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.

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.

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.

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?

A date I didn’t want in my diary.

When your child is born your mind is full of the moments that are coming. The special dates that will fill your calendar. You start planning for the celebrations, their first birthday, their christening, their first day at school. Your mind races forward into their future, will they fall in love, will they be happy? So many will they be’s just as it should be, yet no parents expects to add, when will I lose them? How do you add how to plan their funeral to this future planning list?

Yet when your child is born with complex needs these thoughts invade your mind even when you try hard not to allow them. You live in a constant battle between hope and fear.

When we were told by Livvy’s consultant that he couldn’t promise us forever our minds went to places no parent should ever have to go.

When we lost her, another date appeared in our diary. Not one of celebration but one of brokenness.

We do mark the day we lost Livvy yet I know others that don’t, they don’t want to dwell on the day they lost their child and I get that. Yet for me personally it would always be the elephant in the room, the day my heart broke into pieces.

We take Livvy flowers and decorate her grave, not in celebration but in appreciation. Thankful for the gift of being her Mama, for the wonderful nine and half years she blessed this world.

It may seem strange to some but the day we lost her is a day I have to acknowledge, an anniversary I have to remember. I have to allow my heart the space to break and my mind to grieve. It’s a day where I can admit that life sucks without her and I’m still annoyed the world keeps on turning.

It’s also a day where I remind myself how lucky I was to have her and how my journey isn’t finished. It’s a day I love harder on her sisters, her new brother and of course her Daddy. I hold on to the gift of life and the memories we have and those we have still to make. Make plans for magic moments to come. Places to visit, friends to hug.

Yet the only thing I can guarantee about this day is that I have no idea how I will feel and that’s perfectly ok. It’s a day I don’t have to enjoy, have to make special it’s a day I just have to be. To be whatever my heart needs it to be.

Whatever we need it to be x

Still we fight

Today is the end of Rett syndrome awareness month. Yet for so many Rett syndrome is something they live with at all times.

Rett Syndrome is in their lives forever.

After losing Livvy, I guess I could have walked away from Rett syndrome but the impact of this devastating syndrome would still haunt me. I couldn’t hide from Rett syndrome it had robbed me of my daughter. I couldn’t avoid Rett Syndrome because it still tortures so many that I love.

Right now in this world too many girls and boys are losing their battle to Rett syndrome. Right now too many are fighting hard against Rett Syndrome and right now too many tears are falling for Rett syndrome, missed moments, broken hearts and painful memories all at the feet of this evil condition.

I’m often asked why I still fight for awareness and for a cure for this devastating condition. Why I still allow myself to feel pain because of Rett Syndrome and wouldn’t it be easier to walk away from the community that I don’t have to belong to anymore?

I’ve said it before and will say it again, my fight isn’t over yet. I will fight until one day there is a cure for Rett Syndrome, it’s as simple as that.

Yes; I lost Livvy to this evil and like many who have lost a child I want to attack what killed her. I want to personally wipe Rett Syndrome from the face of this earth. I want no child’s body to broken by this condition ever again. I want no other parent to have to cry themselves to sleep after watching their child suffer at the hands of this evil and more than anything I want no other parent to face the pain, the torture of losing a child to Rett Syndrome.

But mostly I fight for the ones I love, for Brooklyn, for Grace , for Sophia, for Charlie, for Amber, for Estelle, for Beth,for Olivia and for every child that has the Rett syndrome diagnosis.

I fight for them.

I fight for my Livvy, because she would want me to fight to stop her friends from suffering, for their mommies and daddies to not live in fear, for their siblings not to ever have to say “my sister died” for no one to have to face the pain of loss again due to Rett Syndrome.

Part of me wishes desperately that I could live in a world that never had to hear the words Rett Syndrome again, but it would be like “he who should not be named” of Harry Potter, it’s evil would grow and grow in the darkness.

So no I cannot hide away until Rett Syndrome is brought out of the shadows, until everyone knows it’s name. Until funding is given and medical research is made, until a cure is found.

Until that day, we fight.

I fight.

Walking in her footprints.

We have just been away for a few days, a holiday with just Daniel, myself and Alan. It literally was a comedy of errors. Firstly I was supposed to meet up with the gorgeous Danielle and her beautiful daughter Evie but its seems there is a few hundred miles between Twynn and Towyn whoops. We were supposed to meet a family we love from our playgroup but it didn’t happen, everything just changed or maybe everything became how it was meant to be.

Due to my plonker-ness I was given time to be still, to refresh my soul, the freedom I find as I stare out over the ocean is something I cannot explain. Its as if I can actually breathe deeper for a little while. My heart beats to the song of the waves and my mind stays still just for a moment. 

My holiday may not have gone as planned but it was lovely. 

We visited the Talyllyn railway and travelled through the mountains on Douglas the steam train. Daniel loved it, the gentle movements of the train made for good napping but when the whistle blew he smiled so widely it was precious.

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I do have to shout out to the staff at the Talyllyn railway as they were so amazing, from the ticket lady who made sure we got the carers discount to the guard who made sure the ramp was ready for us, we were treated so well. There was no issue of the wheelchair they just wanted to make sure Daniel had an amazing time. I loved it, the actual fact that I had to sit for a couple of hours and just relax and admire the scenery was so needed. I actually think they could advertise the journey as a soul refresher as I left feeling lighter. 

We visited Barmouth on Wednesday and it was hard, the last time I had walked those narrow pathways was with Livvy. Gosh she loved the beach, my girls they played for hours. Livvy like a queen in her dingy, us nearly destroying her new wheelchair with salt water, she was there. As I sat watching the sea eating my fish and chips I could feel her. As we took Daniel for his first donkey ride I could hear her laughter on the wind. 

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As I watched Daniel trot up and down the beach I held on tight to the fact that he now stood where his big sister did. He got to experience what she did and I, well I  got to see and remember my children happiness. 

Making memories, holding memories close.

Sorry I couldn’t rise.

I’m not sure where my head has been for the last few weeks, I’ve completely felt a detachment from the world. On the outside looking in. I’ve been falling into an abyss of what if’s, what should of been’s and to be honest a hornet’s nest of why not’s.

Social media has been full of graduations and moving on photos and I’ve just felt angry and raw.

Grief isn’t pretty, it doesn’t come tied in a pretty bow. A ornate basket with a jar of missing tears and bottle of memories.

No grief is a raging ocean, dark, bottomless and threatening to pull you under at the least expected moment and I’ve been drowning.

I feel such a bitch but I’ve scrolled past photos without commenting, without celebrating the achievement because I was angry, I was resentful because Livvy didn’t get to celebrate it.

I couldn’t drag myself up out of the pain to celebrate others when there will be no prom for my girl, no sparkling dress, no fancy shoes.

There will be no graduation for my daughter, she didn’t even get to complete primary school let alone head out of education into the great unknown.

I hate that I’m angry, I’m appalled at myself for being jealous but my goodness missing her hurts In a way I just cannot describe.

There is always going to be moments that are raw, moments that should of been and I’m always going to try and be ok about them but I’m never actually going to be ok with them.

There will always be a Livvy shaped piece in my heart. Always another tear to fall in missing. A breath to be lost in grief.

Rett Syndrome took so much from us, it took Livvy from us and right now I’m tumbling into grief, anger and complete sorrow.

I miss my girl, I miss her so damn much.

So to those who I haven’t celebrated this last few weeks I’m sorry. My heart does sing for your moments, I’m so very proud of all of you and I’m so sorry. Sorry that I couldn’t rise from the depths of missing this time, sorry I didn’t have the strength to pretend.

I just miss my beautiful girl so,so very much.

She should have been 19.

I’m not sure how to explain today, how to find the words.

It seems wrong to say that my daughter is 19 today, when in reality she will be forever 9.

I want to celebrate what should be her special day.

I want to eat cake and sing happy birthday, but my heart is just so broken.

How can you celebrate when you cannot hug the birthday girl tight?

How can you smile when forever seems so far away?

Gosh I miss my beautiful girl, that feels like such an understatement. Every breathe I take aches for her, my arms crave to hold her again, my heart beats with a missing piece.

I torture myself wondering what she would be like now, I wonder would she still love her football players, her gothic clothes and Tinkerbell. Yet how can I really know, she has been gone nearly ten years, her sisters have changed so much, so would she?

I have no idea; do you know how hard that is to comprehend? No idea at all. I should know my daughter, I should have been given the chance to.

My heart feels on a roller coaster right now, my faith doesn’t feel like the liberation it should be. Yes, I believe I will see my daughter again but forever is still out of my reach.

Is it wrong of me to wish her back here, back into a body that struggled so much, a body that betrayed her in so many ways?

Is it selfish of me to just want one more day?

Nineteen, it would have been the last of her teenage years, yet the truth is she never got to the beginning.

Nine and a half years, a minute moment in time, not enough, never enough.

I know Livvy would be cross at me today, I know she would be giving me her evil eye and her stern look.

“Mom you know better. You know not to waste a moment, celebrate me and do it with joy. Remind my sisters how much I love them, tease my new brother who you should know I got to meet first. He may have got lost on his way, but I got him to you eventually.

Get out there Mom and enjoy the sunshine, sing at the top of your lungs and hug my Dad tight.

No sadness, no sorrow, no more”

I can actually see her in my mind conveying all this, her eyes alight with mischief.

I can actually feel her soft hand, her long fingers entwined in mine.

I can feel her, but my goodness I miss her.

I can try my darling girl,

I promise I will try,

My heart wants to fall into a million pieces,

My soul just cries out in missing.

I don’t know what or how I will be today, maybe there will be moments of joy wrapped in the ribbon of sorrow.

I can try but I’m sorry Livvy I cannot promise, I just miss you too much.

Happy heavenly 19th Olivia,

Happy birthday Livvy xxxxx