Thursday, 12 July 2018

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

Sunday, 8 July 2018

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

Monday, 2 July 2018

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!





Thursday, 28 June 2018

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...


Monday, 25 June 2018

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

Tuesday, 19 June 2018

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! 

Friday, 15 June 2018

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