Need

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.

Intention

Day 2 of #hopewriterlife

Intention

intention

noun [ C or U ]

UK /ɪnˈten.ʃən/ US /ɪnˈten.ʃən/

B2

something that you want and plan to do:

[ + to infinitive ] It wasn’t my intention to

Intention something you want or plan?

Do you want to know a secret?

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.

Desperate

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.

Let’s banish “I’m fine”

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

Be grateful

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.

Let’s be better

Let’s do better

Let’s love better.

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

Gentle?

Oh my goodness when I read the word prompt for five minute Friday this week I just smiled at the irony, gentle on a day that was far from gentle for our saviour.

He was beaten

He was mocked

A crown of thorns placed on his head.

The nails hammered through his hands,

The spear pierced through his side.

Not gentle, not kind, not right.

Yet this man so gentle and kind bore this pain, bore this torture, died for us.

I struggle through Good Friday, I mean how can you find the words to honour this sacrifice. To breathe life into the holiness of the love Jesus had for me. I often find myself looking forward to Easter Sunday excited to celebrate the resurrection. Yet this time inbetween needs to be felt, this closed tomb needs to be understood.

How often in life do we focus on the good that’s coming. A journey is always about the destination, but is it? Shouldn’t we sometimes slow down and view the world that we pass As we start towards our end. Maybe we would see some wondrous sights or maybe not , yet to look is never a waste, to rush is to miss.

So as we sit in this in between time I often think of those that loved Jesus. How did they feel? Did they know without doubt that he would return? Did they trust? What would I have done, I mean I know I will be reunited with my daughter one day but I still grieve. This time in between feels hard. I know that come Sunday the tomb will be empty but this space is hard.

Yet I know without a doubt that I will hold my girl again.

Because of a gentle man who suffered a horrific death

because he loved me.

Jesus the gentle breath than fills my lungs with salvation. From nail pierced hands to my promise of eternity.

Not a gentle love, a saviours love.

Join in with five minute Friday. 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.

It’s not ok that our children died.

Often when we face a loss in our community of special needs parenting, our hearts break alongside those facing the pain. We emphasise with the anger and missing we feel the disbelief and sadness. Myself personally I ache for the pain I know those left behind will feel. Each new loss reopening a wound that is far from healed.

Yet one of the things I still do not understand about loss in the disability community is that from those outside of it, is the feeling that somehow it’s acceptable. That in some way it is less. The concept that a life lived with a disability is not as full as one without.

There is no denying that being part of the special needs community we face loss maybe more than most, the wider our community the wider amount of pain. But that’s our life, we choose to walk alongside one another through the good and the bad. We celebrate the achievements and too often we have to grieve the loss.

Yet often those outside the community do not understand our journey and more often than I would like, do not understand our joy.

Statements like “oh well she had been poorly for a while” “sometimes it’s for the best” or my favourite (irony) “God knows best”.

When Livvy died she had a devastating neurological condition. Her body faced so many obstacles, seizures, abnormal breathing, sometimes uncontrollable movements. Yes, to list her conditions it may seem dire. Yet what the reality was that yes she had this list of issues but what she also had was a life filled with love and laughter. She had a family that adored her, she had parents she wrapped around her fingers. Sisters she teased and played with. Teachers she adored, friends she loved. Her life was full of joy and mischief. She was not her list of conditions. Yet still when I speak of my missing, people speak of her with pity. When I speak of her loss, people speak with acceptance, as if her disability makes her death more ok.

Whilst I know this attitude is meant with kindness I need to share that it’s not. When someone who has a disability dies it’s not ok, it’s not even a little ok. It’s a heartbreaking, soul destroying grief.

You see people are not their disabilities they are simply people. A child with disabilities is simply a child.

So I beg of people, I ask desperately that when dealing with a grieving mother, a broken father a missing family, that before you speak of freedom from pain, limited lives or God’s choices, STOP. Whilst the lives lost may have seemed hard to you, or the disabilities overwhelming those grieving see the little boy whose eyes twinkled as he looked at them. The little girl whose smile lit up the room, their son, daughter, sister, brother. We don’t grieve the disability, we grieve the one we loved and their disability wasn’t what defined them. Our pain is not less and their death is not and never will be acceptable.

We love our nurses

Can I tell you something, it was something I knew before I had ever heard of Covid 19. It was something I was sure of before the nightly clapping, it was something I believed in before the rainbows flooded the country.

Nurses are incredible.

So many times I have cried on the shoulders of nurses.

So many times have my children been hugged and comforted by nurses.

Too many times has it been a nurse that translated between me and a Doctor.

Forever and some has a nurse supported me on my journey.

I don’t understand the government right now, the mighty warriors who held our frontline are being mocked and patronised. “It’s all we can give” being lost in falsehood contracts and unusable PPE.

Bonus’s for individuals who profiteered through a crisis. Yet a poor meal deal offer for those who gave it all.

Why we were being asked to stay home they were being asked to do more. Covered shifts, move wards, exhaustion, fear overcome by duty.

Yet even before the wards filled with the virus nurses stood by our sides. Yet our chosen government turns their backs once more.

Strikes, industrial action more and more damage to an already exhausted gift. NHS in crisis can only fall at the entrance of one door.

Please Prime minister you talk about the saviours as you laugh behind their backs. You want the country back to normal yet humiliate the builders.

We will not sacrifice the NHS at the alter of Capitalism. We will fight tooth and nail.

The fight that no one has the energy for yet one we cannot afford to lose. A country without the NHS is a country no one wants part of. A service without nurses cannot continue.

Mr Prime Minister, go back to the ward you were on. The ICU unit that healed you, go back now and stand before them with your soggy sandwich, packet of crisps and fizzy drink and you say thank you, thank you for my life and then hand them your measly 1% and ask yourself truly, is this enough.

It isn’t.

Holy cow it’s March

Well hello March, what happened to January and February? Oh that’s right Sara you got lost. Lost in sadness, lost in anxiety and lost in defeat.

2021 started wrong, I’m sorry but I survived 2020 by patiently waiting for it to end. Pretending that it’s ok, hiding in a false facade of a comradery of equal suffering. “We are all in this together” “if everyone looks out for another” “we can do this”.

What bull that was, whilst some were hosting garden parties or indoor raves I was still locked behind my door scared to breathe deep.

So 2021 you need to behave, I have no more inspiration for homeschooling. I don’t want to talk to my husband any more and as much as I love Daniel I need sleep and I really really want to hug my daughters.

I cannot pretend anymore and that’s ok but unfortunately in my brain it wasn’t. So January and February I did my familiar act I locked down. I couldn’t disguise my sadness any more so I hid. I found my anger at the injustice of the forgotten vulnerable had started to warp my life view, jealous of others park walks none the less. Shopping trips envied to the point of stupidness I mean who cares that Asda has a new bedding range.

I did it 2020 I survived you but 2021 you need to play fair.

I’m broken…

I’m not asking for a lot, I have no desire or money to travel (lockdown for foster carers didn’t fit the furlong scheme). Just to walk along a beach to feel the freezing cold of the British sea on my feet. To take Daniel to the local farm where he can indulge in his cow stalking behaviour to his hearts content. To eat in a restaurant where someone serves me and washes up.

I want to hold my daughters tight, to be there physically if they need me. To watch Daniel be held by those that love him as we repair his attachment bonds and remove his fear of rejection. To start his therapies again and to do all I can so he gets to live the fullest of lives.

I want so much to be there for my friends, to drink coffee, babysit whatever they need. To be able to hug them when they cry, to be able to listen without being out of reach behind a screen.

I want to people watch with joy again. To be able to see those around me without fear of infection.

I want to not feel so angry, so lost.

2020 I survived you, 2021 behave.