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?

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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. 

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Finding your journey

For those of you that follow me on my social media you will know I have been on a fitness journey since January. A decision I made at the beginning of this year about becoming the best version of myself. To work at my physical strength so that I could care for Daniel as long as he needs me.

Let’s just say it hasn’t been the easiest of journeys, blood, sweat and plenty of tears.

It’s not actually been the physical challenges that have been the ones I have struggled to overcome but more the mental ones.

About 15 years ago I suffered an assault which effected me more than I realised. A group of young men under the influence decided that my phone was theirs. I didn’t argue, something which surprised me as I always thought I would but I didn’t. I realised that my phone wasn’t worth it, also have you ever tried to argue with someone drunk? There is no point and often adds fuel to the fire. Anyhow it seems taking my phone wasn’t enough and I was physically assaulted by this group.

To say I was a mess would be a understatement but I was also ashamed. I had left the house when it was dark only around 6pm to walk the dog not because the dog needed walking but in rage after an argument with my husband. So my temper tantrum led to me walking down our canal path into a group of drunken teenagers. Even the sight of them never worried me until it was too late.

I was injured but ashamed but also stressing how this was going to impact my girls. We were only days away from Christmas so I decided to play it cool. Yes the police was called but when asked if I was ok my answer was “I’m fine”. Well until I wasn’t, it seems the kicking I received had caused some internal bleeding, me not getting treatment caused infection which left me seriously ill and pretty much bed bound.

As you can imagine being left with a chronic pain condition isn’t great and for a long time I honestly believed my fitness days were behind me. I accepted that I couldn’t teach dance anymore and was just grateful for the energy I had and the tolerance for pain I build which allowed me to work and enjoy my family.

Yet this January something flipped in my mind. I was hungry not for the old me but the part of me that used to love pushing her limits. I wanted to be healthier for Daniel and myself and I just wanted to see if it would be possible to increase my fitness levels.

So I joined the local gym, if I could only explain the fear I felt when I went for the induction, I had asked my husband to come along with me as I was sick with nerves. Thankfully the instructor was lovely and really encouraging and the gym fell comfortable with a mixture of ages and abilities. It took me another week after that induction to return but I loved it. Then after weeks of finding the courage to ask I had my first personal training session.

This is where the mind battle really began to wage. A personal training for me, it felt insane and I was expecting him to laugh at me on our first session but he was awesome. After a deep medical discussion ( I mean yes that took a while). He started me with a few exercises and introduced me to some weights. I honestly surprised myself by how well I did and I shocked myself by how much I loved it.

I really did.

Yet my battle is far from over, every time my body hurts I have to mentally encourage myself. Changing the words “you aren’t good enough “ to “you will get there”.

But I genuinely love it, I am taking away so much from it. A new found confidence in my strength, a new love for my body and a happier energy.

I know it sounds crazy but I don’t recognise the person I am becoming in a good way. I’ve even become obsessed by gym wear and my husband brought me the most gorgeous pair of trainers because he was so proud of me and I could have cried.

Again who am I?

I guess why am I writing this and if you have followed me this far thank you but I really need you to know this.

Life can get better, you can be stronger and you can find your way even after being lost for a long time.

Maybe your thing won’t be exercise though I highly recommend it for mental health as well as physical, but find your thing. We have a 60 plus year old lady in the gym who has just realised she loves boxing. The smile on her face as she punches the hell out of the punchbag is incredible.

Find your thing, try a sport, take a class, start a new hobby. It’s never to late. Find something that makes you happy, maybe it will push you out of your comfort zone in the best way.

Walking into the gym was the best decision I have made in a long time. I cannot forget what happened on that fateful dog walk but I am challenging myself to move past it. For a long time I allowed those boys to not only rob me of my phone but my identity believing I couldn’t be the same person as I was before the assault.

It’s true I cannot go back to the Sara before the assault, before the illness but who actually wants to? Life is for learning and I’ve certainly learned a lot of lessons in my lifetime. But hey they say Knowledge is power.

I don’t know where my fitness journey will go, I have no destination in mind. All I know is that I’m feeling stronger and healthier than I have in a very long time.

Who need a destination when you can just enjoy the ride?

Go find your journey now, honestly it starts with the first step and you deserve it.

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.

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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?