Thank you for making me a mom.

I remember the days when your hands fitted in mine. When your legs would wrap around me as I lifted you in my arms. Holding on to mommy, never letting go. 

The evenings we spend reading, each one of you slowly working the words out until letters became sentences, lines became paragraphs. Each growing and learning in your own unique wonderful way. 

I remember our random danceathons or when you all decided to play make up. 

I so remember your siblings arguments it was also someone’s else’s fault. You all raged against each other promising never to speak again only moments later you filled the house with laughter and each other’s arms with cuddles. 

I remember your kindness the way you all cared for your sister. Nothing was to much, holding her hand when she was seizuring to endless hours at her hospital bed. 

I remember your heartache, your brokenness at her loss. 

I truly remember your bravery each one of you choosing to reach out and love on others when it would have been so easier to stay closed and safe.

I remember how amazing my girls are. 

I know how incredible my girls are. 

I remember how blessed I felt when each one of you were born and I know how blessed I am today.

My girls you aren’t babies anymore, you are strong incredible beautiful women.

  
I am so proud of all that you have become and so excited for what the future holds for you all. 
I admire your strengths, your individuality.

All moving forward in your own direction, finding yourselves in this crazy world.

You are my heart, my greatest achievement. 

Kennedy, Eden, Brodie never forget how much I love you.

Olivia you are the missing piece of my heart. One day we will be together again.

To my beautiful incredible boys, you may not have been born from my body but you were certainly born in my heart. Thank you for allowing me to love you. 

Mother’s Day is special we celebrate our moms and all they do. 

I want to celebrate those that made me complete. 

Made me a mother.

My beautiful children

Let’s end October with a bang. 

For the last 23 days I have asked you to join with me and support my #nomoreemptyarms campaign. Asked you to upload an image with you and your loved ones with the hashtag #nomoreemptyarms. All this in hope that we could raise a discussion from the hashtag about Rett Syndrome, generating awareness and understanding is what I was hoping and praying for.
  

You all have supported me incredibly, and again I have been shocked at the momentum that the hashtag has created. My heart has been blessed by the comments, by the questions and by people saying “they didn’t know what Rett syndrome was but do now”. It’s been truly awesome. But now as we reach the last 8 days of October and the final days of the Rett Syndrome awareness month I’m going to ask you to do something more for me.

I’m going to ask you to donate £5 to Reverse Rett and do so in honour of my empty arms, my Livvy. 

  
I want you to join me in fighting against Rett Syndrome and shouting out loud #nomoreemptyarms

  

£5 may not seem a lot, a price of a coffee, a magazine but in fighting against Rett syndrome every penny counts. 

So please make a donation now in honour of my Livvy and for all the parents out there whose arms are now empty because of Rett Syndrome. Then tweet me, Facebook me or just let the world know that you have donated and that they can too. Help share the fundraising link far and wide.

I’ve just donated £5 to Reverse Rett because I want to make sure that there are #nomoreemptyarms you can to. https://www.justgiving.com/Nomoreemptyarms

Please do this for me in honour of my Livvy, do this for all the children fighting against Rett Syndrome today and please do this so that we can be fight together so that no other parent has to lose their child to Rett Syndrome. 

The cure is within our reach, make our hopes a reality. 
Please visit my just giving page. 

  
Please donate here today 

Sending the kids to the circus 

Ok I’m fuming right now, last night on my Facebook page I shared this 
  
Photo Credit : Sue Fitzmaurice 

About 30 minutes after I posted I received an email telling me I should be ashamed. It seems that after losing a child I should never wish any harm to my others. I should know how special they are.

Now as you can see from the picture I didn’t wish any harm to my kids and maybe they may have enjoyed the circus.

But really !!!

I love my children with all my heart but I’m being totally honest when I say at times they completely drive me mad. 

As for saying I should know better, what the f*ck.

Livvy didn’t die because I threatened to send her off to the circus. She died because of a shitty neurological disorder named Rett Syndrome. 

As for my other three girls I am parenting them the way I feel best. At times like most moms I feel like I’ve messed up. I shout, scream and often lose my patience. 

Losing Livvy didn’t turn me into the perfect parent.

In fact what it did teach me was that I had to treat my girls like normal. I couldn’t wrap them In cotton wool and be scared of anything happening to them. It wasn’t easy the loss of a child does make you over protective and frightened of everything. But raising them in a bubble wouldn’t be fair to them. 

They have a life to live to the full. The whole world to explore, people to meet, memories to make.

And right now if that means a trip with the circus, so be it. 😜

Always

I am a mom that had to bury a child.

Yes I am that mom.

But I’m also a mom who was so very blessed.

I thank God every day that I got to be Olivia’s mom.

That I got to walk her journey with her.

Caring for this beautiful girl changed my life.

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I learned so much.

I learned about true love.

 

It’s not easy losing a child.

Wow what an understatement.

It’s so not easy 

I always will have a part of me missing.

Yet I would do it all again.

It a heartbeat.

 

Walk those hospital corridors

images

Wait those endless hours for appointments

Fill those never ending prescriptions.

 

When you become a mother you take on many roles.

Carer,

Protector,

Teacher

 

When you have a special needs child these roles extend

 

Nurse,

Chemist,

Advocate

Fighter 

 

At times it feels like each day holds a new battle.

And yes we do get battle weary

But our children are always worth the fight.

always

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.

 

I am not a burden

I sat watching the Kerry Katona documentary last night about her journey through life and her bipolar disorder.

I cannot put into words how much it affected me. It wasn’t the bipolar disorder that tore at my heart even though my heart aches for those that suffer with this condition.

No what got me was her feelings regarding her childhood.

Unwanted

Rejected

A burden.

These feelings have left her with a great desire to love and to feel loved.

That is simply my heart.

Thankfully I didn’t have a childhood like Kerry’s but due to divorce and miscommunication and a few other things I never felt wanted.

I never felt good enough.

Now as a 37 year old woman I am still coming to terms with this.

I have craved affection all my life and sometimes made grave mistakes when searching for it in the wrong places. I was erratic as a teenager swinging from the possessive girlfriend to the free spirited couldn’t give a damn wild child. I self medicated with alcohol and drugs just to feel the freedom of not worrying or caring.

It seemed as if i wanted to be wild when all i really wanted was to find home. Trying too hard to be what I believed others wanted me to be.

Still

I am one of the lucky ones,

I got to change my story.

I fell in love with a man who loved me right back crazy bits and all. Even when I pushed away he held on. But it has still taken many years and many late open hearted conversations to get to a place where I can but things in perspective.

I was loved,

Both my parents cared for me but the separation of them led to miscommunication that thankfully my adult years have repaired. The father I never felt good enough for is now my best friend. He is the best Grandad my kids could every ask for and I am so very grateful that I get to call him Dad,

But it is amazing how those emotions we feel as children can and do effect the rest of our life.

I drive my children mad, from the moment they were born they knew they were my everything and I simply hug them to death.

I want for them to never feel unloved or a burden.

I want them to go out confidently in this world knowing that I am behind them all the time.

I am in their corner

I am their fan base.

They are my heart.

 

Now I also want this for myself to.

I want to feel confident when making new friends.

To believe that I am worthy of love.

Childhood is one of the shortest periods in your life but it is one or maybe the most important when dealing with emotional growth.

I believe every child needs to know they are loved.

Maybe this is why I am a foster carer I don’t know.

What I do know is that everyday is an opportunity to let those dearest to you know how very special they are.

I want to break the stereotype of the stiff Brit and become an open and affectionate country.

So do me a favour guys,

If you are parent make sure you children know that they are loved. Praise them more than you scold them.

If you are in a relationship tell you partner how much you love them. Tell them what you find special about them.

Call your parents and remind them how awesome they are.

Ask your work colleague if there is anything you can do to help them.

Smile at a stranger.

Thank the waitress for your order.

Lets make this world one of love, it may sound crazy but I honestly believe a hug can save a life.

So lets get saving lives.

A hug revolution.

hugskisses

 

* I just want to add that I don’t for one second believe a hug could cure Bipolar this isn’t what I’m writing about. If you feel that you are suffering with this illness please seek help and don’t suffer in silence. The charity MIND is a fantastic organisation and are always willing to help.

Keeping my girls safe.

My girls are growing up and as much as I don’t like it I am finding it to be something I am having to accept.

Yet with their older years I am also finding that they want to be out and about more without me or the dad hanging around. While I am happy that they are social and living life I do worry constantly about their safety making sure they have a fully charged phone before they leave and always knowing the general idea of their plans.

Even though I still worry so when I received an email regarding a new safety app I was rather excited.

PanicMe is an easy to use app which turns your smartphone into a personal safety device. It is something that you can download to your own and your child’s phone quite easily.

How it Works

Developed in consultation with local police forces, PanicMe allows you to create a personalised response network of your friends and family who will be contacted when a panic alert is triggered.  A traffic light system (red, amber, green) offers three panic options depending on the urgency of the event and up to 30 contacts from your phone can be selected for each panic option.

  • Red Alert: high risk situation.  You are in serious trouble and danger is imminent.  You may be in fear of being attacked, abducted or seriously ill and urgent assistance is required.
  • Amber Alert: medium risk situation.  You are in serious trouble and may come to harm if help doesn’t come within half an hour to an hour.
  • Green Alert: low risk situation. You may be lost, separated from your group or your car has broken down and you require help within an hour or two.

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The app features GPRS tracking (TrackMe) which shows your panic response network your exact location and also indicates the location of your chosen contacts making it easy to identify the nearest potential responders.  Data capture is activated once an alert has been triggered logging your location as well as any available Bluetooth connections.

When an alarm is raised, contacts are notified by push messages to their own smartphone at regular intervals, which vary depending on the chosen panic option, until the alarm is deactivated. 

David Lindley QPM, former Deputy Chief Constable commented: ‘‘There may be any number of reasons and circumstances why people feel afraid or vulnerable.  Apps like PanicMe offer a simple and practical way to help anyone who feels unsafe or vulnerable. Families and friends can be confident that they will be quickly contacted if the one they love feels vulnerable or needs help.”

 The basic version of the app, PanicMe Lite, is free to download and includes the green panic option only.  The full version, PanicMe Pro, includes all features including TrackMe and costs £14.99 annually.  Both apps are available for iPhone, Android and Windows smartphones.  For more information visit www.panicme.com or like us on Facebook

I am rather excited about this app, it will allow me to feel a little more confident of my girls safety when they are out and about. It works for them as like most teenagers they are never without their smart phones.

Well worth taking a look at, isn’t it. It will certainly help bring me a little more peace of mind.

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KEEPING MY GIRLS SAFE