Tag Archives: special needs

My favourite photo

This was taken in May this year and it was the first photograph of Daniel without his NG tube. It isn’t my favourite because it’s the first without his NG but because of my relief of seeing that smile after surgery.

 

There is nothing worse that handing your child over to surgeons and theatre staff, you have to trust them with your heart. This gastrostomy surgery was the first we had faced with Daniel and nothing could have prepared me for the fear I felt as I left the theatre, my legs literally felt like lead. I could barely breathe for the hours he was in down.

So this photo is my moment, the moment I could breathe again. 

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.

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. 

How could I have forgotten? 

Yesterday the world just didn’t make sense. My heart and my head just couldn’t stay on the same page. I screamed, I cried. I was angry, I was sad and for a while I didn’t know why. 

Why was this day so hard? 

Then I caught the date on my phone December 3rd, 

December 3rd 

As I read that number it hid home with a gigantic bang.

How could I have not realised, how could I have not remembered? 

What kind of mother am I ?

Forgetting the day I buried my daughter. 

If I close my eyes I can recall that December day. It was cold but yet the sun lite up the winter sky, warm rays dancing on the icy floor. 

Frost sparkling like a carpet of diamonds fit for a princess, my princess. 

You know It’s not in any parenting books, or  on any websites. There are no handbooks on how to bury your child.

You wander through it all in daze, making decisions you have no desire to make. The colour of the casket, the silk that lines it. What does she wear? Oh the irony of it all, does it actually really matter? 

Yet matter it did, from the brand new cardigan that Nanna travelled to fetch to the choosing of her special toys, it all mattered, it mattered desperately.

I wanted it perfect, I needed it to be perfect.

It was all I could do, all I had left to do. 

I don’t really remember the words that was spoken or even the memories we shared.

All I really remember is the weight, the weight that consumed me, my feet feeling lead lined not wanting to move. To leave, to leave my beautiful girl behind. 

I kept on at myself “she isn’t there” “she has already gone”. Yet in that casket laid my last physical connection with my daughter and everyone is telling me I have to move, I have to leave. 

I held on tight to my youngest hands as I left that chapel, scared to let her or her sisters out of my sight. Wanting to hold on tight to them and never ever let go. 

I was empty, I was lost. 

Walking through the pleasantries, shared moments, warm hugs. 

Yet nothing was ever going to be the same again. 

I would never be whole again. 

I left part of my heart behind in December 3rd 2008 and whilst the brokenness has started to heal I will also have a missing piece. 

A beautiful blond wild haired missing piece. 

My girl, my Livvy,

Forever in my heart, forever my daughter. 

Holiday nightmare 

Yesterday was a day that was a mixture of joy and sadness, of chaos and calm. 

Yesterday was supposed to be the start of a wonderful few days of family quality holiday time in Skegness.

We woke all excited,I’m sure the big boy was ready to explode as he was so looking forward to his holiday. We woke, packed the car and trailer, you don’t travel light with children with complex needs and off we went. Four hours later we arrived at the caravan we were meant to be staying in to find it already occupied. A family situated and enjoying their own holiday.

Now as you can imagine we were gutted, the holiday had been a gift to us from a charity and somehow there had been a mixup and now we were over a 150 miles from home with two complex children and one annoying teenager and we were now officially holiday homeless. 

To say I felt sick was an understatement, the boys were getting distressed, hungry and tired and generally fed up after being in the car for 4 hours. Alan my husband was tired from driving and myself let’s just say there was a few tears.

The children had been so excited especially my big boy he had been constantly signing caravan for the last few days, he couldn’t grasp why we were waiting outside a caravan and not going in, to be honest nor could I.

I’m not going to name the charity here as that wouldn’t be fair as it was a genuine mistake and they were genuinely upset. They do amazing things for families with disabled children and I don’t want this cock up to take from that but yesterday I was at my wits end. The idea of having to tell my children that we had to return home without a holiday was so upsetting, I could barely breathe for the sadness.

I took to Twitter and Facebook to share our plight in hope that someone could help, had some ideas etc. We had been calling local caravan parks to see if anyone had any availability but as it was the first week of the school holidays everywhere was booked solid. 

A few friends searched the Internet for me trying to find us somewhere to stay and we had just given up and was preparing to tell the children, “sorry we have to go home” when my friend messaged me that 45 minutes down from where we were a Park Resorts had limited availability.

One phone call later we were on our way.

I can’t tell you how grateful I am to friends for searching the web for me, just reaching out to support us when to be honest I was close to falling apart. 

We are now curled up in a lovely caravan on the Sunny Dale site of park resorts and it’s wonderful .


Yes it’s going to be a little different than we planned the holiday to be. For example we hadn’t saved the money for the caravan as we didn’t think we had to after having a midweek break gifted but we are here and whilst we are a few hundred pounds lighter we are determined to make the most of the next few days. The boys are happy and besides having no phone signal Brodie is happy as well. 

The caravan here at Park Resorts is beautiful, our welcome to the site was lovely. So far so good, we are excited to have a few wonderful days just making memories and spending quality time together as a family.

Right now I’m just trying to breathe again, I cannot say yesterday was the worse day of my life, because as you know after losing a child the worst day will always be then, but yesterday was truly horrible. I’m still emotional thinking about it. Yet right now I have three children counting on me to make this holiday fun and special, so that’s what I’m going to do. 

We are now on an amazing site ( thank you Park Resorts and it a lovely caravan. We are also so excited to visit the local seal sanctuary and explore what else this beautiful area has to offer.

Holidays don’t always need you to spend lots of money they just need a little inspiration and a lot of laughter. 

So here’s to making some memories. 

A beautiful place 

This week I’ve spent my first night in our local Acorn’s children’s hospice, giving the staff chance to get to know my little one whilst I’m on hand and I cannot believe how amazing this place is. 

When Livvy was still with us the word hospice filled me with fear. As far as I was concerned a hospice was where children went to die. 

I was so wrong it’s a place where children live.

In the last 24 hours I have seen so much laughter, 

so much love 

so much life. 

Children with smiles that light up a room, laughter than echoes through the corridors.

It’s a truly wonderful place , full of staff that really care for the children and for who nothing is too much trouble. 

I cannot believe how wrong I was. 

Yes it’s a place that cares for severely disabled children but it’s not the disabilities that are seen here it’s the characters, the spirits. Here in this special place children are simply that children.

It’s a welcome relief for parents knowing they have a place that their children can go and be cared for whilst they get their much needed respite. 

It’s a magical place where children can escape the boring parents have fun and laughter with friends.

Honestly it’s beautiful.

The support that families receive is second to none. I personally know of two families who walked the painful journey of losing their child with Acorns by their side. Of course it doesn’t stop the pain but having someone who understands is priceless. 

I have really enjoyed my stay here and I know little one has too. We are looking forward to more visits and the making of more memories. 

Please take a look at what amazing things Acorns achieve. 
  
The children and families they support

Acorns has helped over 2,470 children and their families since it was established in 1988

Last year2, Acorns supported over 760 children and more than 980 families, including those who are bereaved:

Acorns is currently supporting:

Over 250 children and around 340 families at Acorns in Birmingham3

Over 200 children and over 280 families at Acorns in the Black Country3

Over 190 children and more 250 families at Acorns for the Three Counties3

Read more about how amazing they are here

Please take time today to check out your local children’s hospice and maybe even consider making 2016 the year you decide to fundraise for them. Every penny raised in a penny towards keeping families together and children happy. The services and support is so needed.

For more information on Acorns and how you could support them visit here…

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

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.