October is Rett syndrome awareness month and I need for more people to know and understand and fight with me against this devastating condition. I need people to remember my beautiful girl, my wonderful joy giving daughter who my heart aches for. I need to celebrate her life and the wonderful nine and a half years I had with her, whilst also praying desperately for a cure for those suffering with this condition right now.
I need people to realise you cannot walk away even when your heart is broken. You have to, no you need to fight, fight for every child, fight for the hearts of every parent.
My arms are empty due to Rett Syndrome, in Livvy’s memory I won’t give up until there are #nomoreemptyarms.
I cried, I am so frustrated with myself but I cried.
On Friday 10th September 2021, I attended the DCP parliamentary event to raise awareness of the impact of Covid-19 on disabled children and young people. As a parent carer I was asked to discuss the impact of Covid -19 on our lives. The event was hosted by the lovely Mary Foy MP and the fantastic DCP staff.
I had been given the list of questions before the event, I had my answers prepared, I so wanted to be professional and get across the impact of how Covid-19 has affected our lives, but as soon as the question was asked I cried.
I cried because I had listened to the young people as they shared how they had been affected by Covid-19, their words, their struggles, I cried.
I cried because there I was asking, begging parliamentarians to see my son, to see me.
The week of this meeting we had been away to Yorkshire for a few days and we had to return because of Daniels need for bloods and his levels checked. We also came home because we couldn’t afford to book an accessible place to stay and we were physically broken.
The night before the meeting I had held Daniel tight as he tried to breathe through another panic attack. Why should a seven year old feel so much fear?
The morning of the meeting my back had given up lifting Daniel as we still wait for his hoists and adaptions to be done nearly two years on from the planning, Covid delays.
I cried because I was exhausted and I was tired of pretending to be brave.
This event mattered, it was an opportunity for those attending to hear firsthand the impact the pandemic as had, not the numbers, but the people. It was important to give the parliamentarians the opportunity to hear our stories but also to ask us, how, why and what could be done. To reach the ears of those that can effect change, their voices heard.
I cannot find the words to do justice to the impact of Covid- 19 on my family, on Daniel. How do I find the words to describe the fear of a young boy who felt abandoned, who felt forgotten? A boy who has been hospitalised due to separation anxiety, the fear that I will leave him like others. How do I explain the impact of watching my daughter sob heartbroken because her baby brother is reaching for her and she cannot hold him, cannot hold him close and tell him it will be ok, because its not.
How do I tell you about the fear that my son may get this virus and that it may take him from me, the anxiety that crushes my chest every time I have to engage with the outside world? What if I caught the virus, who would care for him, who would love him the way he deserves to be loved?
Words are inadequate when I see his body stiffen and his pain levels raise due to no physiotherapy beyond what I can do, but I am not a professional. Sitting in a wheelchair that is crushing his chest so that his breathing is harder, new wheelchair delayed because of Covid.
What words describe the exhaustion of my husband and I managing a 24 hour care plan with no support, sleeping in shifts, broken, scared and exhausted. Our beautiful boy dependant on us for everything yet our human bodies were failing.
Covid-19 has impacted so many, I am not trying to underestimate that, but I have sat watching our politicians on the screen waiting, praying for them to talk about my son and those like him. To mention the parent carers isolated at home, yet no words are spoken for them.
This meeting mattered and I am annoyed I cried but how could I not, I am broken, I am isolated and I am angry that my child was forgotten.
” I want my son to matter, I want him to be spoken about”
This meeting was to highlight and raise attention to the research and report published by the Disabled Children’s Partnership
Then There Was Silence – brings this research together alongside new analysis and an evaluation of how the voluntary sector responded to the meet the needs of children and families. It draws on the experiences of countless families, through surveys and interviews, as well as information obtained through Freedom of Information requests and other research.
Key findings in the report are that –
Children and families have been isolated and abandoned; and not been listened to.
Covid restrictions meant services were stopped or reduced; and many are still slow to return.
Mental health and wellbeing of all the family has deteriorated.
Children’s conditions have worsened and needs become more complex; delays in assessments mean needs haven’t been identified.
The charity sector demonstrates agility and flexibility and was able to extend its reach to help support families.
As a result of our findings, we have identified five vital steps for central government, local government and the NHS.
Prioritise the needs of disabled children and their families within covid recovery plans and programmes.
Tackle the backlog in assessments and ensure that children’s needs are re-assessed in light of missed support during the pandemic.
Ensure the right support is in place for all children and families, including education, health (including mental health), therapies and equipment.
Take a whole family approach to assessments and support, including siblings. This should include the provision of respite/short breaks and opportunities for families to take part in activities to overcome the isolation felt by so many.
Invest in disabled children’s health and care services through the Comprehensive Spending Review.
This report is the tip of an iceberg, Covid-19 has only highlighted a system that was already failing, underfunded and uncared for. Children and young people with disabilities matter, they deserve to live a fulfilled life whatever that may look like. They deserve love, compassion and the chance to achieve. But most of all now as we try and return to some normality of life with Covid-19 these children, these young people need to heard.
It’s 3am, I’m exhausted but my son just cannot settle. The awful panic attack he had earlier today at school is fresh in my mind and on my heart. The constant swallowing he is doing makes me realise we are not fully over it. The professionals are calling it separation anxiety, I just call it heartbreaking.
I hate that his history has such an impact of his future. How lack of care can leave such fear?
I’ve read the adoption books, studied to degree level the trauma publications, but none cover him. The complex medical missing in the pages of attachment and trauma. I guess children with complex needs don’t suffer with emotional issues, cue a eye roll of frustration here.
It’s strange but sometimes I feel guilt for not being there at his birth, absurd I know but how my mama’s heart wished he had never to feel unsafe, alone, abandoned. I do wonder if other adopted parents feel this way? I know it’s not rational but love and rationality don’t always go hand in hand.
Oh my heart, how I love my boy, my exhaustion right now pales in my love for this sweet sweet boy. Oh how I wish my love could stop the pain, would take away all fear.
My arms ache, he isn’t a baby anymore, his weight is heavy on my shoulders. His fear is heavy on my heart.
I can hear his breathing now, he is falling deeper into sleep. I need to follow him tomorrow is a busy day.
I’ve spent sometime tonight praying over him, my prayers seem to bring him peace. I ask God to heal his fragile heart, to take away his fear but mostly I give thanks that he found me. Thanking God for the honour of caring for him and the gift of loving him.
I never thought I was one who wished to travel. I never got the itchy feet or desperate need to go exploring. But I’ve realised I hadn’t learn my passion yet. Over this last year my son Daniel has become obsessed with animals and veternairy programs and from joining him in watching them I have discovered a desire to go places and explore the wilderness. I have fallen in love with places from Yorkshire to the YukonI. want to go visit the places that we watch. We started with the beautiful Yorkshire last year and I have fallen completely in love and seriously would pack up now if I could. The beauty of the area has literally enriched my heart.
I want to go see the animals in their natural habitat or as close as possible. I want to explore.
Actually I want to explore more than I have ever have done and I mean ever before. I think sometimes you have to find you to find out where you wish to go. Over the last year along with Daniel I have got lost in the learning of Gods beautiful creatures. Watching, learning has left me with a desire I never knew I had. I mean I’ve always liked animals but never wanted to know them as I do now. The idea of just waking up surrounded by space and animals just sounds so wonderful to me. Forget the big cities they have never held excitement for me, give me mud, grass and air I can breathe in deep.
I think it’s so easy to just assume you should go where others go. The places chosen by others do not have to be your places. Understanding this has allowed me to understand me more and the places I want to explore.
I’m scared of intentions, even those made with the best at heart. I’m fearful for making plans. It’s something I was trying to work on then Covid came to visit and how many plans have had to change, stop.
Growing up I struggled, I lived with a lot of broken promises, shall we do this next time forgotten by others not by me. Financially issues didn’t always allow things to happen that I could understand but sometimes out of sight out of mind was the stronger inflection.
So when plans were made I didn’t get excited I didn’t trust. So intention is something I hold at a distant.
Being a mom of a child of a complex child I know the best intentions can be easily changed only last week our holiday, our plans were cut short. But somehow that’s different that’s not through disregard or lack of respect.
I seriously struggle to make plans because I know my life circumstances often lead to cancelling or changing and I hate that someone things I cannot be bothered or do not care. So I stay hesitate and often say no in fear.
To me the word intention holds a responsibility to try and so when spoken by others I’m guarded. In therapy my goal was allow myself to get excited and I was almost there then blooming Covid came along.
I do want to know the joy of waiting, the excitement of what’s coming but for now I’m still a long way off but my intention oh the irony is to try.
I am wondering about life too much, my mind stumbles over the what if’s, the maybe’s, the should be’s. I am feeling lost and I am not sure why.
This last year have been hard on so many, the losses, the isolation, the fear has placed a heavy toll on our society and yes I have missed so much and my worries for Daniel’s health, his anxiety, his fear of people leave me with a uneasy feeling I can not shift. Can I get him back to where he was physically, can I get him back into school, can I stop him having such awful panic attacks? Are all questions I cannot answer right now. Yet I have a quiet acceptance that a pandemic is trying times and holding on to what should be, seems lost in the thankfulness that we are still here when so many others aren’t. The fact that I can worry about Daniel is a gift that I am trying to be grateful for. How strange is that of a statement being grateful for a worry, maybe it’s the fact that I have one child in heaven that I desperately wish I could worry about once again gives me this perspective.
I am trying to be thankful more,I cannot stay in this negative fear based reality anymore, if I do I don’t think mentally I would survive. For months I have been obsessed with numbers, with testing, with symptoms with fear. Frightened that allowing anyone into our lives would be a risk that I couldn’t take. Honestly I have been awful, hating my husband for his RC racing, for talking to someone outside a store, the fear of everything being so overwhelming that my stomach has not settled for months.
So I am trying to fight the negativity in my mind, giving thanks for the vaccine, for the lateral tests, for the research, for the scientists and especially for the wonderful NHS those that haven’t given up when many would have done.
I’m trying to find a balance between safety, protection and living. Daniel and I cannot hide between the walls of our home anymore, I cannot hide anymore.
So as I write this I am in the one of the places I swear my soul knows, North Yorkshire, we visited here for the first time last year and I never wanted to leave. The people, the places, the air all somehow allows my soul to breathe deep. I know my worries and fears haven’t disappeared but in the openness of this country my heart just finds peace.
Its not perfect, I mean today we tried to park our wheelchair adapted van in Whitby and it so didn’t happen, besides people deciding they fancied dicing with death crossing roads, today we just could not find anywhere to park our big van that allowed us to get Daniel’s chair out. So after a rather stressful (husband) drive around the town we gave up and decided to take Daniel to Staithes the little seaside village where Old Jacks boat was filmed. The information we read told us of the lovely harbour, the beautiful quaint cobblestone streets it forgot to mention the heart attack hill to the harbour. Holding on to Daniels chair for dear life as we went down the hill, returning up was well actually fine as I sent poor hubby up to drive the van down. It just wasn’t safe for us to push Daniels chair up the hill the gradient was so high it would be an extreme risk and thats my excuse and I am sticking with it. Also Old Jack’s boat wasn’t to be found. So as I was saying far from perfect but somehow it just felt different.
Full disclosure I am not a great traveller, especially now with Daniel. Anyone who is a parent of a child with complex needs will tell you packing for your child feels like planning an army mission. You cannot just wing it because the things you need cannot just be picked up at the local shop whilst you there. Medications, pads, feeding supplies, formula, syringes the list is endless. This is all after I have done my recognisance on the area, where is the local hospital, will it cater for my child, is there a specialist, PICU etc etc ? The worry of making sure I can keep Daniel safe does weight heavy but again full disclosure he is so worth it all. But yes it does impact on my desire to travel. My girls used to joke I had to say “I wasn’t going” at least three or four times before we finally got into the van. I personally blame them I mean essentials for a weekend away does not mean you need 8 pairs of shoes, also underwear is a must.
Anyway back to my title of this post, its 2am and I cannot sleep yes the heat isn’t helping, yes the desire to suffocate Alan for his snoring is strong but mostly my soul is restless. It’s a weird feeling like I am supposed to be doing something but I just don’t know what. I feel a tugging at my mind telling me something but what it is saying is just out of my hearing.
Does any of this make sense?
I am not sure but for some reason I think change is coming. I don’t feel anxious about this change which is a miracle in itself, but I do feel itchy as if I am ready to get started. Maybe it’s Yorkshire I mean they make the best tea here so I definitely could believe its a county of change, vision and hope.
I am just going to try and get some sleep and see what tomorrow brings. Whatever the sunrise brings with it I will try and be thankful and stay hopeful.
Sleepless in Yorkshire in the middle of what is yet to be.
I woke last night screaming, somehow my sleep had become a time machine and I was there again in the hospital begging my child to wake. Desperate to see her chest rise again, begging the Lord to save her.
How can 12 years just disappear in a moment?
Yet I know in grief, time is only my enemy.
I miss my girlie so much, how I wish I could just hold her in my arms once more, to just breathe in the sweet smell of her hair.
Grief is a complex devil, playing games with your heart moment by moment, memory by memory.
Does it ever end?
Only with eternity I guess.
Oh I never knew the heart could survive such pain. The crushing weight becoming bearable against my wishes.
I don’t want to sleep again, I had to leave her once I’m not sure I could do it again.
Why does your memory invade your dreams?
Is there nowhere free from grief?
I couldn’t pretend for a while, I could not create the facade of being ok in those darkness hours. So I let the tears fall and as my whole soul hiccuped through my body I allowed myself to miss her.
I let the memories swarm my mind like a tapestry of bees as they create their honey, I created my moments again. I held her in my arms, I heard her sweet giggle of mischief on the symphony of the night and I breathed her in deep and I sobbed.
I still don’t understand why I had to lose her, why Rett Syndrome had to win the battle for her life. Yet I know it wasn’t for the lack of love. My Livvy, their Livvy, your Livvy was loved with the depths of so many hearts.
If love could have saved her life she would be here.
No the question still stands unanswered, our hearts still forever broken.
I couldn’t breathe anymore the tears had tore my soul and I did fall into an exhausted sleep.
I wake still desperate to hold my daughter once again.
The new day begins,
I trust, I breathe and I hope.
Until we meet again my beautiful girl, until.
Joining in again with five minute Friday, set your timer for five minutes and write.
I swear my body and mind are in conspiracy to drive me crazy. My body aches and I’m so tired I can barely keep my eyes open. I finally fall into bed and ping, my mind starts its endless racing. Have we done this? Did you remember to do that? What about this? What about that? What happened, what if this happened oh my goodness please stop.
I read a post the other day, a friend not a close friend we haven’t met but someone who matters to my heart reached the darkeness and her world was so dark we nearly lost her to it and my heart broke. Yes the joy of the nearly was full of gratefulness but the sadness that the facade of social media had not let us see their pain.
But it’s hard isn’t it, to raise your hand and say I’m struggling.
I call it my advance and retreat. I try to be honest, to be brave, to be raw then in the morning light my weakeness fuels my shame.
I should be coping
I’m so blesssed
Others have it worse
Others have enough on their plates
Don’t put on others
Stop being dramatic,
This last statement is my core enemy.
My childhood was full of being told I’m to dramatic, to emotional, too much.
Even now the narrative is different yet still hauntingly the same, you care to much, what if doesn’t happen, let it go.
Still shame based observations of my heart.
You see we are all unique and whilst the stiff upper lip is so celebrated it is also the weight that holds so many people down.
We should be taught from an early age to be open and honest. Tender hearts should be celebrated, anxiety understood, overthinkers heard.
Our children should learn from day one that the way they feel is perfectly ok. If it doesn’t make sense to others that’s also fine, that the world would be a boring place if we all thought and felt the same.
But we aren’t are we, our children are taught by rote, uniformed to be, to do, to fit.
To be seen and not heard once held by parental control now often controlled by technology.
Yet we should know better, with the ever increasing levels of mental health issues we should be better.
“I’m fine”’should be banished from everyone’s vocabulary. “Are you ok” should be asked with truthful concern. We should listen deeply and we should take time to care.
Yes the world is a busy place, yet the viewing numbers of the last reality programme proves we have time. Yet it’s easier for us to invest in the loves and lives of those we don’t know because no effort is needed. So yes we have the time or can make time to check in on those that we know and should care better for.
So why don’t we ?
I know I need to do better, I need to reach out more, when a friend goes quiet just check in. But I also need to be honest to create a place when it’s safe to speak our truth.
To not hide behind the illusion that’s I’m ok when I’m not. Someone once told me that they couldn’t speak to me about a problem, they felt that my life as hard at it seems meant that they didn’t wish to put upon me. But also they felt ashamed because I was doing well in my journey how could they complain? This broke my heart, I am far from ok, sometimes I lie in bed and beg my mind to leave me alone. To just for a moment stop thinking, stop torturing me with agony of what ifs or what should be. I’m not ok and maybe if I’m more honest in my struggles and vulnerabilities it will allow the others the space to be transparent with theirs.
Hey, we can not be ok together.
I do not believe we were supposed to live this life alone, but alone it will be if we don’t let those we love know our hearts.
So here’s to being truthful, to banish “I’m fine” and to reach out.
I never imagined I would drive, I come from a family of HGV lorry drivers and after watching them manoeuvre those gigantic machines I simply thought“not me”. The responsibility, the awareness needed all seemed out of my grasp.
It’s easy isn’t it to tell yourself that you cannot do it. That it does not happen to people like you, it’s out of your reach, beyond you.
This is what I thought as I sat in the public library one day, no matter how many notebooks I filled with my stories, poems, songs holding a book I had written in my hand was beyond me. Seeing a book I had written on the bookstore shelf well that didn’t happen to people like me.
Well it did and it has, yesterday my first children’s book was released. I’ve got to hold my dream. I’ve overcome my fear of failure, my fear of not being good enough to hold my story in my hand. To allow the dream of my heart to be realised. My hope printed from my soul.
It’s strange as today feels like a game changer, just like the day I passed my driving test (not HGV’s) and the world became larger for me. Today the world feels a little clearer, my mind a little braver and my heart a little stronger.
No more telling myself what I cannot do or what shouldn’t happen to people like me. Im going to dream and dream big and drive forward with conviction, with belief.
Belief in me.
Joining in with five minute Friday
1. Write for five minutes on the word of the week. This is meant to be a free write, which means: no editing, no over-thinking, no worrying about perfect grammar or punctuation. Just write. Write, post then link up.