Oh my goodness when I read the word for five minute Friday was cancel I really had to smile. Was this an ironic take on the whole of 2020? I literally felt that this could be the word for the year. Cancelled weddings, cancelled jobs, cancelled holidays, cancelled parties, cancelled meet ups. So many moments literally cancelled in the name of Covid 19. Yet the more I thought on the word God pressed on my heart that I needed to cancel my negatively that I needed to cancel my fear. I needed to cancel my attitude.
Oh my, how right he is.
I’ve let myself lose my hope this last week or so. I’ve given in to anxiety and fear as the numbers have risen my hope has decreased. I just felt that I was spiralling into darkness and my attitude well let just say just cancelling it would be polite.
I don’t know what has pulled me into the despair I have felt this last week, maybe the negatively on social media. Christmas is cancelled is the main one I have read so many times.
But has it?
If Christmas is a time of celebration of the birth of Jesus well how can we cancel something that has gone before. I mean I know Covid 19 can spread but time travelling well I don’t think so. So how can Christmas be cancelled it can’t, it’s just our attitude that needs adjusting. OK we may not all be able to be together but we can rejoice as one. Send our prayers of thanksgiving in union, celebrate in togetherness. Wherever we are in the world although we cannot physically touch our hearts can join to love the birth of our Saviour.
Whilst Santa may not get to visit this year, I mean come house visits are a no go we can still bring joy in our children’s hearts. There may not be any sparkly Christmas parties but have a get together on zoom and have a cake and enjoy the real reason for the season. Let’s cancel our expectations of what should be and celebrate what can be. Christmas may look different this year but different does not have to always be bad.
Maybe this year we let go of the commercialism and the must haves and just celebrate in gratitude of what we already have. If 2020 has taught us anything is that nothing is guaranteed so love each other harder and remember Christmas is not cancelled just our expectations of what it should be.
I wonder what life would be if we could just press a button and put it on pause.
Would it allow us to catch our breaths, give us time to process or would it just delay emotions from that we cannot hide?
Yet who in the world would really want to pause 2020? Aren’t most of us wishing it away as quick as possible but the reality is until the virus goes away 2021 isn’t going to be that much easier.
Yet how about those that have given birth this year do they want to pause those first moments with their child or cherish the beautiful progression of growth?
Those whose loved ones are leaving us would they pause just to hold on for a moment or two more?
I honestly believe at times I would have paused my life back in 2008, weeks months or moments before I lost my beautiful daughter, seconds before my was heart was broken. Would I have paused just to hold her there?
Would that be right?
Would that have been fair?
What I’m learning is that life has to be lived, it has to play out all the notes that create the beautiful and sometimes tragic melodies of life. Unique symphonies for each and everyone of us.
That hitting pause button would stop the song playing yet it would not change the notes of the melody.
Still the idea of just holding on to a moment is something I have desperately craved but what happens when you press pause on the TV or a song, nothing just silence.
So regardless of the desire to hold my daughter once again I accept that her earthly melody has finished, but I do let my mind imagine how wonderful her heavenly one will be.
Its been 12 years since Olivia passed yes 12 years, 4883 days, each one so full of missing, so full of pain yet in a strange but beautiful way have been so full of joy.
I have so many beautiful memories to share of Livvy, every new person who enters into my life becomes a new heart to introduce her too. The hours I’ve spend with Daniel telling him about his incredible mischievous sister and all the wonderful moments she gave me. Though this may sound crazy but I’m sure he looks at me to say “yes mom I met her”. It fact if you forgive my brain waffling away i’m sure she send him to me.
Life is strange and whilst I write about about a song being allowed to play its own tune if I could just go back and pause 2008 before that fateful night, just pause if only on the night before when her giggle filled the air like the sparkles from fireworks making us all feel happy and so blessed. Just stop there for one more hug, one more chance to hold her sweet soft hand in mine, one more opportunity to tell her how much I love her. I would pause in heartbeat, maybe for just a moment or in reality until the timer ran out but just for one beautiful moment my heart and my arms would be holding my beautiful Livvy once again, yes I would pause.
Yet I know I cannot and I know it is not meant to be, I mean a song isn’t the same if you don’t get to listen to all the beautiful melodies that it holds. I got to listen, watch and love Livvy’s song and know one day I will hold, see and hear the sweet notes of her unique wonderous melody again.
October is Rett Syndrome awareness month and its something I always try to write about and share in hope of raising awareness, knowledge and the importance of fundraising for research. The problem is this year I don’t know what to write that I haven’t written before. If I’m honest I’m not up to date with current research treatment or therapies, I can point you towards Reverse Rett UK and Rett UK who would be able to inspire and educate you so that you can learn more, but in all truthfulness I am a little out of touch
So what can I share?
What does Rett syndrome mean to me?
I’ve said it before but I will say it again Rett syndrome is a thief in the night. It robbed me of light and left me in darkness.
It is so easy in grief to focus on the happy memories, the good times you had with the one you lost and I know without a doubt I do this with my memories of Livvy. I struggle to remember the dark days because it’s hard enough living with the missing, let alone voluntary visiting the pain . But Rett Syndrome didn’t just steal Livvy’s life it often robbed her of moments.
Seizures played a massive part in Livvy’s life from the first one ever to the 26 she had that same day to the 106 of the next. They came and stole the light out of my beautiful girls eyes. If I’m being honest I had expected to lose her to these, as so many times before we had come close. The horrible thing with seizures besides watching your child contort painfully is the medications that are needed to control them. Besides damping down the seizure activity they also reduced the way Livvy could interact with the world. Hours slept away, moments missed and memories not made. We struggled for a long time to find any sort of balance ending with a vicious compromise of a few seizures each day just to be able to see my daughter smile. Accepting that her brain had to misfire daily just so she could live and engage in life.
Bargaining with the devil in ’ Hope’.
This is Rett syndrome
I remember vividly the first time Livvy went blue, her lips so ashen, her face so pale. What in the world, how in a spilt second had my child lost the ability to breathe, thank you again Rett syndrome.
The breathing abnormalities of Rett Sydrome are a lot better recognised now but when Livvy started with this complication nobody had a clue. Dr’s were baffled, seizures were blamed and more medications were tried. I remember once being in the hospital and literally wanting to throw the SATS monitor and smash it into a wall. Watching those numbers drop and knowing I could do nothing to stop it, broke my heart.
This is Rett Syndrome.
Livvy passed her 18 month health assessment with flying colours, she was a little delayed with walking but everything else seemed on par. Some children like to crawl for longer and Livvy was everywhere and in to everything. So nothing could have prepared me for the following months watching my beautiful sparkly eyed girl disappear right in front of me. First went her words, then her eye contact and finally her balance. Her ability to hold and play with her toys were lost in the never ending wringing of her hands. Her smile lost into the endless days of screaming.
This is regression, this is Rett Syndrome.
As I’m writing this I’m finding myself so full of anger, so full of pain. The reality is Rett Syndrome stole my daughter from me twice. My heart is beating fast as I remember the fear of the not knowing, the lack of understanding from Drs and specialists who I was praying would have the answers. The loneliness of this time, my retreating from family and friends as I couldn’t explain her behaviour, I felt like a failure. I was letting everyone down, I was letting Livvy down.
This is Rett Syndrome
Gosh that hurts to write, but the truth is I cannot bring Livvy back by reliving these emotions, by sharing my heart and fear it isn’t to resurrect my daughter, if only. The reason I share and the reason I am passionate about advocating for Rett Syndrome is that today another child has been born with this evil syndrome another set of parents hearts are being broken right now. Another child is suffering .
1 in 10,000 children a year are born with this devastating condition and by raising awareness, by fundraising I can hope and pray that their journeys are less scary than mine. That treatments are found to combat the evil seizures, the fear in the abnormal breathing, the pain from the scoliosis, the frustration in the lack of understanding and the heartbreaking ability of not being heard.
I write and share in hope that one day when a child is born with the condition Dr’s will be able to say we have a cure or we have these amazing treatments that will stop the thief known as Rett syndrome.
I write and will continue to do so in hope.
Hope in action can and will defeat Rett Syndrome. In memory of Livvy and all those amazing children and their dear families, we hope.
The world feels so crazy right, I feel bombarded from all directions. Opinions are overrunning friendships and relationships are crumbling around me.
I have no idea what to do for the best, if my decisions are right. All I know is that I’m trying to do whats best for us right now.
Somedays I feel like I cannot breathe, as if the air is no longer feeding my lungs. Oxygen being replaced by anxiety, fear, propaganda. I dont want to listen any more, I dont want to learn anymore. I just want to hide.
Covid 19 has become beyond a virus of the body its turning into a deathly virus of the mind. Depression, anxiety also hate and injustice.
I want to just cry at the pain I see around me, the loss of life, the loss of lives. So many restrictions needed yet ignored, so much scientific proof dispelled as myth.
Why can we not unite, take care of our vulnerable, stand for those in need and sacrifice for others?
Why can we not care, care enough.
Its been a while since I joined in with a Five minute Friday, free writing for five minutes taking inspiration from this weeks word. Why don’t you join in xx
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.
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.
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.
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.
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.