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!