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.

Grief

I am beginning to wonder if someone within five-minute Friday is reading my heart as the word choices over the last few weeks have cut close. At first, I feel shocked but then wonder if God is reminding me that hiding is not an option and that it’s also not healthy. How can we process emotions when we don’t acknowledge them? Yet ‘grief ‘I am not sure if this is an emotion that can be processed ,its definitely not one that we can work through, well its one I haven’t personally worked through and the end well I’ve come to the conclusion that the end of grief is heaven. 

November is one of the hardest months for me and this year has been no different, I have to face the anniversary of my daughter’s death but also this year has brought so much pain my heart aches just thinking about it. 

Yet I know grief isn’t just synonymous with death.

noun

keen mental suffering or distress over affliction or loss; sharp sorrow; painful regret.

a cause or occasion of keen distress or sorrow.

Right now, the world is lost in grief, many of us cannot see past the what should have been’s, the normal, the plans being cancelled, people we cannot visit and I know it’s hard. As one who has faced a lot of what should have beens’s I get it. I did not expect my child to be born with a severe neurological condition, I didn’t expect to not be able to travel due to illness, to spend birthdays and new year’s in hospital.

I did not expect to lose her.  

I have faced so many of what should have been’s. 

It’s hard. 

Yet sometimes “what is” can be rather special, 

No, I did not ever imagine having a child with a devastating condition, it never crossed my mind at any point. Yet she was one of the best things that life has ever blessed me with. I learned through her that life was to be lived for the moment that the reality is we are never promised a long duration, so we need to live in the present. We need to focus on the here and now and celebrate the moments. 

Expectations can be exciting, but they can also bring restriction. Sometimes we have to let go of what should be and celebrate the what is. 

Grief is hard and for me there is no earthly end, but I will never lose sight of the gift. 


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


― Jamie Anderson

If you are grieving now hold on to the why. The wonderful people you miss desperately but love so hard. 

Focusing on the blessings isn’t easy and grief sometimes become a curtain which hides the gifts from us. But try, try in this season to tear back the curtain and celebrate the moments that made the memories and appreciate the memories yet to be made. 

Seasons change.

“there is a time for everything

 and a season for every activity under the heavens”

Ecclesiastes 3:1 New International Version (NIV)

I have walked many seasons in my life, and I know one of the longest and hardest of these has been my season of grief.

From the time my daughter Livvy was diagnosed I have grieved for what should have been, the life she should have lived or it in reality the life I had expected, planned, wanted her to live. 

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Then when we lost her 11 years ago, I grieved for her physically, grieved for her missing, her smile, her touch and the blessing of her spirit.

My grief felt like darkness.  

My whole spirit crushed by the pain of missing. 

I didn’t understand the why and I was often angry screaming at the ‘why her.’

This was my season of darkness and no matter how hard I tried to pretend I wasn’t sure I would live a life with light anymore.

Yet Jesus knew. 

My dear friend sent me a link to Christian singer songwriter called Steven Curtis Chapman.  Steven and his wife lost their daughter the same year I lost Livvy. Through his grief he wrote and produced an album called Beauty will rise. This cd, these songs, the words broke through my darkness.  In the midst of my pain I could not see God in my Bible, the words lost as my tears blinded me from his love. Yet in these songs, in the lyrics, hope started to grow once again, and the promise that I could hear in the melody slowly healed my heart. 

One of the songs is called ‘Spring is coming ‘and this week as we have faced 11 years without our beautiful girl, I have held on tight to this. Not because I am waiting on the Spring though this cold weather is already getting to me, because I know the blessing of the new.  I have felt the new life burst inside of me. I give thanks and praise to the changing seasons and the love, the hope and the promise each one brings. 

So today I am sharing this with you, sharing my heart and my journey, because God has asked me to share my story. He wants all to know that he is the light in the darkness. 

“I am the light of the world. Whoever follows me will never walk in darkness, but will have the light of life.”

John 8:12 New International Version (NIV)

Jesus was and is my light. 

So, if any of you are now struggling in the darkness and if you are feeling the crushing weight of fear, doubt or anger, hold on to the fact that this time is a season and that seasons change. Life is a journey often full of pain and loss believe me when I say I know this but whatever you are facing, know that you are not alone, that Jesus walks beside you. 

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If you had asked me 11 years ago if I would know joy again, I would have said no easily, my heart was broken. I still miss Livvy so desperately and often still fall under the weight of grief but now my heart knows the promise, the promise that one day I will be reunited with her. Yet in this life whilst I walk it without her physically right now, I know that Jesus has great plans for me and joy it does come in the morning, not promising what morning but it does come. 

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So, I just want to remind you that whatever you are facing you are not alone. That you can do this and even in the crushing darkness there will be and always will be a light, the light of Jesus. 

How dare it

I tidied my bedroom today, a job I’ve been putting off for months maybe years. My bookcase was overflowing and my make up case was going wild.

I didn’t want to touch the bookcase as I knew it was full of memories and moments I couldn’t repeat. Full of bits and piece’s of my missing little girl.

As I started tidying up I felt extreme anger at the dust, I mean how dare it fall on her things. I know the fault is mine for not keeping on top of it, but common sense often doesn’t play a part in grief.

I remember films I’ve seen of rooms left untouched forgotten by the years, the only visitors being dust and decay.

How blooming dare it.

I wonder if my mind will ever become like the bookcase slowly building up with dust so I cannot see her, hold her memories.

How dare time go by, the days into the years, the years now into a decade.

Is time the dust of the moments?

I’ve cleaned and I’ve dusted and I’ve cried. The tears opening the rawness of the pain, the emptiness of the missing. If love could hold Livvy close she would be wrapped up now in my arms.

As I wipe I am reminded of the numerous times I cleaned those beautiful cheeks. I remember clearly brushing that wayward hair.

I remember,

I remember and I hold on tight to the sound of her laughter in my ears. The touch of her fingers in my mine.

I remember

The dust it may fall and the pages may curl but my heart holds her tight.

Time is not my enemy just the journey
towards my beautiful girl x

We need to remember what Livvy taught us.

I worry we are forgetting, not about Olivia herself but all that she taught us.

I can still see her in my mind clear as yesterday. Her blond hair that twirled between my fingers. Her cute mouth and the way it did it’s little Elvis curl.

I can hear her giggle at the silly things or the most incorrect moments.

Her teasing way towards her sisters, her daddy.

I can see it all and I’m so thankful for this but what she taught us is slipping through my fingers, through her Daddies fingers.

To make the moments matter.

This was what Livvy taught us, on the day of her diagnosis we realised that we didn’t have forever so we needed to focus, needed to revalue and we needed to make the moments matter.

We were never going to be wealthy enough for amazing trips but Livvy didn’t care less where she was as long as there was laughter in the air.

Give her a sea shore and splashing waves and she was content.

Give her a battered roe and couple of your chips and she was happy.

Give her your arms to snuggle in and she was in her moment.

Life has become a little forgetful as of late. The normal is invading into our moments a little more than I like. Laughter feels rationed and magical moments are becoming less.

I know we cannot live in a permanent state of magic but we do need a reminder of what Livvy taught us.

Daniel needs us to remember.

Yes money is tight and that always adds the extra weight upon anyone’s shoulders but money does not equate happiness and it doesn’t bring guarantees.

I want to remember the moments we shared.

I want to create new moments for Daniel.

Tropical hurricanes aside I want magical moments again. I want to laugh until I cannot breathe, dance in the rain, drink tea with friends whilst the night sky entertains us with star dances.

I want to throw Daniel into moments the Drs never imagined for him, defy odds and breathe life in deeply.

I want to remember what Livvy taught us and make her proud by being her best student.

I don’t want to forget, we all need not to forget.

Life is for living,

Living like Livvy.

I wish I had been there.

I read a post the other day describing the days of a premature baby in a neonatal unit and my heart broke. Not because Daniel was born at 26 weeks because my little fighter survived, but because I wasn’t by his side through it all.

How crazy is this that I’m torn inside by a grief, a guilt for a time I didn’t know. For a time when I didn’t know my boy. The idea of him facing what he did without me by his side breaks my heart.

The whole time before he came my son is one I cannot focus on. I cannot bare to think of the symphony of emotions he had to face alone.

I have read his medical file and my heart just tears, 26 operations before we met him. 26 anaesthetics, 26 procedures, 26 times I wasn’t by his side holding his hand.

I know it’s crazy and deep down I know it’s not my fault and I do just have to have trust in the journey but I honesty wish he hadn’t had to face one step without me.

I get frustrated when people tell me that he shouldn’t be as clingy as he is. I honestly ask them to walk his pathway and see if you didn’t want to hold on tight.

When the world has been full of procedures and strangers. Pain and suffering. When you cannot see who is picking you up tell me you wouldn’t hold on tight to the one you know, the ones whose arms to trust.

I’m so proud of this clingy I want my mom stage, because this means he knows I am always there. That in my arms he is safe.

I adore the way that when he is ill he only wants me it’s further testimony to our bond.

Mother and son.

I cannot change the past and that’s something I do have to let go. I’m just so thankful that he came to us and that his heart fitted perfectly inside mine.

The future isn’t mine to see and I will not make promises that I cannot guarantee but what I do know is that why my heart still beats I will be by his side, whenever he needs me that’s a promise.

Celebrating the gift of motherhood.

Mother’s day is a day of celebration, a day where we honour the bond of a mother and a child. The period of time you are a mother is irrelevant. Physical birthing isn’t a necessary. Motherhood is about loving someone more than yourself. Living and breathing for their dreams to come true.

I adore being a mother, from the moment I knew I was carrying my first child in my womb my heart has loved hard. I’ve made mistakes, I’ve messed up and I’m sure I still will but my children are my life, my world.

One of the hardest things I have faced as a mom is letting go, watching my children grow and flourish and become Independant and assured. Seeing them bravely love, suffer, face heartache and rejection. The overwhelming urge to take them away from painful situations, to stop them before they try. Yet as a mom I’ve had to let them be, to live is to learn.

I am a mom to four amazing daughters and one handsome son, each one so beautiful and incredible in their own right. Individual with their own needs, wishes and dreams.

My dearest Livvy is in heaven and whilst the veil of this lifetime separates us physically now. No time, space or worlds can separate the love of this Mom from her daughter. My soul craves for my girl, my arms ache to hold her. My heart will be forever missing a piece, beating with a broken melody.

Yet I would do it all again in a heartbeat.

Mother’s Day is a celebration and I have a lot to be thankful for. So I’m going to hold on tight to the memories, run forward widely into the future with the knowledge that the greatest role I get to live, is that of a mother.

How blessed am I?