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. 

   

So it’s October

So today is the start of October and to me that also means the start of Rett Syndrome awareness month.

This is a month that I work like to crazy to let everyone know about the devastating condition Rett Syndrome.

I have to confess I find Rett Syndrome awareness month hard.

Everywhere I go I am reminded of the condition that stole my daughter from me.

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I see the photos, the blog posts and infographics and to be completely truthful I want to scream.

I know this is wrong of me but as much as I want to raise awareness I also want to hide from all that is Rett syndrome.

But I can’t and I won’t.

I may have lost my beautiful girlie to this awful disease but I do not want my friends to lose theirs.

I want everyone to know about Rett Syndrome.

I need everyone to know what amazing strides are being made in research.

I must make everyone know how much fundraising is needed to help fund research and to also help support those effected by the syndrome.

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So self pity aside October is Rett Syndrome month and I will be doing my best to let you all know that this condition is out there.

What it is?

Debilitating neurological (movement) disorder that predominantly affects females.

Baby girls are born “normal” but begin to lose acquired skills between the ages of 1-3 years old.

Caused by a single gene mutation that leads to underproduction of an important brain protein.

The leading genetic cause of severe impairment in girls – most cannot speak, walk or use their hands.

Despite their physical disabilities, girls with Rett Syndrome are believed to be functioning mentally at a much higher level than previously thought.

As prevalent as Cystic Fibrosis, ALS and Huntington’s.

Who it affects…

Usually affects girls from 6 to 24 months leading to a devastating loss of developed skills.

That every 90 minutes another little girl is born with Rett Syndrome

And that the greatest news is that….

Rett Syndrome is a potentially REVERSIBLE disorder. Research has proven once protein levels are back to normal levels, symptoms subside.

Did you get all that?

Outside of the Scientific community Rett Syndrome is still relatively unknown. Yet Rett Syndrome is a leading genetic cause of severe disability in females.

This is why we need to raise awareness.

People need to know more about Rett Syndrome.

They need to know that research into this condition has already shown the potential to help unlock other neurological conditions including Alzheimer’s and Parkinson’s.

What you also really need to know is that besides all these devastating symptoms what Rett Syndrome does not take away is the spirit of the girls who suffer from this condition.

Olivia was the strongest most determined girl you would meet. Although Rett Syndrome took away her voice it didn’t take away her desire to communicate. Her eyes became the window to her soul.

Olivia was so mischievous and so very loving her life was about love and laughter.

This is what we have to remember that behind the list of conditions there are girls.

Girls that want what we all desire.

To live life to the full.

To live a life not suffering from epilepsy, movement disorders, breathing abnormalities and so much more.

Help me make this happen.

Help me raise awareness of Rett Syndrome.

I hate Rett Syndrome with a vengeance but I love those girls fighting it everyday.

Help me make their future brighter.

More can be found out about this condition on the websites.

Cure Rett
Reverse Rett….
Girl Power 2 Cure

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Please share this post.

What is this world coming to?

I honestly believed that I couldn’t be shocked by the news anymore. That i had truly seen the most horrific things that had gone on in this world.

So imagine my horror when I read this news headline.

Care assistants admit abusing brain damaged patient. (please only click this link if you are prepared for what you see. I know it made me physically sick.

How can this happen?

I know many of my friends with disabled children are hurting right now. They are scared that one day they may not be able to care for their child. This will mean that they will have to be cared for in a facility like this one.

I only hope and pray that this is an isolated incident and that most of the caring profession are as they job title describes carers.

 

 

 

We are all in this together.

Throughout our lives we find ourselves becoming parts of communities, part of set groups or to use the sociology term subcultures.

Be it a group of work colleagues , all the technicians together. Be it a parenting group, parents of two year olds please hang here. We come together through shared experiences or passions.

We are never really ever only in one group, different aspects of our lives play into different groups.

Myself I belong to many, parents of teenagers, parents of 12 year olds, foster parents and also the one group I really wish I never had to join parents who have lost a child.

All these groups I am proud to be part of but one thats on my heart right now is parents of children with special needs, especially as I like to call them my Special Kids in the UK family.

This is one amazing group, you find us  in all shapes and sizes . We have varying beliefs and certainly different personalities. Our children have different conditions even with the same diagnoses or in some cases no diagnoses.

So what makes this group rather special?

We can bitch and moan as good as it gets but when one of us is hurting we stand along side them.

If you were my friend on Facebook today you would see that my news feed is full of pictures of Minnie mouse. These pictures are our way of showing one of our members that we stand beside her. Most us wish that we could literally be standing beside her tomorrow as she lays to rest her beautiful son. We wish we could swap our virtual hugs for real squeezy ones.

Thinking of you xxx
Thinking of you xxx

But we cannot,

Life, children and distance keeps us separated. Yet nothing will stop us thinking and sending our love and wishes in support, compassion and remembrance tomorrow.

This same group right now are also sending prayers and healing to children in hospital. Sending strength to parents who are utterly exhausted. Families that are at breaking point.

At times we cannot offer more than the words “I’m here”  but believe me over the years those words have meant a great deal.

I am blessed to be a member of this group. For over the last 8 years they have been my strength. I have made friends whose friendship goes over and beyond the fact that we are special needs parents.

When I lost Livvy one of the crazy worries I had in my head was that I would lose these friends. How wrong was I, our children may have been what introduced us but they aren’t what bind us.

Maybe our binds are forged in exhaustion, endless battles with professionals and way to many late nights. Maybe they were joined in the many melt downs and medical jargon and repetitive forms.

Who knows, who cares, regardless of the why there is simply the just is.

I am so thankful to be part of this unique subculture to know and to share my life with these crazy people. At times I am not sure I would have coped without one or many of the group members.

Together we have faced the worst.

I am so grateful that one day many years ago I stumbled upon a small yahoo group. I have watched in grow over the last 8 years watched the number of members change from the tens into the thousands.

Being a member of this group means that although we may be facing uncertain futures with our children. We are never facing them alone.

We are all in this together.

 

Not today thank you

I am a very vocal advocate for children with special needs and different conditions. Obviously the main being Rett syndrome.

Anyway for most days you will find me happily chatting about what struggles having a child with disabilities can bring and also how to help said child reach their full potential.

It is a common conversation topic and I seriously don’t mind.

Well I didn’t till yesterday, then I had enough.

It may have been an overload from a training course, it may have been the left over tiredness from illness.

Regardless the reason I had just had enough.

I didn’t want to understand.

I didn’t want to have to inform.

I didn’t want to advocate.

I just wanted to be.

I hate that some children’s lives are the topic of such conversations. Working out the right medications and therapies to get a fulfilling healthy life.

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I want to be talking about girlfriends and boyfriends and not seizures or physio.

I want my child to walk to school not have to go in his wheelchair on a bus.

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I want to hear about his day from him and not have to read his diary.

I know life is life and nothing will change this.

I also know that I love my job and raising a child with special needs.

But sometimes

Somedays

I just want to say…

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Star Trek makes sense

I’m told its my eyes that tell my story.

A few days ago I had to have my photo took for identity purposes. You know the one where you can not smile or pull funny faces.

I struggled with looking at this photo not just because i hate having photos took of myself but because I couldn’t hide behind my smile. My facade to the world.

This photo rather shocked me as I looked haunted.

A little lost.

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This led to an afternoon of self analysing not something I would really recommend. It can totally mess with your mind.

You see thinking never really does me any favours.

Well where was I?

Oh that’s right my haunted look.

It was as if my life had left a physical imprint on my soul and of course the eyes being the windows to the soul it was there for all to see.

I realised my identity has changed so much over the years. Not surface things like fashion, hairstyle etc but the roles I play in life.

I’m a wife, I’m a mother

But I’ve also been a mother of a disabled child.

I’ve been the grieving mom of the said disabled child.

I am now a foster carer to a disabled child , a foster mom.

Different roles at different times yet which one left the haunting.

It doesn’t really need a answer does it.

Losing a child is so strange it’s as if life moves forward but a part of you is left in the past.

Haunting the memories.

It’s as if you hold on to the then rather than live in the now without them.

I watched my first Star Trek movie the other night and they were talking about alternative realities and that made sense in a strange way.

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A part of me is still in pre November 7th 2008.

It’s not about non acceptance it’s about holding them close and never letting go.

I believe all of us have a haunting.

A moment in time which we can never let go.

A time in your life which shaped who you are today.

I see my life as a jigsaw I was born complete but through life I have lost or left pieces behind in different places and at different times. I won’t be complete again until eternity.

But that’s ok.

I think this is what makes us human the ability to connect to form bonds.

The courage to give away pieces of ourselves.

So a jigsaw am I.

Or as my husband says missing a few pieces ha ha.

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An inspirational night

On Saturday I attended a spring ball
held at the Queens hotel in Leeds a beautiful and very regal hotel. With stunning architecture and incredible rooms.
The reason I attended this ball was to help raise funds for charities that I am passionate to support, Special kids in the UK being one of them.

Yet this ball was extra special as it honoured a beautiful little girl Lucy Mai.

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Four years ago last november Dean and Annie and my husband and I faced the worst thing that could ever happen to a parent. The loss of a child. Within a week of each other we lost Livvy and they lost Lucy Mai.

Within a week our hearts were forever broken.

We began on the journey nobody ever wishes to start.

The year after our loss Dean and Alan invited Alan and I to the Lucy Mai’s Spring Ball. To join them as they raise funds in celebration of the life and the gift of Lucy Mai.

Now I can tell you that we didn’t attend due to money issues, child care etc but the truth is we didn’t have the strength.

You see to be part of the world of special needs when you have a child with disabilities is hard.

Yet to stay part of the world when your connection to it is lost is truly courageous.

And that is what Dean and Annie are , truly courageous.

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So four years on we finally found the strength to attend.

We were there on Saturday raising funds in memory of Lucy Mai. A beautiful young girl who was a gift to her parents and to all that knew her.

We there to raise funds to support charities that are lifelines to parents with children with disabilities. Each in its own way giving strength to many on this hard journey.

I know that Dean and Annie would tell you that they don’t do this all alone. That they have an amazing team behind them and yes to that team I say thank you.

But to Dean and Annie I want to say this.

“I’m sure Lucy Mai is looking down on you both with such pride.

You are a amazing couple who have faced heartache with such grace and courage.

I think I write on behalf of many when I say thank you for all that you do.

But I write on a personal level when I say that you both rock and that you both are inspirational”

Saturday night was a memorable night in so many ways.

I’m praying the night raised lots of money.

I’m also praying Dean and Annie realise how truly amazing they are.