Starting well

So I’ve the started the new year the way I wanted, prioritising where my focus and energy needs to be at this given time in my life. It’s amazing how pure exhaustion and sleep deprivation can make you more focussed and determined but it is something that’s been on my mind and heart for a while.

It’s been a mixture of emotions, I have felt a lot of guilt. Saying no or I can’t doesn’t sit easy with me but there has also been an enormous feeling of relief. I am focusing on giving myself breathing space, areas of calm and a chance to grow in the direction I want to.

Why is looking after ourselves so hard? Is it a female thing? My husband has no problem with saying no in most areas, sometimes without a second thought. He does not twist himself up inside and second guess himself. He makes the decision based on his needs and time. Whilst sometimes this drives me mad I do admire his commitment to himself.

Every book or information I read tells me that self care is a must, that to be a better wife, Mama or generally better I need to rest and recharge yet I never seem to block time into my diary, or I give it up easily.

So yes whilst I’m feeling a lot of mixed emotions I know I’m taking the first steps in the right direction. I’m making plans just for me and beside Daniel’s health I am not changing them for anything else. I can already feel the change in myself. Right now I’m fighting a cold virus and whilst I feel blooming awful I don’t feel pulled apart by all the people I would have perceived in my head to have let down.

So I’ve started as I mean to go on. I now only have to reorganise the house, look closely at my finances and get some more sleep and I will be well on my way to a more relaxed 2019.

Here’s hoping.

My word for 2019

So here we are on the eve of a new year and the ending of a old. I cannot say that 2018 was the hardest year of my life as nothing compares to 2008, but my goodness it has sucked at times. 2018 has been a year of growth, I’ve learned more about myself than I could have ever imagined. For years I have been professing self confidence or self awareness but this last year I have owned my words. I am very much a work in progress and I have a lot let to achieve and change. Still I am so ready and have already began, who needs a date on the calendar to start, everyday is new beginning a new opportunity to live the life you want.

2018 has brought me so much, I have friendships I cherish, new opportunities and exciting moments that have become incredible memories. We didn’t get to experience many adventures but that restriction in itself has allowed me to grow and finally learn my self worth.

That leads me nicely to my word choice of 2019, WORTH.

2019 is the year I want to continue working on my worth. Learning to see the value in who I am. Appreciate all that I can do. For a long time I have mixed up self worth with ego. That to pat oneself on the back is egotistical and wrong. I’ve searched for the value of myself in others opinion’s not knowing my own truth. 2018 has taught me some hard lessons, that sometimes no matter how much you try or do for others it doesn’t always make them respect or love you more. That I am also not responsible for everything in this world, that others have responsibility too and that sometimes things will just not work out or be as you wish it to be.

I’m learning that it’s ok not to actually like others, that it’s not evil to just think that you don’t want that person in your life.

Realising that the things you do should be in joy not just obligation. If you find yourself dreading a meeting, a group that you don’t actually need to be part of you can leave. It’s not letting people down by admitting that this isn’t your place. I mean what use are you if your heart and mind are not invested?

I have realised this last year that I don’t need to belong anywhere, sometimes I want to and that’s fine but I don’t need to. I can go places and enjoy the moment without wishing I had been invited into a group or a conversation. I am finally happy in my own skin.

Non of this is saying that I don’t want people in my life in fact just the opposite, I want to find true value in friendship, build stronger bonds and definitely make more memories.

I’m excited for 2019, I’m nervous of the changes it will bring especially as we continue to foster and extend our family. I’m excited to watch Daniel grow and start staying at school longer. I’m praying his health is stable and he gets the opportunity to live fully. I’m terrified that my baby girl is going to become an adult this year, it was hard watching her sisters come of age but she has and always will be my baby so it’s hitting harder with her. My girls have all changed so much over this last year. I’m hoping 2019 is a year of goal reaching and dream making for them. Also for the two loves that have their hearts you two are both family and I pray 2019 brings you both your dreams ( beyond my beautiful daughters of course).

For my long suffering husband ( his words ) Alan. I want you to share my word with me, you are one incredible man and I only wish you would know this more. I wish adventure for you and excitement full of joy and memories. Remember to laugh a little more and just enjoy the moment just because.

As for me I want to continue my journey of loving and laughing. I would like to be a little more organised and a lot let anxious but I’m ready to celebrate who I am right now and who I will become. I’m excited for 2019 a year of making more memories. Of only saying yes if I really want to and allowing myself the freedom to grow and learn.

May it be a good year, may we make it a good one because let’s be honest the date on a calendar does not define our destiny, we do.

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

Happy 3 years #notanurse_but

Have you ever been awake at 3am suctioning a child, praying that you can stay at home and not end up visiting your local hospital yet again?

Spent your night making up medications? 

Changing yet another bed, fixing another tube?

Giving another injection? 


I have and thanks to the #notanurse_but campaign I know that I’m not alone. 


That when I am exhausted and feel close to breaking, I am not alone. 

When I am scared of what the future may be, I am not alone.

The gift of having someone who gets it, who lives it can never be underestimated. 

Yet when you are living a life that’s so alien to many it’s literally priceless. 

 I am so thankful for Wellchild and it’s #notanurse_but campaign, for highlighting the impact of caring for a child with complex needs.

For shining a light on a subject that seems to have hidden in the darkness for such a long time.

The campaign has allowed professionals but also family and friends a little insight into this world that we live in.

It has highlighted areas of need.

It has campaigned for awareness, understanding and progress. 

So many have come to me after watching the videos shocked, but with more of understanding of the life I live. With a new awareness about why I cannot make events, why I cancel so often and why I look so tired.

It’s lucky he is so cute x

I am so proud to be a Wellchild parent ambassador, so proud to know some of the amazing families that have taken part in the #notsnurse_but campaign. 

Proud of the way they are shaping services, and campaigning hard so that our children’s voices are heard.

Incredibly proud of the way members lift each other daily, supporting, encouraging and sharing the vast wealth of knowledge that we have. 

Making the world in which we live feel less alien. 

Making us all feel less alone. 

Today is the third anniversary of the #notsnurse_but campaign, three years of incredible support, guidance, awareness and friendship.

Happy anniversary #notanurse_but campaign. 


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. 


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.


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.