My son wasn’t a acceptable loss.

As always here on the internet we come across and connect with some amazing, inspiring people but also some truly awful trolls that need to return under the bridge they came from.

These last months I’ve been very open in my grief, transparent and vulnerable, to be honest the only way I know how to be. Yet in my vulnerability I have come across a few that just don’t or choose not to get it. They seem to find it acceptable that Daniel died of Covid because he had complex needs. He is one of the few they believe are “acceptable losses”. One going as far to say he was going to die anyway, I mean how dare they ! There is nothing ok with Daniel’s death, there is definitely nothing acceptable about him catching Covid through the ignorance of others. His death is not validated by the percentages. His death is heartbreaking devastating and I and many others miss him desperately.

Disability does not mean less and in a world that supposed to be one of progression this archaic belief is shocking and one that’s so ignorant.

What if those who have trolled me these last few weeks take a drive out and end up in an accident and find themselves disabled, do they at this point become less? Would it be then acceptable for them to lose their lives to covid? Of course not, their value doesn’t change by the ability of their bodies.

Yet I wish that these beliefs were only those of the under bridge ugly society but the reality is there are not. Disability is still seen in a negative way, a less way. Parents fighting for their children to get the same opportunities as their peers, equal opportunities in career development and growth. Support, care systems all so lacking and don’t get me started on the fact that equipment and aids that would make a difference to a persons life are classed as not needed, beyond the basic requirements or my favourite (not) out of budget. We live in a country where is ok for us to fund the second home of our politicians yet we have people unable to leave their houses due to a much needed ramp being beyond budget for this year. Human beings being left in pain using ill fitted or outgrown equipment being told of a two year waiting list. Yes disability is seen as less, people with disabilities are not valued as they should be.

Equality feels like a myth.

So I guess I shouldn’t be surprised that some keyboard menace decided to break my heart with their apathy. How they could chose to say the death of a seven year old beautiful boy was acceptable.

Still what scares me more is this belief that Covid only kills the vulnerable, those with underlying conditions. The numbers show different, the lives lost show different, marathon runners, sportsman, dancers, armed forces personnel all have lost their lives to the evil of Covid. Until this recognition hits home and people understand that Covid isn’t discriminative, it doesn’t care who it kills the number will continue to rise and hearts will continue to be broken.

As for my heart well pieces of it are in heaven waiting for me. Until then I will continue to advocate and campaign for a world where people are valued equally. Where disability is seen as difference ( I mean who wants to be the same ) but not a burden, not less. As for the trolls I know they won’t ever disappear as the world is full of bitter ignorant people but I can choose to hold on to the fact that I am so blessed, so incredibly lucky that I get to call Daniel my son. I will always miss him desperately because he did and does matter.

In the brokenness

I’ve never been one to follow the calendar. I often don’t know what day of the week it is let alone the date, this has especially been the case in the last two years due to shielding. I mean who cares what the date is, we aren’t going anywhere. Yet since Daniels death I have found myself coming slightly obsessed.

When April turned to May my heart was aching, a new month that Daniel won’t be part of and today we begin another month that won’t hold him in it, it’s so very hard and feels so wrong.

How do I do this life without my beautiful boy? I really feel the need for direction. Nothing makes sense , the things I loved are now too different without my son. Alan suggested I join him in keeping the house tidy but even thinking about it makes me tired. I mean we are just cleaning up our own things when I’m so used to changing beds because Daniel had peed on the sheets, often literally after I had just changed his pad. That boy loved a clean nappy. I should be cleaning up milk when I forgotten to clamp the tube. Weighing pads, chasing prescriptions and so much more. What i am not doing makes what I should be doing feel so out of reach.

I know it’s going to take time and it should, shouldn’t it. You don’t move on from losing your heart in a day, week, lifetime. I’m just so lost it’s crazy, I think that may be my forever statement. “I’m lost.” Then I think of one of Daniels favourite hymns “ i was lost but now I am found” maybe I will be found or find myself again.

Who knows?

Alan and I are struggling so scared about the future. It’s hard trying to make a life you so didn’t want. Everything is different, everything is hard, everything is missing Daniel. People keep telling us of the holidays we can now take, the places we can now visit, the freedom we now have. I know they mean well but this so called freedom came a high cost. Plus I never felt so free when I got to love on Daniel.

I remember so vividly when we lost our beautiful Livvy my anger, I was so angry that the world continued to turn without her in it. I feel that same anger with Daniel but with an extra element of bitterness, we lost him to what we tried so hard to protect him from. His life was stole by a virus the world wants to forget. He is just one in million statistics that we just have to accept. It’s shocking, it’s cruel and it’s so very wrong.

I’m never going to be the same person again and I don’t think Alan will either. Sometimes the spotlight is too powerful to not see the truth. I don’t want to stay bitter but the brokenness of my heart allows it to creep in.

My wonderful friend reminded me at Daniels celebration of the Japanese art of embracing brokenness, Kintsugi. Kintsugi teaches you that your broken places make you stronger and better than ever before. When you think you are broken, you can pick up the pieces, put them back together, and learn to embrace the cracks. Kintsugi teaches you that your broken places make you stronger and better than ever before. She reminded me that I had once before filled my brokenness with gold and that I will do again.

I’m beginning to think I may end up with a bowl full more of gold than china but that’s ok every crack, every bit of brokenness was made because I was blessed enough to have loved and to be loved.

To be so very loved.

Dear Daniel

I did it again, I pressed my phone to call your Daddy to ask him if he had put you on your milk yet. Why is my body still waking me a month after we have lost you? Why is my normal no longer my own?

Oh Daniel there are not enough words in the languages of the world to explain how much I’m missing you. Even now as I lie here unable to sleep I know I haven’t accepted the fact that you have gone. I’m a mess, a complete utter mess and for once in my life I do not care. My mind isn’t full of wondering, afraid if others are judging me in my sorrow, I don’t give a monkeys it hurts, it’s agony.

The house still echoes of you, our home, your home, your scent still lingers on the air. I’m still using your shampoo as a body wash so I can smell your sweet scent of strawberries all around me. It’s running out, would it be weird to buy it again? Maybe I will search for an actual strawberry scented body wash. Maybe that’s a compromise. How I hate that word right now “compromise” it feels that’s all I am having to do. Grieve whilst trying to move forward. Rest whilst job hunting, always having to give a little when I really haven’t got a lot left anymore.

I don’t have you anymore.

Oh Danny, I know they will call me soon to collect your equipment and whilst I know you are free from the disabilities that made you need them, letting them go is part of an acceptance I have yet to reach. I’m scared of the emptiness their return will leave behind. I know I have to do it at some point, there is so much to sort out. Your wardrobe is full of new summer clothes you have yet to wear. No sorry clothes you will never wear. This sucks!

Your toy box is still in the living room, your book case full to the brim. Talking of books the new book written by Jacqueline Wilson came today, it shocked my heart. I had forgotten that we had put it on pre-order, “ A new adventure of the Faraway tree” do you think Moonface will still be in it ,maybe Silky too. We loved reading the original written by Enid Blyton together, I’m sure we would have loved this one too. Maybe when I get you home I will read to you. Is that a strange thing to do? Maybe I will just curl up under your blanket with Edgar and read it. Yes I’m going to cry, come on everything is making me cry. Do you know how hard losing you has been?

I guess I need to try and sleep, the irony is that now I have no one waking me at every two hours but I’m sleeping less than ever. I am hiding in my bedroom more than I should be, I’m not sleeping I’m just pretending you are downstairs with your Daddy. I know it’s not helping but let’s be honest nothing does.

Hey beautiful boy, I’m trying I promise I am. Giving up would be easy but I know you and Livvy didn’t teach me that way. Your both fought to live; I promise I will try to honour that. You guys need to help though, sprinkle me with some heart healing dust from heaven, how I wish that was a real thing. I remind myself that I “grieve with Hope” well I’m working on the Hope part, but I’ve got the grieving down perfect.

Oh my gorgeous handsome son, missing you is so so hard. Just to hold your hand in mine once more, yet I know once more is never enough, would never be enough.

So it’s been a month my dear boy, one whole month since your took your last breathe this side of heaven as you lay in my arms. As I held your body close to mine your spirit ran to Jesus.

Until my time comes, until I can run to you and Livvy.

I will miss you

Forever heartbroken

Your Mommy

Xxxx

My beautiful boy xx

Dear Ed

Dear Ed

I have watched your programme on the social care system in tears not because of the stories you shared (although they are heartbreaking) but because this is truly only the tip of the iceberg. Carers are the backbone of this country holding the weight of the social care crisis upon them, yet how long can they continue to do so before they break, the whole system is hurting.

Whilst I really hope and pray your programme brings awareness to those in power I do feel that your journey cannot end here. To champion carers I ask you to please champion us all, so I invite you to come meet,visit, grab a cuppa with parent carers of children with disabilities like myself. Those that also care 24 hours a day with little respite or support and those who battle daily for our children to be seen worthy by our current government.

Let me introduce you to my son Daniel, he is a 7 year old bundle of love. He is cheeky, full of life and loves animals and his favourite person is Peter Wright the Yorkshire vet and I’m kind of ok with that. Yet to those in power he is a burden on society, when I ask for support I’m told priorities have to be made, when I ask for his basic needs to be met I’m told of a policy that doesn’t allow for it. This last year the word Covid could have be easily added to the dictionary with the definition “useful excuse “. I am not at all minimising the impact of the pandemic I like so many others have lost loved ones but when the word is used as an excuse I find it insulting and shameful. These issues were there before the pandemic and Covid has literally just been the light that has shined upon them, bringing them out of the shadows, yet it’s being used as an excuse to hide behind.

Parent carers are at the point of being broken, exhausted with the constant battling for services, the constant begging for support. Drained by the daily strain of caring, isolated in a world many cannot understand or even want to. Parents wanting to just be Mom and Dad instead of nurse, carer, physio and so much more. Our children have been forgotten, seen as not worthy in all areas including the Covid recovery plan. My son has been out of education since March of last year, his emotional health has been hit so hard by the isolation that he is now so scared that everyone is going to leave him that he panics if he cannot hear us. This panic has seen him hospitalised, panic attacks so severe that Drs nearly ventilated him before deciding to sedate him instead. Should this happen to any 7 year old?

My son is being judged by his disabilities and conditions rather than by his spirit and determination. Assuming disability means a lack of understanding, judging communication by the lack of words.

Personally I’m exhausted waiting on a GP appointment to finally seek help for the pain that I am in. I’ve had one full nights sleep since 2016 but I cannot find carers to take on my direct payment hours, the level of his complexities scary in comparison to the wage I can offer. My husband and I had been out of work since the beginning of pandemic, we are foster carers but shielding doesn’t allow this to happen. We are lost both physically, emotionally and financially.

Yet I’m faced by comments like “well you are loaded” it’s seems my child’s disability payment is vast in the eyes of others , oh and don’t forget our free van, what a lucky boy my son is, ignorance feeding the isolation.

Yet what happens if I break who will then care for my child? What if I get sick, this fear has eaten away at me for the last 18 months the little sleep I get broken by this anxiety. Even now I am scared to go anywhere for the fear of bringing the virus home to Daniel. We celebrated our 25th wedding anniversary at the beginning of this month at a McDonald’s takeaway, what rock an roll lives we lead.

Yet this situation hasn’t just arisen due to the pandemic, this as you highlighted in your programme is partly due to the reduction in local authorities budgets which has dramatically hit families like mine. It is also due to the lack of respect for the job of a carer both paid or unpaid, the dismissing of what is a skilled and demanding role. Also things like respite or home care is a not a priority to most and doesn’t win votes, well that’s until they need it of course.

Our children, are the forgotten ones, the pandemic began and our doors closed and services disappeared. Children waiting for equipment for far too long, wheelchairs to small yet the only way a child can travel. Isolating and heartbreaking.

The void of this pandemic has been filled by some incredible charities but is it their place to protect the vulnerable or should that be the role of our government?

I hope I am preaching to the converted, your empathy and compassion shown on this programme made me wish your were back in politics. Maybe we need more politicians and policy makers to go on a journey like yours.

All I ask is that this programme is not the end of your discovery into the world of social care, that you would consider coming and meeting with families like mine, with the charities advocating for us.

The government says “every child matters” help me and many others make sure our child matters.

Daniel matters.

Then there was silence

I want my son to matter. I want him to be spoken about.

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.

  1. Prioritise the needs of disabled children and their families within covid recovery plans and programmes.
  2. Tackle the backlog in assessments and ensure that children’s needs are re-assessed in light of missed support during the pandemic.
  3. Ensure the right support is in place for all children and families, including education, health (including mental health), therapies and equipment.
  4. 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.
  5. 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.

My son matters, hear him.

Strong

“Oh she does so well”

“I don’t know how she does it.”

“She is always in control.”

“She is so strong.”

These words are often spoken over me, as a mom who has faced loss then chose to adopt a child with complex needs people seem to think I’m some kind of superwoman, a special heart, so strong. 

I may be all of those things at times but I have allowed these words to stop me opening up, fearful that in my honesty people would see weakness.  

You see there is beauty in strength but choosing to be vulnerable is one of the scariest things we can do. Allowing our hearts to be transparent, now thats hard. 

Yet I often think strength and vulnerability are the same thing. 

Some days I feel far from strong, I find myself hiding in the bathroom as I let the tears fall. I feel the nausea in my stomach as my legs go from underneath me. 

I feel all of this and in this I am strong. 

When my heart beats so rapidly in my chest and I can barely catch a breath, I am strong. 

In the panic and fear I feel, I am strong. 

Yet I still find myself hiding for fear of judgement, fear of weakness. 

How wrong am I? 

You see life is going to be hard, we were never promised anything different but its in the showing up I realise my strength. 

Yes, adoption is hard, but I show up

Grieving is hard, but I show up

Being a medical mama is hard but I show up

Being exhausted from caring is hard, but I show up. 

Being lost in the anxiety is hard but still, I show up. 

I am strong, I am vulnerable, I am a glorious mess of all these emotions. 

Strength isn’t in not breaking, it’s allowing yourself to fall apart in love.

And then showing up. 

I am no longer going to hide under the words spoken over me but I do choose to stop them allowing myself to be honest. 

I refuse to allow the fear of being weak stop me from being vulnerable. 

My weakness is my strength 

In my fear I am strong. 

I show up. 

Writing again in the Five minute Friday link up.

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. 

Why did you want to foster?

I asked on my socials for some ideas of blogs that people would like to me to write and one question asked was “Why did you want to foster? “

So here goes

“Why did you want to foster? “

I think I was 12 years old or maybe 13 as we have moved up into the bigger school and there was a boy in my year who was in my thoughts then a ‘nightmare.’ He was always arguing with the teachers, always late and often coming to school dirty. Then one day he just seemed to stop coming to school, just disappeared until a few weeks later he returned but you could barely recognise him, he was so different, in clothes that fit, clean and seemed so happy and his behaviour in school was really improved. He was trying hard in lessons and actually listening to the teachers. About a week after he had returned, we ended up being partnered up and being the inquisitive (nosey) person I was, I asked him what was different, why he was different? He then told me that he had been moved out of his family home into foster care and whilst he missed his family his life had changed a lot, his foster carers listened to him, cared for him and were worried about him. He told me “That he felt wanted for the first time ever”. This obviously shocked me, I had no idea what his life had been like but the difference in him stayed with me for a long time and as I go older the desire to foster was grown in my heart. I remember telling my husband when I met him, I wanted 6 children and to adopt and foster many more and bless him he stayed around and came along for the ride. 

Obviously 12-year-old me wasn’t going to become a foster carer but after we got married Alan and I enquired into the process and after discussions and Olivia’s diagnosis we decided that maybe when the girls were older, we could foster alongside caring for Livvy. As you all know life did not go as I had planned, in November 2008 we lost Olivia to a rare virus which she had contracted due to her diagnosis of Rett Syndrome. Our hearts were broken and in all honesty our minds were literally trying to make it to the next day. 

Olivia died on November 7th and for what seemed an ironic moment that was the year I had finally got myself organised for Christmas so there sitting in my wardrobe haunting me was the Christmas presents I had brought for my beautiful girl that I was never going to get to give. Practically I knew I could return the gifts for a refund, but I just couldn’t, I had brought these as a gift, so I needed to do that somehow, gift them. So, after an internet search we found our local children’s home and called for a visit to drop off the gifts. 

Turning up at the children’s home was strange, obviously we were still in the midst of grief, but I just felt so sad that homes like this had to exist. I was pleasantly surprised when we got inside and shocked that the home was actually for children with disabilities, I hadn’t realised that when we called. We chatted for a little time with the manager who explained all the fantastic things the children did and what they had achieved but I asked the question why these children weren’t in fostering placements etc. The reason was simply because they struggled to get people to foster children with disabilities, they are fearful which we understood completely it is far from an easy but yet reason this stayed with me, stayed with us. When we returned home, we spoke to our girls about how we had taken Livvy’s presents to the home and how lovely the children were. Our girls’ questions were like ours, “why are they there” “why doesn’t anyone foster them” and the question that came back to a few days later “why don’t we foster them?”  You see fostering had been a family discussion for many years, our girls always knew our hearts and here they were asking us to live our hearts. 

Well let’s be realistic here I was in pain, I was in pain like nothing I had every felt before. I missed Livvy with a desperation I did not know I had. I felt lost, I felt empty. My days stretched endlessly before me, caring for Livvy had been a 24-hour job now I was redundant and just did not know what to do with myself. Yet regardless of my desire to love on those children that needed it, my head wasn’t there. I had to make sure my decision, our decision was made for the right reasons not just to fill an emptiness which that let’s be honest could never be filled. But the desire didn’t fade in fact it began to burn brighter in my soul and my girls well they never let it drop, they came up with a campaign to get us at least enquire about it. So, enquire we did, enquiry led to interviews, interviews led to an application and application led to panel and panel led to approval. 

In September 2009 we were approved as foster carers and it was a fantastic day, the joy of knowing we were going to make a difference really blessed our hearts, yet it was not one which we could really focus on as the very next day we were on our way to meet a beautiful boy that captured our hearts, our very first placement. 

Over the last 12 years we have only had 4 placements as we foster long term and whilst I have to say fostering is a profession it has allowed me to hold hearts in mine. The joy we as a family get from watching a child lead a fulfilled happy life knows no boundaries.  It has not been an easy journey, we have faced pain, a lot of anguish and often felt that maybe it is all too much, but the children, the children whose lives we get to change are worth it. The children we get to love upon are so worth it. 

It is so worth it. 

  • If there is any other subject you want me to cover here on the blog please get in touch.
  • @rebelwithkindness@gmail.com

The joy of social media comments…

Sometimes social media can be a wonderful place to be, together we can celebrate and we can support one another. But at times it can feel like a place of oppression, ignorance and sometimes damn right hatefulness. Whilst I have to accept that everyone is entitled to an opinion I also have the right to disagree with it.

So I decided to share some of the “wonderful” comments I have received and my responses, enjoy….

Why are you always moaning about something? 

This is a comment I have received regarding my advocacy for children with disabilities and the governments lack of consideration of them in the schools recovery plan. 

Well let me just start by saying I am not moaning, there is a difference between standing up for your rights and moaning. When my child and others like him are being ignored by a government that is supposed to represent them I will speak up. When a government tells you that “every child matters” yet treats mine like a second class citizen I will speak up. Believe me when I tell you I wish all I had to worry about was the football score (Come on England), but my sons physical and mental health matter.

“We deserve our freedom” 

Oh it’s freedom you want,  yet yesterday our government passed a bill that robs us of our right to protest, but its ok because you can go dance the night away in a nightclub. Honestly please work out what freedom actually means before you celebrate it. 

“It’s not our fault you have a disabled child”

First up my child is not a fault he is a gorgeous amazing young man that overcomes so much. It’s no ones fault he has these disabilities just as you wouldn’t blame someone who has cancer or other illnesses, fault is not the issue. 

What is the issue is the discrimination he has to face due to people who believe he is faulty. The ignorant, the misinformed and mostly the selfish who only care about themselves and a current government who sees no value in those not earning in the top 10%.

“The NHS has to cope it gets enough money” 

I cannot believe this comment, the NHS is one of the most underfunded organisations in our country yet one if not the most valuable. The fact that the NHS is struggling is not due to the dedication and hard work of those that work within it but the systemic underfunding and disrespect and desire to privatise by those in power. Our NHS is full of wonderful people our Drs and Nurses, NHS professionals should be held high in respect not treated like casualties of war. 

“Maybe you should just send him away like they used too”.

How to reply to this one without swearing is hard, personally I know where I would like to send the commenter. Yet I’ve decided that someone who comments like this deserves pity not anger. I am so sorry your life is so pitiful that you cannot see the joy in mine. I pity that you haven’t found a love like I have for my son, that you cannot know the joy your life can be filled with.

Daniel is a blessing in my life that I am so thankful for. I will continue to advocate, shout, scream for as long as I need to get him what he deserves. I will exhaust myself if needed to give him a life that is happy and content and I will love on him with every breath I have. 

Children, adults with disabilities are not a burden to society they are human beings just like everyone else but they face discrimination and ignorance daily. This is where the issue lies in those that don’t or who choose not to value all people. 

As for social media I will continue to use it, I refuse to let a few take away from the overall good that I take from the connections I make on line but if you do choose to comment like this on my posts I will challenge. No one and I mean no one has the right to disvalue my son and believe me if you try you will meet mama bear in all her ferociousness.

My Joy xxx

Mother’s Day love

Mother’s Day, a day where we come together to celebrate all things that are Mom in whatever form that comes, stepmoms, adopted moms, grandparents being mom and so many more.

Being a mom is one of the hardest jobs in the world. The exhaustion of pregnancy, the labour of delivery, feeding, sleepless nights and so much more but yet it’s often the most rewarding role we will ever get to hold.

It’s tough and this last year has been a real struggle , ‘wow’ is pretty much all I can say about the last 12 months. From home schooling to the deep pit of fear that has been in your stomach since the words Covid 19 were first spoken, it’s been a year.

Still if I wish to challenge all moms a little now in fact probably all parents regardless of gender. What do you think is the one thing that is the hardest to cope with when being a parent?

Exhaustion, worry, finances,

Shall I share what I have placed on my heart this week. What God has wanted me to share with you all.

The hardest thing about being a parent

Expectations

These pesky little things that penetrate our minds and hearts.

I should be

I could be

If only

All turn into

I failed

I’m useless

I’m letting them down.

Now I’m coming to you as a mom of a five so a little experience here and also as professional of therapeutic childcare and I just want to state something here and I really want you to hear me.

You are enough

You are enough.

Our children enter this world with only a few needs, to be fed, to be warm and to be loved. Speaking confidently right now I am sure that each of your children are having those needs met. They are either grown and off living lives that you have encouraged and nurtured. They also could be there in your arms snuggling tight or even kicking out in your precious womb. They could be causing complete mayhem running around the house but all done in the knowledge that ‘they are loved’.

You are enough.

Yet we only have to look back the last 12 months and the changes this virus has brought into our lives. Homeschooling, isolation, exhaustion, fear. How many of use have felt lost, that they are failing?

My hands are right up in the air, me me.

I have watched social media posts of moms with beautiful converted classrooms with their children willingly working away. Houses spotless, make up perfect and I’ve literally cried. I have cried as Daniels homeschooling paperwork fell off the printer for the 15th time, cried as he completely ignored me as I tried to encourage him to work, sobbed at the state of my house and as for being perfectly made up, well I’ve had a shower and I’m saying Amen to that.

You see I couldn’t reach the expectations I had put upon myself and that’s ok. Because Covid 19 or not, being a mom is hard.

We mess up, we lose our temper and we suck at patience some days. Because motherhood didn’t come with super hero powers just the responsibility.

Anyway where am I going with this, well I’m leading to something I have personally took a long time to learn.

You don’t have to do this life alone.

As friends and family we are there to walk alongside one another. Reach out to friends, not only those at your stage at life. We have a wide breathe of generational wisdom to tap into.

But most importantly

Reach up, reach out to Jesus and ask him to walk alongside you. Ask for wisdom, hope and a big one for me, for patience.

Ask him to free you from the lies of the enemy that you are not enough. Free you from the untruth binding of expectations. To be beside you as you raise the next generation and to guide you as you walk this pathway of parenthood.

I ask you to look now at your child or if they are not with you bring them into your mind. As your heart swells of the love you feel for them as the love you have warms you to your very core, I want you remember.

I want you to remember

“We love because he first loved us.”
1 John 4:19

He loved us first,

He loved us first.

Remember that Jesus loves us as we love our children, that warmth you feel for your children he feels for you. He loves you to your very core.

and I want you to say this loud

“we are enough. “

I am enough.

Let’s be the friend we all need.

Over the last few weeks on social media there has been a lot of conversation about the way we talk and represent our children with disabilities. Some I have agreed with and some I haven’t. Yet I have avoided entering into the conversation as its been rather fractious and in all honesty I’m been overwhelmed by just doing life. Yet another message I’ve received today has made me feel like I need to speak up. Because when a point of view or a fear of being wrong stops people from asking for support, stops people reaching out for help, well in my eyes that’s a failing. We cannot educate or make real change in an atmosphere of fear. When the anxiety of being judged stops you from asking questions you are actively stopping progress and development.

Firstly, I want to say that being any kind of parent is hard and I can guarantee that a perfect parent does not exist. Yet for the most of us our children are our world and we wake up each day trying our best to love them and raise them to be decent humans.

Being a parent of a child who has disabilities is all this and more. Beyond typical parenting we often have to become medical experts, voices and advocates for our children.

So secondly, please be kind to yourself, life is a journey of learning. How boring would it be if we all knew everything, though believe me I am beginning to believe that some seem to think that they do.

Thirdly I just want to share my opinion, my own thoughts, maybe not unique to me but honestly it is coming to a point that I do feel that my posts need to have this disclaimer.

Anyhow I’ve had the gift of parenting a child with disabilities in two different decades and I do feel this gives me a perception of change.

When Livvy was born in 1999 disability was still very much a hush hush pity situation. The number of times someone would apologise for my child to me was appalling. You see social media wasn’t a massive thing in my world and actually it was rare to come across an image of anyone with a disability. If it was it was often a portray of limitations for fundraising etc. This made my world small, there wasn’t anyone I could celebrate my child with, in fact I think many would have preferred if I hid her away. No one talked about what she could do always what she could not.

Limitations not achievements.

This simply sucked and this was the reason I actually first started on social media in hope of changing the narrative. My daughter was a beautiful, inspiring, intelligent, amazing girl and I wanted to share and celebrate all her achievements just like I did with her sisters. So that’s what I did and slowly and surely the conversations around Olivia began to change. I stopped the pity party being the narrative of her life. Unfortunately, Livvy passed away when she 9 and a half but when we share memories of who she was they are joy filled, adventure packed, flirting moments of a life that was such a gift, such a blessing.

Still it was hard and it was a struggle and I often felt extremely lonely. I did have to hide the pain, exhaustion to keep the true joy of Livvy. It was rather a one-dimension conversation, I couldn’t risk being open in case the pity party started again.

Fast forward a decade and a bit I am now parenting Daniel in a world where yes discrimination still very much exists but it is definitely not as lonely. I love that my social media is full of children being celebrated for their differences. That disabilities are not being hushed away in a corner hiding, shame filled world anymore. That I can share a photo of a Daniel and my comments received are full of joy and celebration and the ” oh isn’t it a shame” mentality is leaving the framework of acceptance.

Yet what I really love is the community of people who reach out to love and encourage one another. Parenting is hard but fellowship and having a squad of cheerleaders chanting in support makes it a lot easier and a lot less isolating.

So where am I going with all this?

The fact that the world is more inclusive is a fantastic thing, whilst there is a long way to go for full equality believe me, I’ve seen a lot of change in the last decade. Advocating for our children is definitely what we should be doing yes the conversations regarding disabilities should be changing. People are not their syndromes, conditions or abilities. They are their hearts and minds. Yet let’s not allow this desire for equality stop the support that we give one another. Let’s not strive so much for correct terminology that we lose hearts.

The reason I have written this is because over the last few weeks I have been contacted by parents of children with disabilities who are scared to share. One had shared a family photo with a caption that caused her backlash, there was no reason. It was another’s need to educate that distracted from the truth. The photo shared was a family filled with love and laughter. Their children were all together enjoying life, making memories. That one parent is now scared to post again. Her words to me were “it feels like whatever caption I write would be wrong. I need this space to share my life, I accept the comments from people who don’t get it, but now from those who should has made me feel really low”.

Another parent asked me how she should word a post asking for some advice as she had seen others face criticism for what one had said “degrading her child”. Yet the thing is who else can she ask? It wasn’t degrading it was sharing reality in hope of advice.

You see those that live in the disability community we do have a lot to learn but our mess ups are based in inexperience, lack of knowledge and in my case often life fatigue. But we are and always will be our children’s greatest cheerleaders. We love and cherish the very bones of our babies. So, as it all forms of parenting we will screw up, but for the most part it is done with love. If our children are cross or annoyed with us when they are older, we can remind them of this and that as human beings we live to learn and as they mature I hope they realise that parenting isn’t easy and cut us some slack.

Yet as a community we need to be careful, I’m all for progression and I strive for equality for all but let’s not lose what’s special about this world we live in. Let’s love one another, support one another and be a safe place for all those trying their best in a world they wasn’t expecting. My Grandad often said “be the friend you need”.

Let’s be the friend we all need in this wonderful totally unplanned life.