Ten years too long

Dear Livvy

How can it be 10 years since that fateful morning?

How can it be that the years have now turned into decades?

How have I survived without you?

How am I surviving?

When you first left us Livvy I was sure I would die from my brokenness. I couldn’t understand why or how my heart continued to beat without you. I cried myself to sleep with guilt for surviving, for living when you didn’t.

But as the days turned into months I learned that my journey wasn’t over yet. That my job was to make your legacy known.

To share with the world your legacy.

Your legacy of love!

Livvy George you loved life with every breath, you tried to cram so much into your day.

Making your moments, loving on others and laughing hard.

Losing you only reinforced the lessons you had been trying to teach me in your lifetime.

Make the moments matter and love hard.

You didn’t care for fancy food or designer clothes all you wanted was that one last hug, that one last chocolate biscuit.

You were strength baby girl, fighting every day with sheer audacity to pack every second with love and laughter.

You were hope, seeing you defy doctors encouraged, challenged and celebrated everything.

You were love, unconditional , open honest true love. You came as you were and accepted others just the same.

In the past ten years I have lived life by one rule, What would Livvy say? Have I given enough, have I helped enough, have I loved enough?

When I have struggled and felt like giving up, I remember and rely on your strength, you never gave up even when others around you had.

When I have cried and felt like withdrawing from the world, I remember your smile and your mischievous ways and stay present.

Your legacy is in all of us that had the gift of knowing you and now thanks to the book written about you with those that didn’t.

As I watch your sisters grow I wonder what you would have been like now. Yet I also see you in them too, in their smiles, in their laughter, in their strength. I know you would be so proud of them as I am. How they refused you let losing you close off their hearts, they have and they still do hurt but they do not ever give up.

Livvy I wonder if you see what we have done since we lost you, the children we have called family through fostering and the baby brother I know you would have cherished. I often look at Daniel and see you, he is so cheeky at times and has us wrapped around his little finger that the feeling is so familiar.

I pray you are as proud of us as we are and always will be of you.

Ten years my baby girl, how the heck has it been so long? I still wonder why the world continued to turn without you. Yet I know that’s exactly what you would have wanted. You would have kicked my bum if I had given up.

I miss you, these three words don’t seem to hold all that I want to say but they are my heart. I MISS YOU. There isn’t a day, a minute a moment that goes by when I don’t.

Forever my baby girl.

I love you to the moon, stars and back

Mommy xxx

Chatting to God.

I hated praying, struggling to find the words that sounded right to speak to God. Growing up the Lord’s Prayer was beautiful, but so formal ,so correct that when I tried to pray beyond it I struggled fell over my words and honestly gave up.

I’ve tried journals, I’ve tried prayer devotions but nothing felt right. 

I would write my prayers down and that helped but I really wanted to be able to sit, speak out loud and share my heart with God. 

I stepped away, losing myself in the worship at church and the shared prayer but when alone my words stumbled, then halted. 

When a leader asked if I wanted to pray out loud my heart would triple its pace and my mouth would become so dry. So many prayer circles went silent when they came to me, the uncomfortable emptiness filled only when the person next to me took pity and began to speak. 

Yet talking to God wasn’t a problem, conversations on the drive to school, chatting about how I wanted my son and girls to have good days. Would God keep an eye on them and watch over them please? 

When friends were struggling or their children were ill, I would be “Hey God please be there with them in the hard place, let them know how much you love them”. 

Still I wasn’t praying, was I? 

Somehow in my mind prayer had become a formal way of conversation. It had to flow, had to be pretty, had to make sense. You couldn’t stumble over things when talking with God, no I had to learn how to pray with purpose.

Yet after one more failure of a prayer devotional I literally found myself praying about praying. “Dear God, help me to pray better, show me how to have a conversation with you”. “help me to pray properly”.  

I swear I heard God say “WHAT, what have we being doing this last 40 plus years?” 

You see the light finally switched on ( I’m a slow learner) God didn’t care for formal or organised. All he wanted was my heart. Those drives to school where I handed him my children, where I asked him to watch over my most precious gifts we were chatting. Those nights when I cried myself to sleep asking so many “why’s” so many “I don’t understand but I trust” I was conversing with God. When I asked him to watch over my friends he heard me. 

I had confused prayer big time, all God wanted was me to chat to him. He doesn’t need pretty verses or flowing paragraphs, he just needed my heart. 

When I’m singing my heart out in worship he heard me. 

When I literally ask in the midst of pain for him to walk with me, he hears me loudest. 

God knows my heart, he didn’t, he doesn’t need ribbons and bows he needs my truth.

So my prayers may sound like I’m chatting to my Dad but isn’t that what I’m doing, talking with my Heavenly Father.

Finally learning this lesson has freed me so wonderfully, I am chatting with God more than ever. Praying openly and genuinely with my whole heart, I’m not stressed over the words but the substance of my prayer. 

Dear Father, my friends children are not well right now, I know you see them and I know you are with them but please  let them know your peace in their heart’s. 

Amen 

Dear Father, I was awful today, I let me anxiety turn me into a nightmare, I’ve nagged at my husband, shouted at the kids and vice versa. May they show me Grace, May I ask forgiveness and may I learn to deal with situations in better ways.

Amen 

I’m loving my conversations with God. 

Loving the freedom of my sharing my heart, without worrying about correctness.

I am often struck thinking of Jesus and how he talked to his Dad. Did he feel the need to be formal or did he cry out to his Father asking for strength, support. 

We know he did. 

So I guess if you are struggling to pray, struggling to find the words to share your heart with God. Step back, forget the formality and allow your spirit to speak. There is no right way or wrong way to talk to God all he wants is for him to hear your heart. 

Dear Father, I’m asking for everyone who believes prayer has to be formal and correct and because of this belief struggles to talk to you, May they know that you don’t care how we talk as long as we talk. You know how slow I was to learn this lesson, grant others quicker understanding. 

Your daughter always 

Sara xx

Happy 22 years…

“They won’t last, they aren’t matched, I will give it a a year or so.”

These are statements that were literally made on our wedding day.

As we celebrate 22 years today I am so pleased we didn’t listen to the naysayers.

Alan, you drive me insane, you are grumpy, frustrating and completely adorable and I love the very bones of you.

I look back over the last 22 years and wonder how the hell we have survived it. I know at times we have come close to breaking but our love for each other has kept us strong.

I’m so thankful I get to do life with you, our crazy wonderfully exhausting life.

Happy 22 years grumpy, I love you.

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.

Are you really my friends?

I’ve been honest here before about my struggle with friendships. How my awkwardness and self doubt has often left me pulling away from friendships. The fear of losing people has often led me to push them away.

I know why I do this, but stopping myself is a whole other battle.

Anyhow I was asked the other day about why I talk about my internet friends so much? Also are they really my friends?

So are you?

I’ve never been the best at friendships, never one for big groups. They just required too much brain power and for me to be out of my own mind more than I was willing. Family commitments and having a lot of siblings just never made me feel the need for large friendship groups. Also the dynamics of social groups mess with my mind. Cliques, status I simply couldn’t be bothered or understand. I often just don’t get people and social situations and I’m lousy at small talk.

So hello internet.

For someone who hates talking on the phone ( a whole other blog post) I found online forums to be freeing. I could chat to who I wanted and when I wanted. The groups were those with similar interests as me or similar lives.

First it was the special needs forums then with Livvy’s diagnosis it became the Rett community and then unfortunately I found myself in the bereaved family forums. All people willing to chat, support and guide me without any pressure on me to be anything but myself.

Then hello social media,

Wow I loved it, again I was given the opportunity to develop friendships with people miles away from me who just got it. Rett moms who cried themselves to sleep after watching their daughters seizure, parents trying hard not to lose their minds with their teenagers.

It was great, until it wasn’t.

I’m not sure what happened but losing Livvy changed the way I viewed the world. I couldn’t do arms length anymore. I needed close, deep friendships but I wasn’t ready. Emotionally I just couldn’t invest time or mind-space into others. I needed to heal, love on my girls and I suppose be a little bit selfish. I couldn’t be compassionate when my heart was broken. I’m sure many other bereaved parents will tell you that one of the hardest moments after losing a child is when you realise the world continues on without your child in it. I struggled with this so I hid away until my anger subsided enough to let me live again.

Hello hashtags

I laugh when writing this but Instagram and hashtags became my best friend. Literally a search engine to likeminded people. I love them, how many times would you expect #seizuresuck to appear, more than you imagine that’s for sure.

#Panhypopituitarism

#hydrocephalus #diabetes insipidus, #cerebralpalsy, visionimpaired #hypothalamicdysfunction #epilepsy

#Chroniclungdisease

#specialneeds

#complexneeds

#disabilityawareness

These hashtags have brought me in contact with some amazing people and now I’m determined not to hide from the friendships I am forming.

I have come across parents with children with complex needs with such a love of life that I cannot help but be excited by them. Their energy is contagious and their children’s smiles so infectious. like myself they live to make the moments matter. Standing up against discrimination and showing that our children matter, all children matter.

I am finding that sometimes it’s easier to be transparent behind a screen, to admit you are struggling when you are not face to face.

I have also seen waves and waves of support literally lift people out of the depths and I’m so proud to call these people my friends.

Yes some relationships I have formed are deeper, some I literally feel are family where others are not so close but I’m equally thankful for.

Some friendships will stay behind a screen and that’s ok but others I’m nervous but so excited to bring into the real world.

But all I value, all matter to me.

So in answer to the question are my internet friends real friends? My answer is this, “Completely, I don’t want to do life without them. “.

Hello Sadness

Hello Sadness,

I wasn’t expecting you to visit but please feel free to stay a while.

I understand that many struggle to know you, but I’ve learned over the years that you hold honour in your hands.

How would I know joy if I didn’t know you?

How would I know love if I didn’t experience loss?

You are a time I have learned to acknowledge and accept. A time that allows me to grow.

I used to be so scared of you sadness, I felt by acknowledging your existence I was admitting failure. Yet I now know this was wrong. I cannot live in continuous state of happiness it becomes false and empty. Life isn’t all fairytales and unicorns.

I need to know you sadness, to learn to appreciate all that is good. I need to accept you to allow my heart to feel completely.

I confess though, I often don’t know what to do when you visit. The world does become a little darker, I become a little lonelier.

I worry about burdening my friends when you visit, yet isn’t friendship about sharing the highs and the lows?

I have found in my own transparency that others find the freedom to share their truth.

That they too, often worry when you come to stay.

Sadness you are my truth, you allow me to see what is good and what isn’t it my life. You give me the space and the need to fix the things I can change or to accept those I cannot.

Perfection is a myth that often becomes a noose around our necks.

The fear of failure which hold us back.

Yet to try and to fail, is at least to try.

Mistakes are life lessons we all have to learn.

I often get caught in the “should have’s or the why’s when my truth should be “with thanks”.

To turn my wants into gratitude.

I’m thankful for this day, this moment.

May this battle challenge me to be wiser, stronger.

May this “have not” make me appreciate more the haves.

May the cannot’s make me more thankful for the can’s.

So hello sadness, let me sit in you for a while.

Only for a while though x

Dear October

Dear October

You are one of the hardest months of the year for me.  You see, It’s Rett Syndrome awareness month and whilst I want to scream and shout everything I can about the devestatsting condition, I struggle.  You see, Rett Syndrome broke my heart, it is the thief in the night. It came and it stole my daughter from me.

In November it will be ten years since I lost Livvy, yet my heart still feels as if it was yesterday.

The pain is raw, the pain is open and the pain is incredible.

Yet it has been 10 years and in that ten years there had been hope.

Hope for treatment

Hope for a cure.

Hope that tomorrow no more children with be born to suffer from Rett Syndrome .

Hope that tomorrow no more will lose their battle to Rett Syndrome

Hope that no more parents will cry themselves to sleep broken hearted.

Hope for No more empty arms.

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So October whilst you may tear at my heart, I’m coming at you fighting. Together you, I and your 31 days are going to shout loud.

We are going to fight back and say, “No more Rett Syndrome”, no more broken hearts, no more shattered dreams and no more empty arms.

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So come on lets do this, lets make this campaign matter. Let’s start sharing our photos with our loved ones in our arms reminding everyone to make the moments matter but also sharing awareness of the condition that has left my arms empty.

Share your photos with two hashtags

#Nomoreemptyarms #rettsyndrome

Let’s get people googling Rett Syndrome.

Let’s get people learning:

QUICK FACTS ABOUT RETT SYNDROME

  • A debilitating neurological disorder
  • Predominantly affects females but also affects some boys
  • As prevalent as Cystic Fibrosis, ALS and Huntington’s
  • Babies lose acquired skills between 1 and 3 years old
  • Caused by a single gene mutation that leads to underproduction of an important brain protein
  • Most kids with Rett cannot speak, walk or use their hands
  • Another child is born with Rett Syndrome every 90 minutes
  • Potentially REVERSIBLE through reintroduction of the underproduced protein
  • Girls with Rett function mentally at a much higher level than previously thought

Let’s raise awareness and lets make this October count.

Please share your photo’s,

Do it, for those fighting this syndrome every day.

Do it, for the loved ones whose heart breaks watching Rett Syndrome slowly steal their children away.

Do it, for the scientists who are working so hard to one day cure this evil, help get them the funding they need for research.

Do it for me, help me make sure that one day no other parent has to face the pain of losing their child to this syndrome.

Do it for Livvy, ten years may have passed but lets keep her memory strong. Lets hold her light and shine it brightly.

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Let’s do this.

Let’s flood social media with the hashtags #Nomoreemptyarms #rettsyndrome

Lets get them noticed, lets shout loud.

Share one photo, share a hundred.

Share a memory, make a memory but lets make this October matter.

October we can do this.

Let’s go.

Love

Sara xxx