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. 

They say never meet your heroes.

It is said that you should never meet your heroes, but Daniel and I have to completely disagree.

Over this lockdown period we have struggled to engage Daniel and keep him occupied. He has never really been interested in television and especially not bothered with programmes aimed at his age group. So imagine our surprise when a chance watching of The Yorkshire Vet led to a new love for him. Daniel loves to listen to the animals and although I have yet to hear a consistent spoken “mom” my cheeky boy now is mooing along with the cows.

Daniel’s joy when the credits start rolling and when he recognises the music is so evident in his face, he sits and listens to the adventures that the vets go on and actually gets cross if anyone talks over the programme. He just loves it, I wonder if its the sounds of the animals or the fact that the programme is narrated and that the vets talk us through when they are doing. To be honest I believe its just a perfect combination for him.

So the Yorkshire Vet has been a blessing to us over this isolation period, we have watched, learned about animals and generally loved watching Daniel get so excited over something. It was this joy that made us decide that after lockdown we would take Daniel on an holiday to visit the places that are in the show, to walk the streets of his favourite vets, a Yorkshire Vet adventure.

Still even in my wildest dreams I could not have imagined how much of an adventure Daniel was to have.

Thanks to the wonderful world of social media the wife of Daniel’s favourite Yorkshire Vet Peter (sorry Julian) reached out, she had seen one of my videos of Daniel chatting to (his) Peter and wondered if we would like to meet him when we came to Yorkshire, would we ever, how exciting.

So last week we headed to Yorkshire in what to be honest we would believed would be a quick meet and greet with Daniels favourite.

Oh my goodness I’m not sure I can find the words to do our visit justice. Peter and Lin came and visited with us at the cottage we were staying in. They were lovely, from the programme Peter comes across as a caring kind gentleman and thats exactly who you meet. No airs or graces just compassion, genuie interest and just so lovely. Peter and Lin won our hearts in seconds, so often people do not know how to treat Daniel, we often face people who just dont acknowledge him or speak to him as if he is stupid. None of this happened, Daniel was reserved at first but after listening to Peter’s voice for five minutes he was completely engaged. Peter and Daniel were just chatting on the floor about Daniel’s desire to put his hand up a cows bum and Peter’s love of testicles (if you watch the programme you will understand this). Daniel adored both Peter and was a little smitten with his beautiful wife Lin. Their visit went beyond anything Alan and I could have imagined. It was so special that when they left we both actually cried with joy, the memories made for Daniel were priceless, yet they wasn’t to end there.

The very next day we met both Peter and Lin at the James Herriot museum, the place where Peter’s career as a vet began and the home and work place of the man whose books Daniel loves James Alfred Wight better known as James Herriot. Daniel was excited to visit the centre, to be honest not because of the history but because I had told them of the interactive cow that he could put his arm up and help birth a cow, the dreams of my child. We wandered around the museum listening to the stories of Lin and Peter of their times there, although the house has been restored to the days of Herriot it was lovely to hear the stories of Peter and Lin and the memories they had of the place. Daniel was super excited (in his own way) to reach the interactive cow and with a little help his arm was up that bum. Unfortuanly we soon realised that vets need longer arms and poor Daniel wasn’t able to reach the calf, but isnt that a perfect reason to visit again. We milked a cow, answered questions with Lin on the characters of the Yorkshire vet and literally just soaked in so many memories. Daniel had some photos with Peter and even sat on his lap, I say ‘even’ as over lockdown Daniels separation anxiety has become awful and he will barely leave my arms but it seems sitting with Peter was ok.

Just writing these memories down fills me with so much joy that the tears are flowing into my keyboard. I have no words to explain how much this meant to us all, Daniel was so happy to hear his Peter and for Alan and I we have magical memories to cherish.

Peter and Lin Wright are such a beautiful couple and we are left just feeling so honoured and blessed to have met them. As we sat there this Tuesday watching the Yorkshire Vet it just feels so special and different to have walked in the places we see, to have met the people we watch. Peter and Lin if you read this I cannot thank you enough for making my boys dream a reality and as for those who say never meet your heroes we completely disagree our hero was incredible.

What I have learned about grief.

As I head towards the 12th year since my daughter’s passing, I would have assumed that I would have gotten my head around the whole concept and direction of grief. Yet the only thing I have learned about grief in this time, is that I actually know nothing about grief. 

When you lose someone that has a piece of your heart there is no set way to move through the pain and if anyone is waiting for me or anybody else to get over loss well believe me, they will be waiting a long time. 

Grief is messy, it doesn’t fit into a box. There isn’t one way for everyone. Grief is unique, personal and often very lonely.

There are so many expectations about grief, a time to morn, a time to accept and a time to remember. Yet rules and assumptions over loss need to be binned. We cannot expect one person to grieve like another. Nor should we have the expectation or judge if someone deals with the pain in a way we wouldn’t. 

I remember vividly people’s well-meaning advice and comments. “Time will heal” “she is free from her disability” “you need to move on and pull yourself together ” oh and my favourite (insert sarcasm here) “God always chooses the special ones to call home, he needed another angel in heaven”. Honestly the times I wanted to answer WTF to this one you wouldn’t believe. 

I could rant on for weeks about the comments that made reference to my grief being less or that Olivia’s death wasn’t as devastating as it would be if she hadn’t had a disability or that her neurological disorder made me more prepared for her loss and so on and so. But I’m not falling down that rabbit hole right now, maybe another time.

Grief is not defined by the number of years, days, moments someone has lived. It’s by the love you have. 

The best description I’ve heard to describe grief is this 

“Grief, I’ve learned, is really just love. It’s all the love you want to give but cannot. All that unspent love gathers up in the corners of your eyes, the lump in your throat, and in that hollow part of your chest. Grief is just love with no place to go.”  Jamie Anderson 

Recently I have faced more loss, the people I love and care for have faced loss and right now in this current pandemic there is so much grief. Hearing and seeing all those in pain makes me acknowledge how raw grief is still now for me. 

Listening to those hurting right now makes me understand there are no words that can bring peace. No gesture that can ease any pain. But there are things that can make people feel less alone. 

Firstly, and most importantly I feel is just to give love. 

Don’t offer advice or platitudes.

Don’t tell them what they should be doing.

Don’t tell them how they should behave. 

Listen and give them space to tell you all their heart, share their memories even if you were part of them in fact especially if you were. Just let them remember and hold on as they need to. 

Don’t tell them that those they love are in a better place or God has called them home. Whilst I personally have no doubt that heaven is rather incredible, Livvy’s place is here in my arms and I truly don’t believe God stole my daughter from me because he needed another angel. Don’t make my God out to be someone like that. 

Don’t remind them that life has to go on, they know this but have to find their own way to navigate forward. 

And the biggest one of all, speak the name of the one they have lost. I know for so many they are scared that talking about the missing loved one will bring pain. Believe me the pain is already there, the silence just brings fear that the memories are fading that people are forgotten. I love talking about Livvy, feel so blessed when people ask me about her.

Just be there, be a friend, love on them and don’t give up on them. If they seem distant from you it is not personal the world is different for them and it takes time to re-find your way. Nearly 12 years on I’m still navigating this life without Livvy. 

Grief is a journey that only ends when we meet again. Life can and will be joyful again, just different from the one you had planned. Time will pass and some memories will fade but the imprint of those you love is timeless and is forever tattooed in your heart. 

Kaleidoscope of life.

I’m lying here next to Daniel and I’m watching him sleep. It’s not really the best way to spend my time I should be sleeping beside him but my anxiety is high tonight and somehow watching the rise and fall of his chest brings me peace.

The world still feels crazy right and now we are officially out of lockdown yet to be honest i’m more nervous than ever. The idea of being out and around people just makes me feel ill.

I wonder if i will ever feel normal again, if I will ever be able to go into a shopping centre and see people not virus’s everywhere?

I worry I’ve changed too much, that my desire to be surrounded by others is lost forever. Or will the anxiety fall with the lowering numbers?

I know I’m not alone, so many peopld have been effected by Covid 19. Physically or mentally the damage is vast and deep.

I’ve learned to allow myself to have days where I acknowledge my fear and my anxiety, something I used to struggle to do. Instead of trying to hide it away, i’m allowing my mind and body to be kind to itself. Ive been such a slow learner in this, I’ve hated myself for my anxiety, mocked my own weakness. I should have been stronger, I should have more faith, I should have…

I know now that I do have,

I do have strength and each day I show up.

I am strong,

I have faith, even the most devoted cry out to God at times. We aren’t supposed to live in isolation, God wants us to cry out to him. To give him all our fears.

Transparency is strength and it is also hope. Hope to others that they are not alone in their worries and fears. My openess has allowed me to realise i’m not the only one to feel this heaviness. My vulnerability has allowed others to say ” me too.”

I dont know what the future holds, each day the picture changes. A kaleidoscope of millions of pieces changing with a turn of a moment. But like the kaleidoscope the pieces fall into place creating a beautiful picture.

Anxiety, fear, pain, uncertainty are all just pieces of our final beautiful picture.

Dancing in the colours of my mind.

Have you ever closed your eyes tight so you can watch the colours as they dance across your minds eye? As a child I used to love doing this, escape into a world of colour.

My imagination was my happy place, somewhere I could be part of a world I created, a world that made sense because this planet we call earth never really felt like home.

Once I remember reading a book about cuckoo birds and was sure like their eggs I have been born into the wrong nest.

It’s a strange feeling seeing yourself in the features of those around you but not feeling connected in your heart.

Was I strange, am I strange, I guess both statements are open to arguement.

What I’ve realised as a mother is that being related does not mean that you are alike. I have birthed four amazing beautiful girls and whilst values and love for each other is similar their personalities could be no further from different, one outgoing, another reserved, one loves to learn, another loves to do. Each so creative and beautifully unique in these own special way. I celebrate this about them, so what cannot I not celebrate this about myself?

For a long time I felt that I could only be true in my imagination, that here in the real world I would have to play a part, a character created for me not by me.

Yet as I’ve grown and got older I’m finally beginning to spend time allowing the me from my imagination enter the me from the real world.

I’ve realised that to live truthfully you have to be true to yourself. You are not being fair to others if you pretend to be what you think they wish you to be.

Falseness brings hollowness.

This time in isolation right now has been hard for me as I’m sure it has for many others. Not being able to hide means that your heart has to shine out.

I’m learning so much about myself and about others. Those that truly value your connection and those that dont. Do I fit a need or a want? Was I a use or a heart to hold?.

This isolation time has illuminated so many things I was trying to hide from. But as much as I love my imagination, hiding from the pain in the multitude of dancing colours is still hiding.

Like so many others I am desperate for the lockdown to come to an end. For the world to feel safe again. Yet I dont want the world, my world to return to normal. I want to understand more about myself, to truly know my own heart. I want celebrate the true connections that have held and to truly allow myself to live my imagination in my real life, a life full of beautiful dancing colour.

With more…

Our God is a resurrection God. We believe in the resurrection of Jesus so we need to believe in the resurrection of our world, our country our people. 

Dont waste this time praying for what you had, pray for what you want your future to hold.

What has this time of fear, trouble, disease taught you?

What have you learned about yourself?

Are you going back into a job that you love, will you go back with renewed vigour? Will you look for a job that will fulfil you more?

When your children go back to school, will they go back with a more intense desire to learn, will you as their parents understand their way of learning better, be better advocates for them with a renewed understanding.

Have you learned of what you really need to survive? What is truly valuable in your life or maybe more importantly who is valued.

Will you understand yourself more, cherish your time more?

So often in life we forget that we live with the gift of resurrection. That we have the promise of more. So many right now will be heartbroken and believe me when I tell you I understand the pain of lost so deeply, so raw as if it was yesterday but I hold on to the promise of forever, the promise of our every tear being cherished.

May we come through this awful time and strive to live with more clarity, more truth, more time, more love and more hope. 

Control

We cannot go anywhere.

We don’t know when we will see those we love again.

We don’t know how or what our jobs will look like after this.

How will we cope?

What will eat?

Over the last few weeks, it has begun to feel like I have no choice in life. I cannot do what I want to do, I cannot hug those I wish to hold. I feel this weight on my chest of restriction. A noose of fear tightens day by day around my neck.

It’s hard to not feel in control of my own destiny.

Control is something I struggle with, a childhood that was often chaotic has led to an adulthood of craving the need to constrain. Yet when I read of God, I know in my heart that he has the ultimate authority of me.

Yet I still battle to hand over my control.

I’ve realised that for a long time I have mixed up control with manipulation something never used by our Father. It has taken me a while to see God’s authority is simply love.

Pure love.

Yet still even knowing this I have cried out to God this week, begged him to allow me a choice.

Yet as I was praying, I was given the image of two doors, and God was telling me simply you have a choice.

One door is faith, the other is self.

You see even in this midst I have always had a choice; I could live life depending on myself and this world or I could choose to trust what I know is true, my God.

“As for me and my house, we will serve the Lord. “Joshua 24:15

It is a scary time right now, I’m not going to pretend I am not living in fear because I am, but I am also living in faith.

I turn my fear into praise.

33 “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.” John 16:33  (NIV)

Take heart he has overcome this world.

As we enter into this Easter weekend just try and focus on the sacrifice of our saviour Jesus, imagine the many days and nights Jesus knew of what was coming before him. Yet even in this time, he turned his heart towards the father. Knowing he was to follow his Father’s will he still prayed for us, for those that had turned against him, he still loved us more.

Right now, in this time of too many toilet rolls and empty shelves pray harder than we have ever prayed before.

We may not know what the future holds but because of the cross, we know who holds the future

and he loves us so.

My confession.

Sometimes I cannot write, the words I wish to share do not form in my mind. I worry I’ve lost my way, concerned that the freedom I find in my words is lost forever.

Then I realise it’s not just writing I cannot do, reading, learning, being sociable all seem to be disappearing somewhere.

This may sound crazy but I have been doubting my own mind, who am I if I’m not doing all my normal things?

Then I realised that I’m not, not doing these things by choice. I haven’t made a conscience decsion to change who I am, no far from it. The truth is I have been invaded, my whole body and mind has been consumed by exhaustion.

I said to someone the other day I’m tired. Bless them they did not hear me, well they did but not really if that makes any sense. They seemed to acknowledge the sentiment and shared how their week had been tiring too. Obviously I was and are empathic to this but I really just wanted to say something more…

I’m tired, not just a week tired or I’ve had a few late nights tired. I’m about three years worth of tired.

I love my son with all my heart but due to his very complex needs he has an intensive 24 hours care plan which on the good days allows me a couple of hours at a time of sleep, on a bad night well, lets not go there.

I dream, yes I know that statement is ironic, but yes I dream of one night of pure oblivion sleep. One without medications, one without monitors, one without two hourly pad changes. I’m sorry if this sounds mean but I’m shattered.

For a long time I’ve not allowed myself to wish for this, the guilt completely breaking my heart. What kind of Mom am I wishing for a night of sleep? I know only to well how great is the gift that I get to love upon my child and how thankful I am when many others arms are empty. When my own arms ache to love upon his big sister, but I’m bone weary.

Actually in all honesty I don’t know why I’m sharing this, why I felt the need to write these feelings down. I know writing it down here does not change anything.

Yet in a way it does. I’m trying to challenge the thoughts and feelings that often control my mind. I’m learning to understand that beating up on myself isn’t good. I’m working on realising that all bad things that happen are not actually my fault and I’m trying, really trying to value who I am. So writing this post here is me being open and honest and realising that actually it’s ok to say you are tired, it’s ok to say you crave sleep. It does not take away your ability as a Mother, it does not mean you don’t love your child.

It simply means you are human, that I am human and human beings need sleep.

Well some do. 🤪

Life

Just seeing the word “life” leaves me feeling overwhelmed at the moment. It honestly feels like everything is coming at me from all directions. I feel lost, lonely, overloaded. I’ve tried to see what I can reduce and what I can change but I have responsibilities and for the most part, they don’t and cannot change when I feel this way. 

I read about finding a healthy life balance, but how do we know what that is? Some days I thrive on being busy, yet others my brain just ache’s with exhaustion. Quality of life, life skills, life lessons, life is what we are supposed to be living, but how really do we know what the life we are to lead is supposed to look like. 

I’ve been watching a programme about people who change their lives dramatically, give up the daily nine to five for lives in a wilderness. They lives seem happy, their lives seem content but they are still hard. I guess the place you live does play a part in the life you leave but it’s not the be-all and end-all, its not the answer.

Oh my goodness, sometimes I find these Five minute Friday challenges a step into the rabbit hole, I allow my fingers to type what random thoughts come into my mind. It’s liberating but sometimes scary, I guess I’m not sure where I am in this life at the moment. I know I don’t feel like I am where I should be, yet I also need to trust God has a plan for me. Is it wrong for me to wish he would send it to me in written form?

I guess, I know life is feeling hard right now, I also know that with what I have had to face in the last few months I should give myself a break.

Oh well, life is for learning and maybe this is a period of time I will be able to reflect upon in the future, who knows. 

Five minutes up.  

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It’s ok to be angry.

I am scared of anger, I didn’t or couldn’t allow myself to feel or acknowledge this emotion. Anger is wrong, anger breeds fear, anger can harm. Actually anger can do all of these things but I’ve finally realised that it’s also a valid emotion. That it’s ok to feel this way, it’s ok to be angry.

This may sound strange, but for me the relief in this knowledge has allowed me to breathe deeply. I’m not by nature a person who will rant and rave but for the last 43 years or from when I can remember acknowledging my emotions I have not allowed myself the freedom to be angry.

I know and understand why I dont but have to ever found yourself trying to calm yourself when you have felt hurt, wronged, annoyed this was my life. It was If I allowed myself this emotion I would be in the wrong.

Yet how do you stop yourself being angry, well for me I self blamed. Maybe I didn’t explain myself well enough, maybe I should be more compassionate, kinder, generous, clearer so on and so on. I turned the emotion inwards and believe me when I say that this can be so damaging.
I mean let’s be honest, I’m far from perfect but I am not to blame for everything.

Finally realising that anger has its place in life has been such a relief, allowing myself to feel fully is a freedom I didnt realise I was depriving myself from. I’m not now out there screaming at people but I am allowing myself to feel cross and annoyed. I am valuing my own time, space and actually the right to be. Like all emotions, happiness, sadness, excitement, fear, anger has its place. In a life where one wants to live fully one has to feel fully.

It’s crazy but now at 43 years of age I am still learning more and more about who I am. Life is quite the journey.

Joining in this week with the five minute friday. Pop over and give it a go.