Let all children dream.

If you follow my instagram account you may have watched my stories last night where I try and explain my sadness at a comment that was made a few weeks ago on one of my photos. I tried to explain why this comment had upset me  ( not sure thats the right sentiment) but feel like I want to explore my feelings a little further, so here we go. 

I had as I said posted a photo of Daniel dressed up in a vet costume a friend had brought for him, the photo as you can see here is of a little boy just loving role play and having fun. The comment posted asked me ‘paraphrased’ “Am I setting Daniel up and giving him unrealistic aspirations as he is never going to be a vet”? 

Well, how, where do I start to reply to this? I think the answer to this question has many layers, my first could simply be “Oh please do one, its mine and my sons life”. But lets be honest thats not me, it also shuts down any conversation that I feel needs to happen regarding this question. 

Secondly my response could be and the one I did actually answer with “ would you make this comment if Daniel was neurotypical, would you feel drawn to tell any other 6 year old that they cannot be what they wish when they are older? “ Maybe I am wrong and the person is a joy robber ( side note here, this is my pet name for my husband, marriage counselling maybe?)  Maybe the question asker would ask this of all children, but if I am honest I don’t think so. I believe the question was asked due to Daniel’s disabilities and what people see as his limitations. 

I will never limit Daniel by a list of his disabilities, our family motto is ‘never say never’ and so far Daniel has exceeded expectations across the board. If one day he does get his bum through veterinary school, then and only then will I let him treat my pets ha ha but until then I will encourage and support in all he wishes to do. I refuse to limit my child and I believe that every child has the right to dream. If they didn’t we wouldn’t see scientists make discoveries, artists paint masterpieces and paralympians win Gold.

These were all children who were allowed to dream.  

When I read the comment on my post, I viewed as you do the grid of the account holder and there on one of the photo’s a child was in a spider-man costume, maybe I am being a little bit of a cow but am I the only one seeing the hypocrisy in that?  I mean who am I to limit a child’s dream, but will that child really be Spider-man one day? 

So for those of you who were worried that this comment had offended me please don’t be, it didn’t one of the few things you will never knock me down for is my belief in my children. Each and every one of them I have told to aim high and to not settle. I don’t mean achieve the best pay checks ( not a bad thing though)  or have a house full of fancy things but to find their passion and to live it. I will always be the biggest advocate and the loudest cheerleader for my children, too loud my girls might say. 

The reason I shared the comment as I usually try not to feed the trolls was because I wanted to open a conversation on the perspectives of people and what they see when they see children with disabilities. I want people to think before they ask a question. Would this question be one I would voice if it was regarding a neurotypical child? Is it really a question with relevance ( I mean I wasn’t challenging her child’s desire to be spider-man)? 

Yet most of all why oh why do you feel the need to stop a child dreaming, imagination is a gift that should be nurtured and encouraged. We should encourage the dreams our children dare to dream. Celebrate when they push the boundaries from what has been, into the domain of what could be. I don’t want to live in a world where all children aspire to be the same, I want individuals, adventurers, artists, musicians. I know I want my girls and Daniel to go for they hearts desire, they may not get it but at least they have tried. 

The crazy thing about all this is that Daniel has no desire (right now) to really be a vet, he is isn’t searching university courses, or reading his biology books. He is just a gorgeous young man who finds it hilarious when Vets takes testicles off and has a strange desire to put his hands up a cows bum. 

So to all the 6 year old astronauts, pirates, super heroes and dragon tamers keep dreaming, let your imagination run free. Create new worlds of adventure and excitement. You are the future generation and I am excited to see the amazing lives you will lead. As for Daniel right now he is dreaming that his arm will grow a little longer as he just couldn’t reach that pesky calf, next time, next time. 

No drama

I had a friend once, I use the term friend rather loosely now but then she was what I would class as dear to me. We had walked though a lot together and I assumed we would continue to do so.

Then when in the midst of Livvy’s regression I was crying down the phone to her when she uttered the words that have scarred my heart for such a long term “I swear your life is like a trashy soap opera, everything happens to you, or maybe you just like the drama”.

I remember the impact of these words as if it was yesterday. How anyone could believe that this was the journey of life I had wanted to take was beyond me but to accuse me of being dramatic hurt. In fact it hurt so much that I shut down, I didn’t allow my feelings to show. I closed the door on that friendship and many others in fear of judgement.

Why am I telling you all this?

Because I am in a place now where I am ready to own my own story. Ready to embrace what I have lived, not with echoes of shame but with pride.

Having a child who was born with a debiliatiting condition was hard but not knowing what it was and not expecting it was literally a nightmare. I cannot find the words to explain how painful it was to lose my daughter to Rett Syndrome, twice. Watching her eyes leave my face, her words disappear from my ears and her movements lost to the stereotypical.

To see the fear in her eyes as she screamed and screamed, crying out for me to rescue her. It broke me in inside, I cried out to God so often to heal her.

But he didn’t.

Yet slowly and surely he healed me.

I finally began to embrace the journey I was set upon, although it was very different from anything I could have ever imagined it was full of wonder and joy.

Joy, does that surprise you?

My daughter had a severe devastating condition, my son has a very complex disability but both of them loved, loves life in a way that brought, that brings me so much light.

It’s took me a long time to get to a place where I don’t apologise for what some see “as drama” in my life.

I have surrounded myself with people who get it or who try to understand it.

I have walked away from those who don’t or who don’t want to.

I can accept that some people cannot understand the life I lived or now the life I have chosen and that’s ok.

We are never going to be a typical family and I am embracing that, celebrating that.

Yes at times I am lonely and I do get sad at having to apologise for another missed get together, group activity or friendship meal.

But my children will always be my first priority, always my heart.

I don’t know if my friend understood the impact of her words or how they would change me inside. Maybe it was meant as a throw away comment that wasn’t supposed to find roots and bury itself deep.

Maybe it was my state of mind back then that fed and watered these seeds of deceit.

I don’t know and I actually don’t care.

Because I’m not that person anymore.

I cannot say that harsh words don’t still sting or dig deep in my heart, but they don’t get to stay and or get to take root anymore.

I am stronger than I have ever been.

I have faced the darkness of death and my memories, love brought me the light.

I face the suffocation of fear but my sons smile breathes air into my lungs.

My children are my world, they are the air that I need to breathe.

I am stronger for being their Mama.

My faith is stronger than my fear.

A special field

This weekend I received some news I knew was coming yet never wanted to hear. My friends child had passed away, disappeared into the hours of the morning leaving behind a heartbroken mother. My friend knew she didn’t have forever but was praying desperately for one more day.

One more day.

How often I would wish for Livvy one more day, one more hug, one more giggle.

How often do i allow grief to consume my heart?

Too often .

This last week I have been camping in a special field in Shropshire, the field itself isn’t rather special but for a week or two each year it transforms into something rather remarkable.

From the grassy emptiness it becomes full with love, laughter and friendship.

It overflows with energy, life and living.

For this time each year this field becomes a place where friendships are forged in life experiences.

This field becomes a place where children the world tells cannot, CAN.

This field is rather dangerous though, it is rife with infection, a infectious disease known as hope.

It creeps up into your soul and you start to believe that anything is possible.

Children who can not communicate start to talk, children who cannot walk take steps.

Parents close to breaking become refreshed, families divided are reunited.

This field has no barriers, its a place where everyone gets to be exactly who they were made to be. Not everyone gets on but there is a freedom in acceptance. We are all walking our own pathways and sometimes they can be overwhelming, but here on this field thats ok. You can cry, scream or break down, complete in the knowledge that we all get it.

Over the last week I have become a people watcher, I have observed shy children blossom in confidence, from the first awkward hello to beginnings of life long friendships.

From fire pits to bouncy castles friendship has flowed around this field, some already a lifetime in the making, others being created in that moment.

I have heard so much laughter than even in my grief it has lifted my spirit.

We have had fancy dress from the cute to the never to be unseen, quiz nights, animals and magic. We have hosted our own special Olympics with a level of competitiveness and determination I still can not get over. A child may not be able to walk but they can scream with joy at whizzing over the ground determined to get a medal on their chest.

A balloon release so painful yet so beautiful, how can the most painful part of the week be the most amazing? My heart breaks as I watch those balloons lift up into the sky, my soul aches for my Livvy so desperately I can hear it scream. Yet as my eyes drop to those around me I am struck by how wonderful life is. How everyone standing there beside me gets it somehow. Some may have experienced a loss, others may live in fear of it.

Yet fear of death isn’t found on this field, fear isn’t welcome here.

This field, this camp is about living.

Its about packing life into every moment.

Its about cherishing one another and holding on to what really matters.

The world isn’t allowed on our field, for a week each year we are protected from the daily battles our lives bring to our doors. People who don’t understand don’t visit this sacred place, every chair is filled with people that understand or accept.

Different struggles, different issues, different lives but we are united in our love, our love for our unique wonderful courageous children.

Our special kids. 

 

  • A big thank you to  all at Lower Lacon caravan park for looking after our special field for us all. For welcoming us in a way I have never experienced on any campsite anywhere else and for also being just truly wonderful people that I am pleased to call my friends.

Who am I? Who are you?

What would you say if I asked you “Who are you?” or “Who am I?”

I may read from my about me page but is that really who I am?

Partly

I am a crazy tattooed mum to four amazing young ladies..

A foster mum to one very special young man.

I am a gothic loving lady who is finally learning to love her plus sized body.

A new lover of fashion and with a complete addiction to books.

 

Yet I am also a woman who thinks way to much and often gets lost inside my own head.

I worry all the time.

From

Have i done that right?

Are the kids ok?

Will they like me?

To

Why are children dying?

Why are there so many wars?

Why do some have so much when others have nothing?

 

It’ so hard to answer the question “who am I?”

I think I can only answer this as who I am right now.

 

Life is always evolving.

I am not the person I was 10 years ago.

I am not the person I was last month.

In fact I am not the same person as I was yesterday.

 

Life, events, circustances and people they change me.

who am I

 

So what would you answer if I asked you ” who are you?”