A wonderful resource 

Having a child with complex needs means I often get to spend more time that I would like in hospital. In fact over the years my local hospital has felt more like home than my actual one. Livvy spend weeks at a time causing chaos on the children ward. I have some incredible memories of my time on ward some which are painful but others full of laughter. We were so lucky to be surrounded by first class paediatricians and nurses and not forgetting the support workers. They all made what was often some of the scariest times of life less fearful. 

Medicines and treatment are only one part of the solution when it comes to getting children well. They need a holistic environment that relaxes and reassures them allowing them to heal. 

This Is why I was so happy to be at yesterdays official opening of the new Paediatric sensory room on Ward 21 at the Walsall Manor Hospital by the Deputy Mayor.

I actually didn’t spend anytime on ward 21 with Livvy, she didn’t hang around long enough to visit on the new children’s wards. But the old Canterbury Ward was a place we spend many a week. A place where my youngest Brodie spend many a hour in the playroom whilst the nurses cared for her sister. She spend hours being occupied by the wonderful play support staff whose passion for the children they support is evident in all that they do.

Conversations spoken 15 years ago of wishes for a fully functioning sensory room today got to come true and I honestly don’t think you could have seen happier staff than those there today. Such well deserved pride.

The sensory room is perfect it’s going to be a place where children can relax and recover. A place where children with extra needs or not can escape the confines of the ward to a little place of harmony. Healing the soul as the doctors heal the body. 

I can personally attest to this as thanks to my visit on ward with my little man a few weeks ago we got to experience first hand what a wonderful resource this sensory room will be. He absolutely loved it. What’s even more special is the fact that the ward now also have a portable sensory unit which means that this resource can be brought to the beds of those that cannot visit the room. Those hooked up to machines or oxygen, they too can have a sensory experience at their bedside.

At the opening yesterday I was joined by a family that have walked life’s journey with me. A family who I met actually on the old children’s ward, a family who have become my family. Livvy and their handsome Ryan met on the children wards over 13 years ago and became the closest of friends. We share so many memories of them together, memories that light up our lives and fill us with joy when we recap on them. They simply were double trouble, but both of them were such great gifts to our lives. 

It was so lovely to be there yesterday and imagine our two in that room. Climbing over the equipment, loving all the lights. Both really benefitting from this amazing resource. Whilst it was nice to be lost in our memories for a while just watching the children play yesterday warmed our hearts. This sensory room is going to bring much joy to this current generation of children and hopefully many more. I know we will personally love using it if ever little man decides to visit again (please not for a while). It truly is a special place and well done to all those that tirelessly campaigned for such a resource and a massive thank you to all those that donated and fundraised towards it all.

Of course we don’t want to stop here, Walsall Paediatric unit still have a lot more that they would like in place to offer the most holistic environment for the poorly children that crosses their door. Their next wish is to revamp the waiting area in the paediatric assessment unit. A place where children are often unwell and frightened. The first point of course on their journey or stay. How incredible would in be to have a interactive waiting area that could occupy children as well as distracting their fear. I know this would be so amazing for both the children and their parents.

If you would like to support this next venture please get In touch with Georgie the fundraiser at Walsall Manor give her a call on 01922 656643 or email her @georgie.westley@walsallhealthcare.nhs.uk let her know that this is the project you wish to support. Please tell her I sent you so that she knows where you heard about it. 

It is so hard when children are ill, unlike adults they don’t often understand why and what’s happening to them. This is why the environment they are treated in matters so much. This paediatric sensory room is going to be a wonderful resource in reducing this fear allowing children the space they need to aid their healing. So thank you Walsall Manor Paediatric unit for all you have done and for all you do in keeping our children well. 

I’m on the T.V

So a few weeks ago I blogged about my youngest daughter winning the Mayor Civic award  due to this amazing achievement Brodie and I were asked into our local tv station to share more about the award and Livvy.

Take a look at our interview here.

Be kind, I love to talk and Brodie bless her got stage fright.

 

 

If you want to learn more about Livvy’s Smile check out our website Livvy’s Smile and if you are interested in joining us to celebrate Livvy’s 16th Check out the facebook event here…

The crazy bunch of people I love.

So after I  had published my countdown post to Special Kids in the UK I found myself re-reading it from the perspective of someone who didn’t know the people I was writing about.

 

I wondered if I had given you the impression of a camp that was about disability and only disability.

 

Now after spending a crazy wonderful week there I want more than anything to give you a little more insight into who we really are.

 

Yes Special Kids is a charity which was formed by parents with children with disabilities for the use and support of other parents in the same situation.

 

It is true that this is the life we live, but it isn’t all we are.

 

We are fun crazy people that have somehow found ourselves in the world of disability.

 

Yet we aren’t just parents and carers of children of disabilities and our children are far more than just syndromes and conditions.

 

We are a diverse group of people.

 

From wine drinkers to tee-totals.

 

Drag queens to doctors.

 

We are sporty, creative, energetic,caring, imaginative and eccentric.

 

We have parents with full time careers and we have stay at home parents (a full time job in it’s own right.)

 

We are each unique and that’s why it works.

 

We are different but united.

 

Please don’t imagine this camp as a group of people sitting around a camp fire full of woe me for life.

 

You will find us sitting around that said fire laughing at the antics of our young adults, roasting marshmallows chatting into the small hours.

 

You will find us dressing up in weird and wonderful ways, wheelchairs transforming into race cars and families transforming back into the stone ages.

speshfest 2014(2)

Sharing life with others that understand that really get it.

 

Life is about living and the people that I camp with understand that more than most.

 

Special kids in the UK camp is about support and compassion but mostly it’s about friendship and laughter.

 

I am so blessed that I get to call this crazy bunch of people my friends.

speshfest 2014

 

So thankful that one day about 9 years ago i came across Special Kids in the UK.

 

I love these guys xxx

 

*Credit for the photographs go to members of Special kids xxx

 

My A-Z of Special Kids in the UK camp.

The last few days I have been having a fantastic time at Special Kids In the UK camp.

I wasn’t sure how to describe my time away until I wandered past a group of campers playing the A-Z game in a rather unique way.

So here is my time at camp from A-Z.

 

A – Amazing

B –  Beer o’clock

C –  Caring

D –  Drag queens

E-  Enjoyment

F-  Friendship

G –  Games

H-  Hugs

I-  Informative

J-  Jumping

K-  Karaoke

L- Livvy & Lucy- Mai

M-  Memories

N- New friends

O-Old friends

P- Pig roast

Q- Quality

R- Restore

S- Special

T- Tea tent

U- Ugly bug ball

V- Volunteers

W- Wobbly walkers

X- X-citing

Y- Young & old

Z-zzzzzzzzzzzzz

 

Is it my fault my child is disabled?

When my late daughter was born I contracted MRSA and was so very ill. I was trapped in hospital in isolation not allowed to see my children including my precious newborn.

 

I blamed myself for such a long time as I knew how important those first days of bonding were.

 

When Livvy’s regression started I was told so many things including “I have to accept that not all kids are the same and that I should be grateful for two bright kids”. “Are you lonely and want attention” “you are neurotic” to the worst one from a doctor “I think you want there to be something wrong with your child”.

 

I was broken I had this child who had gone from a pleasant baby, toddler into a screaming child

who wouldn’t even look at you.

 

The doctors eventually diagnosed global learning but I wasn’t convinced they just wouldn’t listen when I told them she used to walk, talk and engage with you. They just smiled and brushed over the subject.

 

I honestly thought I was going mad. Yes I was exhausted I had a 5, 4 and 2 year old to care for. I started to let the words of the doctors convince me I was wrong. Maybe I had missed the signs, I mean I did have my hands full.

 

I had lost my baby girl into a world that she wouldn’t let me access I was devastated. Maybe it was my fault. If only I hadn’t got ill. I hated myself and was sure I was the worst mom in the world.

 

I sat at toddlers groups watching Livvy scream when other children came close. My heart was in pieces.

 

In the end I retreated, my own world was safer.

 

Then Livvy’s seizures started. The first one scared me so much I nearly dropped her. Febrile convulsion I was told, twenty more later the doctors were confused.

 

The same doctor who had accused me of wanting to believe my child was ill was now informing me that I had a very poorly child and was looking worried.

 

Was this my fault again?

 

Life got crazy, nobody had any answers until a community paediatrician handed us the words Rett Syndrome.  A week later the neurologist confirmed it.

 

I didn’t want this diagnoses but the more I read into it I realised i wasn’t to blame.

 

I couldn’t have caused it.

 

Something inside of me changed right then as I read the research into the condition.

 

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

 

See I wasn’t wrong.

 

This gave me so much strength. I wasn’t a bad parent, I hadn’t let her down.

 

It wasn’t my fault,

 

This realisation gave me the courage to break the chain of lies that were in my head.

 

No more.

 

I was determined to do as I had been.  Being the best mom I could to my now four beautiful girls. I armed myself with knowledge to quieten those who shared their ignorance with me and believe me many still did. I don’t believe it was with malicious intent but my goodness some people do need to think before they speak.

 

The darkness began to lift and I realised that it had been the fear that her condition was my fault that was slowly eating me up inside robbing me of my joy.

 

It’s not easy when you realise your child is disabled. You question everything you did. I ate healthily when pregnant. Didn’t drink or smoke.

 

Yet somehow the comments from people and professionals had cast doubt in my mind.

 

Was it my fault that my daughter was disabled?

 

No it blooming was not.

 

It was one of those things in life that just happens it was caused by a single gene mutation that leads to underproduction of an important brain protein.

 

I couldn’t be responsible for that.

 

This knowledge set me free and the fear dispersed.

 

I was then able to live life for the gift it was.

 

Livvy emerged slowly from her own world and her mischievous spirit started to show.

 

My other daughters just grew and bloomed.

 

Life was good.

 

Then in 2008 we lost my beautiful girl.

 

As the pain tore into my soul the words “it’s your fault ” returned to mind. “You should have seen, you should have known.”

 

Thankfully, I can’t believe I’m writing this but thankfully the inquest told me otherwise. Livvy had lost her battle to a rare virus and the complications of Rett Syndrome.

 

There was nothing I or anyone could have done.

 

One thing I have learned this last few years is that even with the truth in their faces some people will believe what they want to believe.

 

Maybe it’s ignorance maybe at times it is spite.

 

I can only be responsible for my own mind and my own thoughts.

 

I was blessed to be Livvy’s mom and nothing or no one will ever take that from me.

 

 

I honestly believe the whole process of the diagnosing of children’s disabilities need to be looked at.

 

Doctors, health professionals need to listen closer to parents. We may not have the medical degree but we do know our children.

 

If doctors had listened closer to me when Livvy first went into her regression her diagnoses would have come sooner. But also I personally wouldn’t have had to face the internal pain believing it was my fault.

 

I’m sharing this today after reading my friends blog over at Autism and love. Although our journeys are very different again I see how easy you can be left believing your child’s disability is your fault.

 

The time up to Olivia’s diagnoses was so hard. Hearing words like “naughty child” or “attention seeking” leaves you feeling so very lost.

 

Health professionals need to be more aware of the impact that statements like this leave on a parent . To be aware of what they must be feeling. No one plans to walk this pathway so more support is so needed.

 

Finding out your child has a disability is so hard. You have to let go of many dreams you had for child’s future. Let go of the life you used to have.

 

But with the right help, support and friendship your life can and will be a good one.

 

My life is so different because I got to be Olivia’s mom and for that I am truly grateful.

wonderful gift

 

 

 

 

Aftershock

Yesterday I had a hospital appointment to discuss a cyst that had been found on my liver. Although my GP was sure it was nothing to worry about she couldn’t rule anything out and wanted me to see a specialist.

I was sure that it was all good but in the back of mind I was doing my normal “what ifs” in full panic mode.

My health hasn’t played fair and I was frightened this would be another knock back.

Thankfully the specialist isn’t to worried she is sending my ultrasound for a second opinion but that’s just to be thorough. Liver functions are all good and I only need to just keep my diet healthy as most of us do.

So why now after the appointment and good news am I feeling so freaked out?

My husband believes because I was pretending I wasn’t worried that the relief is actually a counter shock and that’s why I’m so emotional.

An aftershock

Sounds about right.

I guess you go through life knowing about cancer and liver disease but you just pray it’s never going to happen to you. So when a GP has to mention it you find yourself tumbling into worst case scenarios.

Yesterday my tumbling got stopped and I’m truly grateful for that.

But it has also been a good reminder that I need to take care of myself.

My healthy diet has been slipping recently due to being so busy I need to work on this. Keep to my swimming sessions and generally take better care of myself.

I was lucky this time and I won’t take that for granted.

An aftershock or a warning shock ?