Tag Archives: disability

To love is to be vulnerable

I am in a little bit of a state right now, anxiety is winning the battle for my mind and my soul.

I hate that I get this way, I wish I could lie still in the peace of faith but I cannot. In fact I suck at lying still anywhere.

Tomorrow my little one is having an MRI which requires him to have a general anaesthetic and the fear of the ‘what if’s’ are just eating away at me.

Do I pack for more than a day? Can I trust he will be out on the same day as planned and the major one and the truth of my heart, will he be ok?

My head tries to remind me of how many people have this kind of a test each day, how its a simple non invasive test but my heart just is screaming “My son”.

Having a child with complex needs leaves you open and fearful. Your heart and mind goes to places many others never venture. Being a mom who has lost a child my mind has been there and lived it and somehow is just about surviving it.

So why do I do what I do?

This is a question I get asked a lot, mostly from parents who have children with disabilities or those that have lost a child. Why do I put myself back there. Why have I adopted, why a child with complex needs and why do I risk my heart again?

To be truthful I am not sure I have an answer for this question.I think we need to go back to the beginning. I truly believed I was a weird child, I struggled with emotions and worries before I even knew what they were. Sensitive to other people’s feelings to an extent that would have me cry myself to sleep with another’s pain. The world seemed a scary place and people often cold and distance. I didn’t understand people and to be honest I am not sure I actually do now.

I would watch people destroy each other with words out of hate, jealously or indifference and I just wanted to run and hide. I tried often to lose myself between the pages of a book preferring the lands of make believe to reality. When books didn’t work I turned to alcohol just to allow me the freedom from thinking, from caring. A few drinks in and life made more sense or so it seemed. But with sobriety came reality and my reality was that I was difference and that was something I had to find a way to accept, to understand.

I had to learn to embrace who I was and the ways of my heart. Understand that oblivion wasn’t a place I could stay or actually a place I really wanted to be.

I had to find what made me happy and that journey of self acceptance started with my marriage but mostly from becoming a Mom. I guess this reads as mush but I truly believe being a Mom allowed me the freedom to know and understand true love. Everything I wanted for my children was what I had always wanted for the world, It was a real aha moment.  But being a Mom is scary stuff besides having to feed, clothe and keep these little ones alive you are the window through which they start to see the world. I never wanted them to feel weird or difference. I wanted them to realise that they were unique, that each of them had been individually made with purpose. That they were exactly who they were supposed to be.

But guess what if my children were made with purpose and they are exactly who they are supposed to be then by default this means so am I.

Yes I may be a little weird or strange (I’ve been called) my heart may break more often than others and I may love with an intensity that seems insane to others but this is me. This is my heart and just as my girls were perfectly formed in my womb I was in my mothers.

I still strive for answers to questions others don’t understand, I think way more than should be humanly possible (my husbands words) but I am who I was meant to be.

I love to love. 

This is me in a nutshell.

I love the joy of knowing that someone understands how valuable they are, how they are a gift to my life in so many ways. I want everyone on the planet to know their true worth.

Happy clappy, airy fairy, who cares, I am who I am.

So why wouldn’t I be sitting here in a state of fear loving a child that was not born to me. The biology bit is irrelevant, God called me to be his Mama and I am so damned happy he did. Yes it’s scary, yes I am fearful but I am so blessed to love this kid.

Why did I adopt?

Why not, when there are children in this world that needs a home and someone to love them, why shouldn’t I. The complexities of anyone comes in so many difference forms, who cares, we are all uniquely and wonderfully made.

I feel C.S Lewis says it perfectly here, “to love is to be vulnerable” but after spending so many years of my life trying to stay in that dark and safe casket I can truly tell you that right now I am fearful, but I am living fully.

Anxiety, heartbreak and fear they are emotions that do and will often overwhelm me, this is part of who I am. Acceptance of these is still journey I am travelling. But non of these compare to the joy of living my life fully, how being true to my heart is freedom in itself.

It’s not our choice

Having a disabled child wasn’t part of my life plan. I was shocked, confused and generally devastated at first. I had to slowly find my own peace with the life that I had and the disabilities of my child. But if I am honest there were times where I was frustrated and angry at the way her condition controlled my life.

I couldn’t holiday easily, we couldn’t get insurance to fly for a start and the fact  that there was always a high risk of cancelling, due to hospitalisation, illness etc.

I couldn’t work full time, there was no way I could meet all her needs, hospital appointments and therapies whilst being a productive employee.

I couldn’t have an evening out without proper planning in advance and hoping that I would get some respite that was few and far between.

At times I couldn’t even go to the toilet on my own without fear of her seizuring in my absence.

There were so many choices taken away from us all. 

But the reality is that my lost choices were nothing compared to what Livvy faced.

Right now my local council has decided that parents of children with special needs post 16 have to pay towards their transport to school. Their reasoning is that most parents have to pay when their child goes to college etc and that its only reasonable that we put towards this cost as transporting our children is expensive.

£600 a year, is this fair?

Lets look at this closely,

I didn’t choose my daughters school, I didn’t get to make a decision on league tables or the curriculum offered.

My daughter didn’t choose her school, she didn’t get to view different courses, or placements and come to a decision that was her’s. No the council and it’s professionals made the choice that this was the school suited to my child’s needs.

They didn’t consider the fact that every morning she would see her sister’s get up and dressed in a different school uniform and watch them leave with their friends.

They didn’t consider the fact that maybe she didn’t enjoy travelling 30 minutes each morning and afternoon to and from school.

They never considered that myself and many other parents like me struggle to be in two places at the same time often twisting ourselves up with guilt from missed performances, parents day and so much more.

No they made the decision on the best place to cater for her needs and I understand that. Yet why are we being asked to pay for something we had no choice in?

I am actually not saying that I have an issue with paying towards the service but I do think it should be in line with the costs I would have to pay for my other daughters. I don’t know many parents that have a spare £600 lying around and if someone mentions mobility to me again I may scream. Have you tried to fill the tank of a mobility vehicle on what our child receives each week? Do you drive to numerous medical appointments, pay for parking at so many hospitals for again reasons beyond our control, our choice.

Olivia didn’t choose to have Rett Syndrome, she didn’t choose to fight each day. She didn’t choose to have uncontrollable epilepsy and she certainly didn’t choose to lose her battle for life so early. 

I am so tired of seeing disabled people persecuted for something that is out of their control. Our children didn’t choose not to go to the local school, they didn’t choose not to be able to walk the journey on their own, backpacks on their backs as they laugh and joke with their friends.

They didn’t choose this life and as their parents we didn’t either.

Yet right now our local council are making parents feel as their children’s education is a luxury, a luxury that they have been funding. I’m sorry Walsall Council I completely disagree. You have an obligation to support our children with an education, the fact that these education placements are far and few between well that with your current funding and cuts to school is only going to become more of an issue and isn’t our fault or our choice. Do you not think we would love to walk our children to school, to chat with other parents on the playground, to be able to feel less alone in our already isolated worlds?

But before you harp on at parents already struggling to survive with reduced respite, reduced support,cancelled play schemes etc please remember this, these children, these parents they don’t have a choice.

Our lives, our children lives are far from what we had planned. When we celebrated their conception and decorated their nurseries we never imagined the lives we had yet to live.

We are trying, trying each day to make the best of it all. To love on our children with all that we have. To fight for therapies and support that will enhance their quality of life, and most of all we fight for their happiness, their chance to do whatever they dream.

Because whilst you may see them as expensive, we see them our hearts.

Trolling should be a criminal offence.

I love the internet, it has widened my world more than I could have ever imagined. I have met and become friends with people that wouldn’t have come into my life without the wonderful world wide web. I have experienced friendship, support, advice and so so much more.

Yet in the mist of all this positivity there are some that use the internet just to be idiots. They hide behind their keyboards to insult, mock and bully. They are cowards in the worst form.

I personally have received some vile emails and comments, people mocking the death of my child, my size, my life. They have crawled out of the their pits of slime to abuse, insult and tear me down. Their words have hurt and scarred.

But who do I get angry at?

They hide behind user names and false identities.

Did I mention they were cowards?

Thankfully Katie Price has decided that she has had enough. After years of her severely disabled son Harvey being mocked and bullied online she has started a petition calling for online abuse to become  a criminal offence. I stand behind her 100%. Whilst she may live her life in the public eye this never gives anyone the right to abuse her  or her child like this. No one has that right ever. Yet here on the internet these trolls, these cowards are free to continue their evil without any comebacks. This has to change. Please join Katie and stand up against these trolls, sign her petition.

We need to make a stand against the horrific abuse people are facing on a daily basic. Racism, homophobia, sexism and so much more. This isn’t a question of free speech its hate in the purest form. It’s time to say enough, sign the petition and also email your MP and ask them to support this and lets get this discussion happening in parliament. Lets bring these cowards out into the open and make them accountable for what they posting.

Countdown to 40

40

 

I realised last night that in under a month I turn 40. This is a major milestone in my life but one I am so excited for.

Growing up I remember thinking 40 was really old, I mean it seemed that my mom was 32 forever so I was sure I would stay this way. Yet time has moved on and I have been slowly creeping towards this age.

I remember when I turned 30 I was really freaked by it all, I didn’t feel ready to be 30 years old I was uncomfortable and not happy in my own skin. Life wasn’t easy and I had just started to show signs of the illness that changed my life. I look back to those days when I was chasing after 4 children under 10 and teaching dance. I remember just not feeling complete as if I wasn’t living life to the full.

Fast forward the last ten years and my goodness a crazy amount has happened. I have walked through some of the darkest moments of my life. My heart has been broken, tore up into millions of pieces and then trodden on. I never imagined at 30 that I would have to bury a child let alone two. I would have never been able to comprehend surviving the loss of my daughter and my foster son. Never in a million years. Yet somehow I have survived, my heart may never be complete but it is learning to love on, learning to beat strongly again and I am learning to live life to the full again.

I know deep down that 40 isn’t really a special age. I mean I preach often about celebrating every day we have here, but still I am rather excited for the day.

This may sound big headed but I like who I see in the mirror now. I may not be a dance teacher or able to fit my bum into a size 12 but I truly love my body and I’m so grateful to it. It has given me four amazing girls, completely different, independent ,inspirational girls. It allows me to foster two truly awesome boys, each a blessing in their own special way. My body may be a little battle worn but it’s not been beaten and I am so thankful for this.

I look back to the person I was 10 years ago and I know I have been on a journey. I use the term “self discovery” loosely  as is the only way to get close to describing  the transformation I feel I have faced.

I love who I am (yes I may have said that before) but I seriously do. I love my emotional side, no more will I apologise for my random tears or unexpected hugs. I’m empathic and I care and this is something I am proud of now. No more calling myself soppy and pathetic, I actually rock.

I love my courage, I am more willing to put myself out into the danger zone, being vulnerable, feeling scared but still moving forward.

I love my brain, it’s ok that I am a little geeky at times, that sometimes the idea of a good book wins against a movie or a night out. That I appreciate my own company and yes at times I get lost in my own mind.

I love myself and I love my life.

As I head towards this birthday milestone I do so with so much gratitude.

Over the last years I have had people walk into my life that have blessed me in so many ways. Friends that love me for me, deep true friendships that can pick up after a time apart just where we left off. Friends I can laugh with, friends I have cried on. I am so grateful for each and every one of them.

I am so thankful for my family, my daughters and my sons each so unique and so beautiful. Getting to watch them grow and learn and experience life is such a wonder, such a gift. My Dad, my Step Mom, my inlaws, my aunts, uncles, cousins, relantionships that I truly value and people I truly love.

My husband, I am completely in love with this crazy man, after nearly 20 years of marriage I still get that flutter in my heart when he walks into a room. He makes me laugh, he drives me insane, but he truly is my soul mate.

I am so thankful that I miss my Livvy, because missing someone is the recognition of an amazing love, a truly unbroken bond. My girl and I will be together again one day, but until then I am going to try and live as she did, fully and with all my heart.

So the count down to 40 begins and I’m so excited. I’m so ready to celebrate the 40 years I have been here with all my family and friends. An evening full of laughter, music and hopefully a gorgeous outfit.

Yet 40 is only the really the beginning, the start of a new stage in life, one I hope will be full of love and laughter and the people that really make my life truly amazing, my family and friends, because with them and because of them I actually love myself more at 40 then I ever did.

 

40 looking good

My Special week

So I’ve just returned from what I often describe as the best week of the year Special kids in the UK camp. The week where one field becomes full with family.

I believe this year for me personally has been the best year ever. 

I pushed my own personal boundaries and chatted to more people than ever and have made some amazing new friends thanks to this.

The camp site we stay on is called Lower Lacon and I can say beyond any doubt that it’s one of the best sites anywhere. They go beyond anything for us all and really make the whole group feel welcome. The facilities are fantastic and always spotlessly clean. 

It was certainly a busy camp with everything from adult colouring sessions to a kids magician.

My personal favourite time is always the Special Kids in the UK Olympics. There is nothing better than seeing the determination on the faces of the children as they line up to race. The wobbly walkers, manual wheelchairs and so many more. You can only imagine the intensity of the men’s race, I’m sure there is year round training for this one. 

Seriously I love this afternoon it just sums up Special kids in the UK for me. Its not about being inclusive, it’s that for one week of a year there are no differences, there are no boundaries. No one looks at what our children can’t do it’s always about what they can.  

Alan getting broody over the youngest member of our special kids family.

This year I finally managed to watch the Ugly bug ball, The annual fancy dress competition. Again I think this year topped all previous ones. With the special guest appearance from the Spice girls, though to be honest I think Old Spices would be a better description.

Truly how amazing are they!
  

  

Add to these Miley Cyrus, a ninja and the cast of Narnia it was an awesome night.

One of the most poignant times of each camp is the balloon release. Seeing the sky filled with colour in honour of those who have gone too soon both breaks and blesses my heart. I was invited to speak before the release but emotion got the better of me. I wanted to honour all those missing but my heart was just broken. One family from our special kids family had laid their beautiful girl to rest last week. My heart just ached for the pain i know they are facing. My words just spilled into tears. Grief holds a rawness like no other. 

I love this camp, it’s a week where memories are created that will last a lifetime. I love that I get to share stories of Livvy with people who remember with me. At this camp I am always a mom to four girls and I am so incredibly grateful for this. 

Livvy is remembered so much on this camp and not just because her name hangs on the tea tent that we sponsor each year but also because we hold our annual Livvy’s Smile tea party. So many cakes, so many smiles no better way to remember my beautiful girl. Check out the hashtag #makingmemorieswithLivvyssmile on social media sites to see the memories we have created, Facebook especially.
  

All in all it was an amazing week, yes I was glad to return home to my bed but I was sad to leave this field. 
I want to say a big thank you to Lower Lacon for their wonderful welcome. It seriously is a fantastic camp site and I highly recommend it.

  

I have especially loved watching my youngest daughter flourish. She became a little like the Pied piper this week always surrounded by children. It certainly makes sense that she wants to work with children with special needs later on in life. I’ve pinched this photo from her Facebook cover. How special is this?

 

 

I want to say thank you to the trustees for arranging an awesome week.

A massive thank you to the BBQ team for their constant effort at keeping us all fed. I didn’t realise how much you actually do each week until I camped behind you. Twice a day, every day you were there working hard and for that and the yummy curry I am truly grateful. You guys rock. 

Special kids in the UK is an amazing charity from the forum to the meet ups it’s a wonderful place for parents and carers of children with disabilities to get support. 

This camping week whilst a highlight of the charity is only a part of what it offers. I cant actually remember how long I have been part of this charity but I’m sure it’s been over 10 years. 

If you are a parent or a carer of a child with special needs check out the website and the forum. Honestly you won’t find a bigger welcome anywhere. 

It’s more than a charity it’s a family.


My Special kids in the UK family.

It’s nearly August (squeak)

I cannot believe we are so close to August. 

This summer month means so much to me. 

This month is filled with the friends I get to call my family. 

My Special Kids in the Uk family.

  

I am so excited to turn my virtual hugs into real ones.

To wrap my arms around those I haven’t seen since this time last year.

To see how people have changed, how the children have grown.

I’m so excited to meet our new families, to get to know how special and amazing each one are.

I am bubbling with joy to be hugging on the new additions, babies not even conceived this time last year but now very welcome members of our crazy tribe.

I cannot wait to congratulate those who have major achievements since we last met. New doctors, new nurses, new drivers , new walkers and new talkers and so many more. 

Each one so inspirational in their own way.

I could cry with the excitement I feel, these people are friends who walk alongside me in the world of disability. 

Those who battle each day, challenging decisions, fighting for support and so much more.

This camp makes my summer.

This field is our island for a week or so.

A place where no one looks at our children differently.

Where no one questions our parenting or blinks an eye at tantrums or melt downs.

Where laughter is the daily medicine that heals our hearts.

I want to laugh with men in dresses, give thanks for women with socket sets.

  
Where,we challenge the term normal in so many ways.

This year is a special camp, well even more special than usual. 

It’s the 10th Anniversary.

  
How incredible is that!

10 amazing friendship making camps.

Camps full of memories that are lasting lifetimes. 

Ugly bug balls, balloon releases and the best last night chats you will find anywhere.

I love this camp.

I have the fire pit ready just have to get the marshmallows.

See you in a few weeks xxx

In honour of Livvy

Saturday was an amazing day, we held a Livvy’s Smile Donkey Tea Party.

The sun shone for us, the donkeys behaved and memories were made.

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I had a truly wonderful time.

I got to catch up with old friends and make some new.

I got to listen to laughter as it filled the air.

I got to watch children cover themselves with chocolate and cream as they ate their cakes.

Donkey rides, cart rides and so much more.

Seriously it was awesome.

Yet as I sat at home editing the photos from the day my tears began to fall.

My heart just ached for the missing piece of my puzzle.

Whilst I was blessed with some amazing hugs from some truly incredible children my heart yearned for my little Tinkerbell.

Birmingham Donkey Sanctuary holds a special place in my heart.

Each corner is filled with the echo of my Olivia.

Those first steps she took defying the Drs.

The giggles as she rode her favourite donkey.

alvis livvy

The dirty looks she gave Amber when told to sit up straight.

So many moments, so many memories.

 

I was asked why we started Livvy’s Smile and why I hold events that bring me pain?

It is simple really we started Livvy’s Smile because we are so grateful.

So thankful for the wonderful memories we have stored from Livvy.

Memories that truly get us through the darkness and we just want to give that light to other families.

On Saturday we created those special memories full of chocolate eclairs and cool moms.

Memories that will give us hope through the hard times.

Why do I it when it causes me pain? 

Because I can and because I have to.

I was blessed to be Livvy’s mom, to get to call this amazing girlie my daughter.

Livvy changed my life. 

The realisation that we didn’t have forever taught me to live in the here and now.

To live a life full of laughter and love.

 

So yes hosting these events will always be bittersweet.

I’m sure I will always return home and cry for the missing piece of my heart.

But I will never stop working hard to create memories because each moment, each memory is in honour of my beautiful daughter.

Every smile I see brings her closer.

 

Yes, I know my heart will always ache,

Grief is relentless.

Like a snake it slowly twists around your heart until you cannot breathe.

Your body craves for one more breathe, one more moment.

So as the tears fall I know they do so in honour.

Each teardrop is formed in everlasting love.

Livvy is part of who I am and who I always will be.

Livvy’s Smile is testimony to eternal love. 

IMG_0004livvy2

Would It change what I believe? 

As I placed my lottery this weekend I was wondering about what I would do if I won the jackpot. A dream i’m sure we all have had at one time or another. I was wondering if being a millionaire would change my political view point. 

It’s easy I guess to say tax the wealthy when you are poor. Would my view be the same if I was one of the elite?

I didn’t have to think about it that long because I truly think my answer would be no.

I don’t think my viewpoint would change.

You see no amount of money can replace my compassion or my empathy.

But most of all money couldn’t replace my need to feel part of something.

You see we have all been sold the lie that being individualistic is the only way to live. To only think about oneself and our own wants and needs. But this only leads to one thing loneliness. 

The consumerism lie that things can make you happy has been pushed down our throats way to long.

Yet the truth is far from it. 

The newest model phone can be fun, but will it hug you close as you fall asleep?

That gorgeous designer handbag will look good on your arm but will it laugh out loud at your stupid jokes or wipe away your tears when you are sad?

Community and relationships are the greatest of things and money cannot buy them. 

Having money won’t stop me loving on children who have no place to call home.

Stop me fighting for services and support for my friends who are either disabled or raising disabled children.

Having a full bank account will not stop me encouraging those who need support or guidance. 

I’m not going to lie and say winning the lottery wouldn’t be amazing. My adapted home on a farm depends on it. 

Yet whilst the money would make life easier it wouldn’t make me complete.

It’s my, family, friends and passions that do this. 

   

Lets play on National Children’s Day

Play, that thing we assume all children do.

But do we realise how important it is to our children’s development?

  • Play increases self-esteem and self respect.
  • Improves physical and mental health.
  • Extends their social skills, teaches turn taking and patience.
  • Encourages imagination and creativity
  • Offers opportunities and for children of abilities and cultures to play together.

 

Today is National Children’s Day

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Let’s celebrate our children and make today one of play.

 

The crazy bunch of people I get to call my friends.

“I’m tired of friendships mom” words I wasn’t expecting to hear from my 14 year old daughter. I mean giving up on friendship at 14 seriously I think I was at least in my twenties before I felt this way.

My daughter and I are similar we tend to lay our hearts on the line a lot quicker than most. We have so much hope and often find ourselves a little shell shocked from life, from people.

Our hearts can be a little battered.

Friendship is a seriously strange thing, it can bring so much joy but can also turn you upside down and inside out.

My life has been blessed by friendship but also my heart has been broken by it too.

I hate watching my daughter walk this pathway, watching her turn herself in circles.  I am shocked at how cruel we can be to each other. How words can be flung about without any reproach.

I hope that one day my daughter finds the friends she deserves, those that will cherish her tender heart.

I know I am so grateful for my friends, the people that surround me in my life today. My friends keep me sane, they drag me out of my moments of darkness, they challenge me to be the best that I can be.

I love that I get to surround myself with friends who share my passions, ones that are willing to stand up for others. Fight for disability rights, free speech, equality and to challenge and change political policies.

I am honoured that I share my life with mothers and fathers of children with special needs, parents caring for their children with compassion, empathy and kindness.

With foster parents, adoptive parents who open their homes and hearts to children in need.

Recently I have found myself building friendships with amazing women who are pro active in the body positive movement, woman who are encouraging  other woman to love their bodies and celebrate who they are.

Friendships are ever evolving, some friends are there for a lifetime some for just a moment.

Yet for however long your friendship lasts its special, it changes you, makes a mark on your life,

So today I’m taking time to celebrate my friendships and to say thank you to the crazy bunch of people I get to call my friends.

I truly love you all.  xxx

 

Friends