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.

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.

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.

What if you are wrong?

Right now I am tired, tired of the opinions of those who think they know best. Tired of armchair experts ripping apart years of work and dedication from scientists worldwide. Tired of hearing ‘Liberty over life’.

I guess you could say I’m tired.

The thing is it’s ok, it’s ok for you feel this way and to have this opinion, I celebrate free speech at its best. Still free speech doesn’t come without consequences and right now all I can see is free speech at its worst.

I was once told by a Doctor “what if”

I was apologising for being a little over anxious with Daniel. For getting him checked out a little early than needed. Only for the Doctor to put his hand on mine and say “what if”. What if you hadn’t of brought him in and it was that sodium issue you feared, what if those chest noises was pneumonia, what if, what if.

So right now everyone and their dog, parrot, chinchilla has their opinion on Covid 19, it’s a myth, a government conspiracy, something we just have to learn to live with. All things I definitely disagree with and to what I answer “what if”. Yet what is really bugging me now is the false propaganda of the vaccine “Beam me up Scotty” being only one of the few theories I’ve heard. I again question you “what if?

Now don’t get me wrong I’m not telling anyone they should get the vaccine, my personal opinion is ‘get in the line’ but my decision is mine and I was so grateful to receive mine a few weeks back. Yet if I am asked by another for advice I point them towards the experts, the scientific community who have dedicated their lives to the study of diseases etc. People who know their stuff. I’m not an expert.

Yet I am finding myself seeing so many people on forums, Facebook pages , seeing parents especially being attacked for their decision to vaccinate and want to get their child vaccinated. Again I cry out “what if”. What if the fear of your judgement stops that person getting vaccinated and they then pass the virus on to their family. What if Grandpa Joe cannot fight the virus, auntie Katie, cousin bill etc etc.

What if.

What if people start listening to the pseudo science of false theories and harmful articles spreading it to the extent that more lose their lives “what if”.

I love this world, our creative, imaginative, far reaching minds. The uniqueness of each of us is to be celebrated. Yet please, free speech is not free if it causes harm to others. I don’t challenge your opinions, they are yours to own what I do challenge is that before you spread them far and wide you ask yourself What if.

What if .

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?

Living to love

I wanted to write about this last week, explain what had happened with Daniel but for the first time in a long time I just cannot. I cannot find the words to describe the fear, the words needed to give light to the darkness.

Let’s just say I was scared, frightened to the point where I couldn’t breathe.

I’m so thankful for the outcome, thankful I got to bring my boy home but I think it’s going to take time to actually process this last week.

Everyone tells me how strong I am, how much I face yet they don’t seem to understand when I say I have no choice. You see loving someone doesn’t come with guarantees. No one promises you a life full of unicorns and balloons. You take a step in faith, in love.

When we adopted Daniel I knew I was opening myself up to fear. Embracing the unknown yet with the knowledge that he was extremely complex, that he was vulnerable.

Some people ask me why, yet why not? Just because I didn’t birth Daniel doesn’t make our bond any less strong. I do wonder if someone asks my friends who did birth they children “why they do it”. With Livvy everyone used to ask “how do you?” Not “why do you?”

He is my child, my son.

Love is a choice, loving my son is the best choice I’ve ever made.

So yes my heart is healing and fear is holding time but love, love is the greatest bond, the greatest emotion and the very best reason to be living.

Living to love.