion. If they have things in place then that’s great, make sure we can access them easily and make us feel like any other able bodied person. We want to be independent and feel included and there are many changes that need to be made to make that happen.

This blog was first published by The Huffington Post here  

Adjusting To A New Shadow - Life In A Wheelchair

This is a photo that I took on holiday last year but it’s a particularly poignant one for me. My shadow shows me in a wheelchair and disabled but inside I’m still the same person I always was. My shadow may be different, my life may be different but I’m still me. It’s photos like this that hit hard how others perceive me. They see the wheelchair, not the person who is in it. I feel like it’s my job to change this perception and remind people I’m still the person they once knew. 

I’m still Katy. I still have the same personality. I still love cheesy pop songs, dancing (albeit wheelchair dancing now), singing and going out with friends. I still get drunk on two glasses of wine! I’m still obsessed with historical fiction books and enjoy watching reality tv. I still have the same sense of humour and I’ve developed a love of writing which has become my purpose in life, alongside being a mum. I still want to be invited on nights out even if I can’t always make it. I don’t want to become invisible just because I happen to use a wheelchair to get around. 

My body is heavier thanks to the side effects of the many medications I take and, of course, older with wrinkles starting. The adjustments to my appearance have been tough for me to deal with. I’m very much about promoting body confidence and loving who you are but that has been a personal challenge for me. Putting on weight is out of my hands due to the medication I’m on, it's not something I have control over and exercise is out the question with the type and frequency of seizures I have. I’ve had to lower my expectations and not beat myself up for not having the perfect "Love Island" body. I’ll be 40 next year and I want to celebrate that. I’m lucky to be alive. Not all people with epilepsy make it to 40 and I went undiagnosed for 12 years. I have to accept who I’ve become and embrace it. I might not look like I did in my twenties but who does? 

Strangers and aquaintances don’t like to ask why I, overnight, went from a normal, healthy person to not being able to walk. The truth is, I’ve been ill for almost 14 years. Yes, I’ve had periods of being better and lived a fairly functional life, but I hid a lot of my symptoms from everybody except my Husband. I didn’t want to be dismissed by doctors yet again. I couldn’t go through the disappointment, after a terrible experience I had when I first got ill, back in 2004. This time I declined very rapidly in February 2016 and have been in a wheelchair ever since. Thankfully I've finally got a proper diagnosis, with Epilepsy, although it still isn’t under control. Now there is no hiding my condition. It’s there for everyone to see whether I like it or not. 

I’m always happy to explain my condition and I make videos about it on my YouTube channel, explaining the different types of Epilepsy I have and dispelling some myths surrounding it. I’d rather people came to talk to me than ignore me. Don’t be afraid to speak to people in wheelchairs. We are still human and a lot of us don’t think of ourselves as being in one until we catch sight of that shadow on the ground. Remember the person on the inside, don’t just see the chair. 

Videos Explaining Epilepsy and Dispelling Some Myths

Here are three short videos I made, which briefly explain the types of seizures I have and how they affect me. I also try to dispel some myths about epilepsy itself. Please follow my YouTube channel for other videos I upload!

Part 1

Part 2

Part 3

My Breastfeeding Journey Didn't Stop When I Finished Feeding My Children

You’re probably sick of hearing about World Breastfeeding Week but bear with me, my journey is a little different. Yes I breastfed my three children but that is only a small part of how breastfeeding has affected my life for the past 12 years. Actually if you speak to any mum, every journey is different. It doesn’t matter if you breastfeed, formula feed, combi feed, however you do it, we all have a unique journey.

 

My eldest son was my most difficult. Reflux meant he was sick several times a day, didn’t put on weight and I constantly questioned myself and if I was doing it right. My second son was a very similar story but sadly he passed away from meningitis at 15 weeks old. Our breastfeeding journey came to a very abrupt end but my own personal story continued. I carried on expressing my milk for months after his death and donated 22,345 mls to Wirral Mothers’ Milk Bank who used it for premature babies. My third experience, with my daughter, was much easier and in total I breastfed my children for six years and five months.

 

That is only part of my journey though. In November 2007, five months after my eldest son was born, I trained to become a peer support worker. Mum-to-mum support in other words. I didn’t know at that point how many people would reach out to me for help. I had a fantastic mentor and together we went to speak to women who were unlikely to breastfeed. I took my 11-month-old son into a class of Year 11 girls and breastfed him in front of them. I’ve never seen so many shocked faces! Not only was it taboo to them to consider breastfeeding (rates were particularly low in that area) but he was almost one so he was doing nursing gymnastics (on, off, run around, back on again). 

 

I also went to speak to a group of pregnant teenagers who were open to breastfeeding but their families were dead against it. I gave words of encouragement and again a demonstration but I knew they were fighting such a tough battle. I often wonder about them and if they were able to push past those barriers. I can only hope I had some small amount of influence on them.

 

I became a volunteer at my local Children’s Centre and each week offered advice, help or just an ear to listen to those who needed it. I became an advocate for people who needed help, taking part in local news segments and online support groups.

 

I’ve always been very vocal on social media about what I have learnt so friends have been able to contact me and I’ve supported them through the tough times. My motto is “my inbox is always open and if I don’t know the answer, I will find a person who does”. Mum-to-mum support is vital and that doesn’t matter how you choose to feed your baby. I would also offer the same support to anyone who was formula feeding.

 

I’ve been advocating for mums for almost 12 years now and I will continue to do so as long as the need is there. As there are more and more cuts in services we need more people to do the same. Let’s forget the mummy wars and be there for each other. It’s something I feel very passionate about. If you need me, I am always there to listen. Let’s stop the judgement and don’t be afraid to ask for help.

 

This blog was first published on the Huffington Post website here 

The Summer Holidays Are A Whole Different Ball Game As A Disabled Parent

Today marks the first day of the long, oh so very long, summer holidays. Most parents are either tearing their hair out wondering how to entertain their little terrors (this only becomes a phenomenon in the holidays and weekends, they are perfectly normal human beings at school) or perfectly planning a strict timetable of activities to keep their little angels entertained. 

 

As a disabled parent, the school holidays are a whole different ball game. It takes an army of people to care for my children. I can’t even compare it to that of a working parent as I’m not even able to put my children to bed myself. The people involved in looking after my children take care of them from waking up to going to sleep.

 

Each week my in-laws very kindly take my children out to various locations to let them burn off some energy. My dad even makes a four-hour round trip one day per week to come and help out. My in-laws have them the rest of the week. They all go far above and beyond their duties as grandparents. I also have friends who arrange play dates so I can be involved with the kids. Friends have offered to have us round for the day which means I can spend some time with friends and proper time with my children.

 

Without all these people in our lives, we wouldn’t be able to survive. I can’t work due to my uncontrolled epilepsy so a holiday club is out of the question. It’s just not affordable when you aren’t working, to have two children in childcare when they are school aged. Juggling the kids is a military operation. Diaries out, who can do what day? I would give anything to be able to keep my kids at home or take them out by myself.

 

I can’t look after myself without two carers to help so it’s just not possible for that to happen. I look longingly at pictures of friends on days out and wish I could do the same. It’s hard for the kids too. They adore their grandparents but it’s not the same as being with mum. I can’t even go with them because I get too tired and ill. I can do the odd day here or there at someone’s house but that’s all my body allows me to do. 

 

Thankfully my husband is able to get two weeks off and we get to have quality time together as a family. That is the highlight of the summer break for me. Time where I can pretend to be a normal mum and get fed up with my kids fighting. I feel these days with my children are slipping through my fingers like sand. Every day is a day of their childhood I have lost. The summer holidays brings this home even more. My 11-year-old son’s Christmas wish in his school book was for me to get better so I could spend some more time with him. It broke my heart. 

 

I’m pushing myself as hard as I can, to be physically with them more and to get out to places, with help from other people of course. If only I could wave a magic wand and be back to the mum I was two and a half years ago. My youngest barely remembers me like that. Summer holidays can be the best and worst of times.

 

Don’t take for granted the time you do get to spend with your children. I know they are a pain most days, all kids are, just remember those who can’t and who wish they could be tearing their hair out too. I look back on photos of summer holidays gone by and the never ending days, wishing it was nearly bedtime. Now I’d happily go through that again. I’d still feel the same but at least it would be me getting fed up of them. 

 

Life with a disability is tough. Everyone knows that. It’s the milestones you miss out on that are the hardest though. In a blink of an eye there won’t be any more summer holidays left but I hope to be back to being mum again before that happens.

This blog was orignally posted on the Huffington Post website here 

How Music Helped My Battle With Depression

Music is a vital part of me. It influences my mood. It links interchangeably with events in my life. I can pinpoint different stages of my history just by hearing a certain song. It can whisk me back to a time period within hearing the first few beats. 

 

It has only been recently, with my battle with depression, that I’ve realised how important music is to my soul. It has the power to lift my mood with the right song and bring me to tears with a different one. 

 

I use music as a form of therapy. After my first grief counselling session, the first thing I did was play some music. By some coincidence or higher force (whatever you choose to believe) one of the first songs to come on was the song we played at my son’s funeral. I hadn’t heard it in eight years and the force of emotion was incredible. It took me right back to that day and in some way was helpful in my grieving process. It forced me into facing that day again in my head and processing those thoughts. 

 

In the depths of my depression I listened to songs that made me feel good. Ones that reminded me of good times. I used to love dancing. Sadly I’ve lost the ability to dance with my feet by being in a wheelchair but I can still throw some shapes with my arms. It may not be conventional dancing but I give it all I’ve got. 

 

Unfortunately I wasn’t born with the gift of a beautiful singing voice but it’s one of the things I love to do. What I lack in talent I make up for in enthusiasm. One of my current inspirations is ‘The Greatest Showman’ for its feel good music and positive story about those who are different. It might not be the true reality of what really happened but it’s touched the hearts of people like me. People who are not the “norm”. 

 

I certainly wouldn’t be put up on stage but I don’t need one. My stage is my garden, my house, the car, anywhere where I can belt out a song. That’s my passion and pleasure in life. I’m inspired by a huge variety of music and I regularly post my song of the day on social media. It can be anything from Dr Hook to Kylie Minogue, just whatever fits my mood that day. 

 

Music brings us together. It reminds us of the good and the bad. It defines and shapes our lives. I know my friends will always associate me with certain songs and I love that. I love that when they hear a song they think of me. I do the same and when I hear a song that I associate with someone it reminds me to get in touch with them.

 

I’ll never be the greatest singer but even just listening to music gets me through bad days. Some songs just reach a place nothing else can. They can touch your emotions and express what you can’t always say. They tug on your heart strings, make you smile or just make you want to get up and dance.

 

I couldn’t live without music. When I didn’t listen to anything for a while, I lost myself. I won’t let that happen again. So if you hear someone belting out a song (sometimes badly), smile and remember the joy it is giving them. 

 

This blog post was first published by the Huffington Post UK website here 

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How we Deal With Our Late Son's Birthday

On Sunday, it’s my son Charlie’s eighth birthday. We’re having a party with friends round and their children, lots of party food, a cake and even some cards and presents. Nothing odd there? It sounds like any normal party for any normal eight year old. The difference is that Charlie died when he was three months old, in October 2010.

 

We’ve always celebrated his birthday, every single year since he died. We’ve been to theme parks, adventure trails, had parties at home and treated it exactly as we would do as if he was here. You might think that weird. You might think we’re holding on to something that isn’t there and not letting go of the past. In truth, it helps us and our other children, deal with our grief and our emotions.

 

Charlie is still very much part of our family and by ignoring his birthday we would be going against everything we’ve fought for. We’ve tried many ways to keep his memory alive with fundraisers and awareness campaigns. We include him in family photos, in our Christmas traditions and every way we can. His memory lives on with all our family and friends.

 

Everyone is different and the way we deal with his birthday isn’t for everyone. Some might ignore it and bury it in the past. There’s nothing wrong with that either. It can be too painful to talk about, too raw to deal with. For us though, we throw ourselves wide open and shout from the rooftops that it’s Charlie’s birthday! We say to our friends and family, please celebrate with us, in whatever way you can. 

 

For me it could never be a date I could ignore. I gave birth to him. It’s the anniversary of the day I first laid eyes on that jet black hair and those beautiful lips. It’s the day I first breastfed him, our first cuddles, our skins touching. The first time I heard his voice and saw those chubby cheeks. It’s the anniversary of his arrival! I could never not celebrate that.

 

We’ve always wanted to make it a positive event for our other children, aged 11 and six. Our six year old was born after Charlie so never knew him but gets very excited about his birthday. She loves to make him a card and sing to him. Whenever she draws pictures of our family, Charlie is always included in them. He’s usually a little higher than the rest of us, to represent that he’s “somewhere in the sky”.

 

The way we do things is not a path everyone chooses who has lost a child but then each journey is different. Charlie is not a secret that we will tell our children when they are older. His pictures are all over our house, he is mentioned casually in many of our conversations. He’s just one of our three children. Not somebody to be hidden away. 

 

His birthday will be a big event just like my other son and daughter’s birthdays. We will celebrate in just the same way. He’s as much a part of our life as he would be if he were alive. We’re not clinging on to something that isn’t there. We’re holding on to something precious, a person that we treasure and love. 

 

I won’t pretend it’s easy, having a party for someone who isn’t with us anymore. It’s heartbreaking for me knowing I should have a real life eight year old instead of just memories of a three month old. I don’t know how I would get through it, if it wasn’t for good friends who will rally round me that day. Each year I find the lead up to his birthday incredibly difficult and regularly break down with grief.

 

It’s another tough day to get through but why not try and celebrate everything about him instead of just mourn him. I can do both at the same time. 

 

This post was first published in The Huffington Post UK here 

You can read more about Charlie's story here

Coping With The End Of Primary School

As the mother of an 11-year-old currently in Year 6, we’re fast approaching the end of primary school with much trepidation. Memories of our brand new bundles of joy are fading fast and suddenly we have hormonal, lanky pre-teens to deal with.

 

This is an incredibly difficult time in their lives, somewhere between a child and a teenager. Let’s not talk about them though, it’s us as parents who have to cope with our babies coming to the end of primary school! 

 

It’s us who go through every emotion at the last sports day, last assembly, last report, awards ceremony, tie and tiaras Ball and everything else they put you through in the last few weeks of term. I cried just by reading the school newsletter! The dreaded anticipation of saying goodbye to the school who has nurtured him so well.

 

It’s us who are wondering what creature will come home on their first day of secondary school. Will they still be the loving child I sent that morning or will they suddenly, overnight, become too cool for cuddles? Will he still want to be seen with us? 

 

Suddenly my child won’t be a child anymore. His friends will take priority. He will become more independent. All normal and healthy things for his age but what about the mum left behind? 

 

As we navigate these new waters I know it’s tough for him too. I can only praise his new school for putting on extra events for the new starters, such as a disco this term for the current year 6s and year 7s, to help them integrate. They have been fantastic and I know they will continue to help him settle in September. 

 

I’m also full of praise for his current school and teachers too, for providing us with the opportunities to appreciate and mourn our babies growing up. They have provided a great base for him to move on to the new stage in his life. They have worked hard putting on events for us, to make memories and treasure these last few days.

 

As I look back at pictures of my tiny newborn, just over 11 years ago, it’s hard to believe we’re here already. It was hard enough when he started primary school! In five short years he will be doing his GCSEs and I’ll be going through this mixture of emotions again. 

 

Our job as parents is to raise them to be independent, happy, well rounded adults. Personally I’d prefer someone to invent something to keep them little! Each stage has come with the good and bad and we’ve faced different challenges along the way. 

 

My 11-year-old is fast catching up to me height wise (I’m pretty small, this isn’t much of an achievement!) and in the coming years will tower over me. The teenage years are fast approaching and everything that comes with that. The toddler years are now looked back at in a fond way, not the hell they really were! The rose tinted glasses are well and truly on. 

 

So it’s time now to get the tissues out, enjoy the last few weeks of primary school and hope I still have my boy in there, somewhere, come September. High school... please take good care of him for me.

This blog post was first published by the Huffington Post UK website here

This Is Me

On Saturday we had a BBQ with some friends and had a brilliant day and evening. For those that know me, what came next would not be a surprise! I love to sing and dance and I’m just a show off in general. I can only dance sitting down in my wheelchair and despite my best efforts I can’t sing a note. What I lack in talent, I certainly make up for in enthusiasm! So here is a video of me singing my heart out to The Greatest Show. What can I say?? This is me!

POTS

On Monday I went to see a Cardiologist for a two year follow up appointment. When I relapsed over two years ago I was tested for everything under the sun. I saw pretty much every “ologist” you can think of. One of them was a Cardiologist to rule out any heart problems. 

I had a 24 blood pressure monitoring and a 5 day ECG test. All came back clear thank goodness. The only thing that kept being floated around was POTS.

Postural orthostatic tachycardia syndrome (POTS) is a condition where when you change from lying to standing it causes an abnormally large increase in heart rate. A possible reason for my falls.

Of course later I was diagnosed with Atonic Seizures which explained the falls so POTS was put to one side and dismissed.

It has only been brought up to me by one Consultant, last year, who also suggested I had viral meningitis back in 2004 when all this started. His belief was that I have many neurological conditions due to this. Predictably other Consultants disagree. 

Anyway, back to Monday. I fully expected for it to be a complete waste of time and for me to be discharged but instead I was cautiously diagnosed with POTS. This goes alongside my epilepsy and the other 4679379 conditions I have. 

There is medication for POTS but as I’m on a cocktail of drugs already and they have particularly bad effects it was agreed I wouldn’t start anything new. 

The advice was to always keep hydrated and eat more salt. Eat more salt I hear you say?? Yes really. Bring on the McDonald’s! That was what he was saying, wasn’t it?! 

So I say cautiously diagnosed because no doubt next week I’ll get a letter saying it’s not POTS. Did I ever tell you about the time I was diagnosed with psoriatic arthritis for four years before some random rheumatologist came in, looked at me for two minutes, and took the diagnosis away. Now I don’t want arthritis but if I do have it I want the proper treatment for it. That’s been put to one side for now while I deal with my current problems. We’ll come back to that a later date.

Now we don’t know if (a big if) I have POTS what proportion of my falls are seizures and what are POTS. It’s one big guessing game and I’m the little person going round the board while the Consultants play. 

Do you remember the Raggy Dolls? I’d definitely be sent to the reject bin!  It’s a good job I know other raggy dolls who can join me. 

The saga continues...

When Mother's Instinct Doesn't Work

Everyone has heard of mother’s instinct. It’s well known that when you become a mother you get this magical power, that you can spot when your child is ill, especially if there is something really wrong. It’s instilled into you as soon as your baby is born that you will have this instinct.You will know. 

Except what if that instinct doesn’t work? What if it doesn’t kick in? What if your baby becomes ill and you put it down to just a general bug but really they had a very severe form of meningitis? 

Well that’s what happened to me. I didn’t know my son was seriously ill. My mother’s instinct failed. As a family we were all ill so I had no reason to think anything was amiss with my three month old son. The difference was, that at the end of the week we all got better and Charlie’s illness developed into meningitis. He died a week later. The signs of meningitis are very similar and there was very little difference in his behaviour than from the illness that preceded it. 

I’ve spoken to enough people who know about meningitis in a medical capacity to be satisfied that it wouldn’t have changed the outcome. He had an extremely bad strain of it, pneumococcal meningitis. One of the worst. I still feel a huge amount of guilt though. Why didn’t I know he was seriously ill? Why didn’t I have that instinct that something had changed in his body? Should I have known the signs? 

Mother’s instinct is just another part of the mummy guilt we all feel. It’s another addition to the list of things mum’s should have. Nobody talks about a father’s instinct. What if instinct is just a myth and actually it’s good luck and good timing that some people pick up on things that others don’t? 

I’ve spoken to mums in parenting groups who say the same thing. So why do we feel so much guilt about it? Why do we, as mother’s, feel the pressure to know what doctor’s don’t? Why do I beat myself up that I should have instinctively known he was in danger, when even the health professionals didn’t know? 

I hope there is someone reading this who has felt the same as I have and knows they are not alone. It happens to other people too. It doesn’t make you a bad parent. We’re human, we miss things. When you have a small baby you are a sleep deprived, hormonal mess. It’s hard to think past anything other than feeds, sleep and nappy changes.  

“Trust your instincts” is all you hear when you have children. Whenever my children get ill now, I am unable to trust my instincts. My experience has taught me that not all illnesses are harmless and they could die from them. My first reaction to any illness is to take them straight to A&E which of course is a massive over reaction. Thankfully I have a very sensible husband who calms me down and keeps me relatively sane.

My mothering instinct failed me once. How do I know it won’t fail me again? I don’t and I have to live with that. I just need to let the go of the guilt and accept, like all the other mum’s out there, I’m not perfect and that’s ok. We’re just doing our best, whether we have great instincts or not. 

For signs and symptoms of meningitis contact Meningitis Now on 0808 80 10 388

To read more about Charlie read his story here

This post can also be found on the Huffington Post UK website here

My YouTube Channel

I must be mad because I hate the way I look and sound on videos but somebody has requested I do vlogs on some of the subjects I blog about. I’ve started a YouTube channel called YetAnotherMumBlog and I would love it if you would subscribe to it and give me a thumbs up if you  watch my videos. To get started I made one about talking to young children about living with a disability, having Epilepsy and being in a wheelchair. Take a look! 

https://www.youtube.com/watch?v=MFXWu6TOs4E&t=2s

I Forgot To Grieve For My Son

Eight years ago in October 2010 my son, Charlie, died very suddenly. He contracted meningitis at 14 weeks old and died a week later. It was a horrendous week of agonising lows and culminated in us having to turn his life support off. The next day we had to go home without him. My body was still making milk for a baby that wasn’t there, my arms empty, I was in post partum mode and my brain was wondering what on earth had happened?

He was gone but my body and mind couldn’t accept it. I carried on expressing my milk and donated it to premature babies. I couldn’t bear to stop producing milk. It was such a big part of my relationship with him so I wanted to stay in that mode, I wanted to still be the person who had a baby in their arms. For those moments I could close my eyes and pretend he was still alive. 

I threw myself into a massive campaign to raise awareness of the signs of meningitis. I tweeted every celebrity I could think of to get people to read Charlie’s story. I did interviews with magazines, newspapers and radio. All the time what I was really doing was pushing my grief away. I put it in the “to do” pile. That could come later. I had work to do. 

I couldn’t look down and see the big gaping hole in my life and all his things gone (as requested by me). It was too unbearable to think about. Too awful to be real. So I didn’t think about it. I thought about raising money and saving other people. It sounds admirable and brave but it was just a coping mechanism. A way to avoid going through the grief process. 

Then six months after his death I found out I was expecting another baby. We’d made the decision to have another baby fairly quickly for many reasons. Partly so there wasn’t too much of an age gap with our eldest son and partly to give us something else to focus on and look forward to. 

Again the grieving process was put on hold. I was pregnant, I couldn’t grieve. At least that’s what I told myself. It was another reason to put it to the side. Another excuse to bury my head in the sand that he’d gone. 

Life went on and we had a daughter who kept my mind occupied and my arms were full again. She was never a replacement for Charlie and never will be but she was a welcome distraction. I was so full of love for her and still am.

It was only recently when the Alfie Evans case was all over the media that I had a breakdown. It was similar to our case in many ways. Same hospital, he was in intensive care and we had to turn his life support off. Charlie could have been in the same room, had the same doctors and staff as Alfie. To see people call out murderers to them was too much for me to handle. I don’t think those protestors realised the harm they were doing to the other parents in Alder Hey. By fighting for Alfie they were causing great distress to the other parents and children who were in there going through their own battles.

With all those feelings I’d pushed away, now bubbling to the surface, it made me realise; I’d forgotten to grieve. 

I’ve now started having grief counselling through Meningitis Now and working through my feelings. I’ve finally stopped the excuses and I’m now learning to accept that he died and is not coming back. Even writing that hurts unbearably. 

I don’t recommend my coping strategies. They may have seemed positive at the time but they just put off something I was always going to have go through. It’s so important to experience that process early on and not push it away. As a wise friend once said to me “grief isn’t something you can go round, it’s something you go through” Almost eight years later I’m understanding that and starting on the long journey to acceptance. 

The Meningitis Now Helpline is 0808 80 10 388.

Charlie’s story can be found at http://charliecheekychops.blogspot.com/

This blog post was first published by the Huffington Post UK here