No, I’m not used to it.

Daniel is having surgery tomorrow and my mind and my heart are in pieces. Whilst I know it’s all for the best reasons my little boy is still going under anaesthetic, he is still at risk.

Yet I often find the comments I receive to be less than what I hoped.

“You are used to it,” He has had many operations, It’s only a simple operation.

The list goes on.

Is there really an understanding that the more I have to face as a medical mom the less it hurts, the less fear I feel?

Let me explain something to you as a medical mom I actually find that it’s worse, I know too much.

If Daniel is ill I don’t find myself reassured by Drs, I know how quick life can change and I question. I want, I need to see the numbers, want to read the results. Take for example a few weeks ago when Daniel had sepsis I asked for a blood test that showed his rising infection marker. Why because I know only too well how quick an Infection can take over Daniel. How quick a little chest infection can turn serious. I actually sometimes pray for the days when I never understood the results never knew what the looks Drs give each other meant or what the next stage in a treatment is. I miss the innocence of ignorance.

Tomorrow I know that surgery, any surgery is a risk. I understand that Daniel’s condition makes him extremely vulnerable and it scares me silly.

I dont become numb to the feelings of handing my son over to the surgeon. I dont ever find it easier as times go on. I will still leave that operating rooms in tears, praying beyond hope that all goes well. Trying with all my heart to trust in the surgeon and the amazing team around him, praying with my heart and soul that God watches over him. It’s not easier and I will never get used to it.

“He has had number of operations now, he is a professional “

Yes my son has been under anaesthetic over 28 times that I can count and hopefully some of those he was to young to remember but it’s never been a pleasant experience for him. A day in surgery isn’t like a day at the park. Surgery brings with it fear, separation anxiety and most often pain. He is 4 years old far from the professional. Please dont trivalise what he goes through.

Its only a simple operation, I have had it done, my kids have had it done.

Yes all of the above, tonsils isn’t classed as a major operation but it Is an airway operation with risks involved but most of all please return to the previous paragraphs it’s my little boy having surgery its going to be my boy at risk and its going to be my boy in pain.

I dont understand at times how Daniel’s complexities mean less compassion. Does the fact that he has all these conditions separate him from the empathy given to others?

Honestly I could drone on about this subject for a long time and extend in so many ways but not now. Not now when my internal filter is broken and I may say more than I wish. Fear is twisting me up inside.

Tomorrow is about Daniel, about praying hard that all goes well. It’s about fighting the fear that tries to invade my brain and it’s about being there when my boy opens his eyes telling him I’m right here and I love you and boy, I do love you.

Uncomfortable

When people talk about living life they often use the phrase “I want to be comfortable”, I wonder if I’m strange as I honestly don’t see life this way. 

You get one life, one chance to make an impact on this world and the people in it so how does being comfortable achieve this?

fullsizeoutput_3d65

Maybe it’s due to my faith but my heart just feels like it has to give all it has. Why love one person when you can love a hundred?

I think often of some of the great people in this world and their lives were far from comfortable. Mother Teresa lived in poverty, Nelson Mandela in prison and of course Jesus, without seeming flippant I think being crucified is the furthest thing from comfortable.

I’m not saying I am any sort of martyr far from it but I want to leave this world knowing I’ve exhausted every ounce of love and compassion my heart can hold. I want my legacy to be about people loved not possessions. 

Now don’t get me wrong I wouldn’t pass up a night at a spa for some pampering but is there anything more fulfilling than knowing you have made someone smile. Realising that someone knows that they are loved, insuring someone feels less alone. 

I get the desire to be comfortable to feel safe. Growing up struggling for money and worried about who knocked the door I get it. Yet even when money was tight my mom never turned anyone away for a meal. 

I don’t know maybe I am strange, I’m happy with that. 

Even today someone asked me if I don’t like rest, of course I do, but I also know I have one life and I want to make the most of it and I’m comfortable with that. 

fullsizeoutput_3aa5

My favourite day

To lay down your life for someone is a concept many of us will never have to consider.

We pray it’s never a situation we have to face.

I mean would we lay down our lives for our children our families ,maybe but for strangers?

For people that openly hate us?

Today is my favourite day of the year, a day that brings pure joy to my heart.

A promise made

A promise honoured

The truest definition of hope.

I need today, I need the enormity of the sacrifice to refresh my soul.

I need to know true love.

I need to know the grave has no hold on anyone.

I need to know I am not alone.

I am not alone.

Hallelujah

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?

Dear Social media users

Dear Social Media Users

The power we have at our fingertips should be used wisely. Our words now hold so much more force than ever before. The whispers between friends are now being shared across the globe, gone is the ears of few now to the ears of millions.

Growing up I was lucky to have a wise grandad who once told me “don’t say what you wouldn’t want sharing across a room”. I don’t think he had in mind the expanse of the social media reach but I do feel the concept, the sentiment is the same.

If we realise that nothing we share on these platforms is private maybe then we will less quick to press post, less willing to share.

I sometimes wonder if it’s a good thing, the way a persons innermost thoughts are now shared so widely. How opinions that have been in the shadows are now out in the open.

I worry about the influences on our youth, the perceptions they take as reality leaving them feeling inadequate, not enough.

The cultivation of hate, the rise of right wing hate, religious hateful ideology and the vicious muck spreading of lies. All finding itself a wider audience thanks to the power of virtual connection.

Yet still I don’t hate social media, I really don’t.

It has brought into my life some amazing people. People I wouldn’t have come across in my lifetime, separated by distance or just circumstances . It’s been an incredible resource on my late daughters disability and now my son’s. I’m learning, I have learnt more than I could have imagined most that I would have never have known without this source of knowledge.

It has created communities of support, raised awareness and reached out and brought love to those in need.

But personally I think it has come to a point that we now need to be reminded of authenticity. Times gone by a journalist couldn’t publish a story without having the evidence to prove its claim yet we have only got to look at the press of the recent times to know that this is no longer the case. Smear campaigns, lies and pure fabricated hate is shared across many communication mediums.

I wonder when the ability to write any old rhetoric got confused with the freedom of speech?

I wonder when one person’s opinion became fact?

When one persons fear became hate?

Should we be policing the internet, to be honest I don’t know?

As a person in this country we do have a right to think the way we wish. What we don’t have though is the right to act upon it if it causes harm to another, if it’s malicious in its intent. If it’s to incite hate?

So maybe thats where the policing needs to be, cracking down on those who abuse this form of communication. Those who troll, bully and intimidate others. Those who spread lies and feed the evil of this world. Police those that exploit the vulnerable, predators of any nature to all to face charges of a harsh kind. Intimidation, abuse, torture of any kind physical or virtual should come with the same punishment, a hard one.

But beyond all of this we as people have an obligation to each other to remind ourselves that what we say can be heard beyond the room. That by the words we use, the posts we share we take a responsibility for the substance. We cannot say we did not know anymore, we did not realise.

Ignorance is no longer a defence.

Let’s use social media for the communication it should and can be, one of joy, one of upliftment and one of knowledge.

Be truthful and be kind.

Many thanks

Sara

My baby is 18

How is my baby 18 today?

My last born has reached adulthood.

It’s crazy, I mean I cannot actually believe it.

My shadow, my little bundle of kindness and sass.

Let me tell you a little about Miss Brodie Lea.

Entering the world on the 3rd March smack bank in the middle of her sisters regression she learned quickly to be self sufficient, a little too much at times. She was a light through some very dark days. Her character just lifted everyone. From refusing to wear trousers until she was about eight, her crazy addiction to shoes, she was just the kindness, gentleness daughter, sister ever.

Her heart was wore on her sleeve for all the world to see.

Her desire to see her sister do everything she did to be part of everything was beyond her years.

If anyone every spoke harsh about Livvy my life she was like a tigeress protecting her cub.

It wasn’t just Livvy she fought to protect or care for, she used to rush to open the doors for elderly woman, had the biggest hugs for her class mates.

Her passion for inclusion and acceptance was and is something that makes this Mama’s heart beat proudly.

Growing up wasn’t easy for Brodie, losing Livvy broke her heart and whilst it would have been easier for her to close down and protect her feelings she did the complete opposite loving harder and welcoming new members to our family with her whole heart no matter how long we had them for. She was my inspiration in this, after the loss of both Livvy and little man I was so ready to close my heart off, I couldn’t do it anymore. Brodie called a family meeting and reminded us that if we hadn’t be brave after Livvy, little man wouldn’t have known love, if we wasn’t brave again then what legacy are we making for him. She was so right but the bravery of this then nine year old was something I will always be so incredibly in awe of.

But she isn’t just her caring nature, though the huggable hero’s, born to brave, fostering network, mayor civic award and the Wellchild awards may show, this well, she is also one of the funniest people I know. She makes you cry with laughter sometimes without even trying. Her innocent and sometimes dizziness really make your heart smile. She goes at everything with the energy of an excited puppy often being the contagious excitement we all need.

It’s fair to say the teenage years were hard for my baby girl, her caring heart in an increasing insular world has left her a little battle scarred. The hierarchy of senior school never made sense to a girl who just wanted to be friends with all. For a while I lost my beautiful girl to fear and aniexty but even in her fear her character stayed kind, her compassion stayed pure.

If I was to tell you my daughter was beautiful you would probably think I was talking about how pretty she is and don’t get me wrong she is blooming beautiful but it’s not this beauty I focus on. This girlie just breathes love.

Well Miss Brodie Lea, Happy 18th Birthday sweetheart. I’m praying adulthood is all you deserve. May you reach your dreams, may you know love and may someone cherish your heart as it deserves.

Never settle lady, nothing is beyond you and never ever lose your giving heart.

I love you baby girl, all the way to the moon and back.

Happy 18th Brodie xx

P. S Dad says can you please slow down around the corners.