Not hiding my boy away

A child breaks their leg, Mom shares image on social media and the comments that follow are full of “bless them” “oh little brave one”. A special needs parent shared their reality and the response is so very different.

Regardless of how people have viewed the coverage regarding Alfie Evans I am getting truly tired of hearing “you shouldn’t show photos like that” “who wants to see a sick child”.

It’s comments like this that makes us special needs parents feel we have to hide in the shadows. It’s ok to share a photo of a normal (I hate that description) healthy child with a broken leg but how dare you share a complex kid?

Comments like “it’s made me feel uncomfortable” are driving me crazy. I’m sorry my life is making you uncomfortable, I apologize that my child’s feeding tube makes you look away. That you feel sad that you have to think of children in situations like this.

Jog on,

Our children are gifts, if we want to share and journal every step of their journey we have the absolute right to. If we want to share our fear, pain and worries we will.

It’s comments like those written above that left me struggling alone with Livvy. It’s attitudes like this that stopped me reaching out to be supported.

It’s not happening again, I will not hide my beautiful boy from those that are sharing our journey with me. I will not allow myself to feel isolated again. As far as I’m concerned if you don’t like what you see or read, don’t follow.

I am so thankful for the community of parents whose children have complex needs here on social media. For the wide-awake club who keep me company in the endless early hours. Those that have been there that can advise or encourage me and for those that just get it.

Social media has brought the world closer, its connections have brought me friends I love dearly that I have yet to touch or hug, but they have pulled up when I’ve been feeling down, wrapping me up in encouragement and love.

Yes, social media has it low points but the community of parents with children with special needs have been a lifeline to me. I love seeing photos of their beautiful children, love sharing in their moments both good and the hard. Love being given the opportunity to support and encourage them as they do me.

So, will I let those that “feel uncomfortable” stop me from being part of this amazing community, no chance I love my people.

Will I hide my child from the world, no way he is too blooming gorgeous?

 

 

 

 

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.

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

 

 

 

 

A magical week

I’m not quite sure I can find the words to describe this last week. Being in that field In Wem has again surpassed any expectations I had.

I have been cocooned in a place where people get me. Where people understand my life. Where people share my joys and my heartaches.

Laughter is the greatest medicine of them all and this week there has been some dramatic healing going on.

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People came with stresses and worries and for this last week we have left them all behind and reminded ourselves of the true beauty In life, FRIENDSHIP

We all feel stronger with a good friend by our sides and that’s what this week has been about.

Community.

This week in that field in Wem has been incredible.

We have had fun days with bouncy castles and BBQs.

We have had balloon releases to celebrate and remember those that have gone before us. Tears have fallen and hearts have ached but together we were surrounded by love that eased our grieving souls.

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Everyone of us remembering a child or a loved one who was taken too soon.

The fragility of life with our children was there in the disappearing balloons but also the reminder to live life to the the full was there too.

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The special Olympic races were so much fun. The sheer joy and exhilaration as the children in their wheelchairs were raced along by competitive parents or teens.

Adults races with father and son determined to beat each other, young and old, wheelchair bound or wobbly walkers we had it all.

For me this was such a special time. Watching the faces of the children as they reached that finish line was priceless and such a wonderful memory to store up and cherish forever.

Special kids in the UK camp to me is all about grabbing life by both hands and living it.

The expectations and assumptions for our children get left at the gate.

I’ve spent a lot of time this week people watching and have had my heart refreshed by human kindness.

Teenagers being dragged about by toddlers. Young adults being followerd by young admirers.

I’m so proud to call these people my family.

I have had such a wonderful time. I could write blog post after blog post.

Sharing stories of a crazy gentleman who dress up in ball gowns.

Of a young man who defined the odds and took his first steps.

Of a terrifying car crash that thankfully only ended in a written off car, of the young driver who didnt care about about said car as long as his passengers were all ok.

Of trips to McDonald’s without shoes and of belly dancing and bottom talk.

I could share so much,

It was truly a magical week and although I am glad to be home in the comfort of my bed I am already missing my friends.

My nights around the campfire and the stories we share. Of drooping marshmallows and shared dreams.

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Camp was amazing this year I got to meet up with old friends and to make new ones.

Also my new motto from this week is simply

“Kill them with kindness”.

I love it.

Memories and monkeys

Last night I attended the dream night and Twycross Zoo a special event put on for children with disabilities and their families.

It was a fantastic night and the kids had a great time but a part of me was lost in the sadness of my memories.

Twycross zoo is a place full of shadows. Memories of Olivia are mixed up in the monkeys, the gorillas and especially the penguins.

As I walked around the zoo images of her excited face filled my mind.

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I could see her walk excitably over to the rabbits den, reaching out to touch their soft fluffy skin.

I see her laughing with joy as the penguins swam around under the water.

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Laughing out loud at the gorillas throwing their food.

I saw her everywhere and slowly it ripped open my heart.

Why is it that some days I can remember my baby with joy and peace. Yet others, the memories break apart the tattered pieces of my heart.

I often wonder if the pain will ever ease or will the tears always fill my eyes when I hear her name.

I guess the missing will never get easier.

I just have to get stronger to face it.