Tag Archives: family

Capture those moments

My friend today shared a photo of Livvy and I today on her Facebook, its so lovely to see but it does really hit home of one of the greatest mistakes I made in Livvy’s life.

Not being in photographs with her.

You see I think I have three or maybe four photos of Livvy and I. My fear of being photographed actually has robbed me of precious memories of my darling girl.

How often do you find yourself saying “ I will take the photo” “Oh not with me, I’ve not done my hair, makeup.” I have an endless list of escape sentences that I now regret so much.

You see my daughters didn’t care how I looked they just wanted memories that I was visible in. I wouldn’t have cared how I looked to have images of me holding my precious girl, moments I could close my eyes and recapture in my mind.

Yet I cannot go back no matter how often I wish I could, but I can make changes and slowly I have been, pushing myself in front of the camera instead of behind.

Adopting Daniel and the level of his complexity has hit home again the fact that we are not promised forever and so I have made sure we all have precious memories to hold on too. So this is why for Mother’s Day this year I treated myself to a Mother and child photoshoot and its been one of the most amazing things I have done and honestly  I will cherish the images forever.

Choosing a photographer you trust is paramount especially if you are like me and are petrified of having your photo took. I went with Baby tree photography .

Liza is so amazing, we came across her when she photographed a friends christening and she is so lovely, she captured Daniel’s dedication in September and the characters of the guests were just so visible in her images and Daniel well is just completely gorgeous anyway.

I attended her studio a little nervous but within minutes I was relaxed and actually excited. I did wonder how Daniel would react to the day as he gets sensory overload and often just switches off in new environment but he was a complete star and honestly I think the images speak for themselves. I cannot thank Liza enough I look at the photos and my heart just beats with joy. The moment she captured will be a moment I get to forever cherish “A Mama and her son.”.

Honestly if I can challenge you all to do something this year it would be to capture those moments, don’t be like me wishing you had.


Living like Livvy

So it’s finally here, a years worth of work, a lifetime of memories all collated together in “Living with Livvy.”

I’m so excited to share my girlie with you all, for you to read and learn how incredibly brave and courageous she was. I’m also feeling extremely vulnerable as well. Here in these pages I have not held back, I have opened my heart and my soul and its laid bare for you all to see.

It’s not been an easy journey, i have returned to places in my mind I was trying to hide from. Revisiting some of the hardest moments I have every faced.

Yet it will be worth it, if this book educated one more person about Rett Syndrome if it raises more funds for Reverse Rett Uk it will be worth it.

So people, I am laying out my heart and soul here for you all so please, please support me in this venture. Go visit Amazon and purchase my book and help me raise much needed funds, help me help those working tirelessly to one day have Rett syndrome cured. One day have this diagnoses be one not of fear.

It can happen and it will happen,  let’s help  make it so.

Please visit Amazon and purchase the book, please let your friends, family, coworkers know about the book. Share this post on your social media, lets get “Living like Livvy” out into the hearts of minds of everyone. Lets make Livvy”s legacy really one of hope, lets do her proud.

No drama

I had a friend once, I use the term friend rather loosely now but then she was what I would class as dear to me. We had walked though a lot together and I assumed we would continue to do so.

Then when in the midst of Livvy’s regression I was crying down the phone to her when she uttered the words that have scarred my heart for such a long term “I swear your life is like a trashy soap opera, everything happens to you, or maybe you just like the drama”.

I remember the impact of these words as if it was yesterday. How anyone could believe that this was the journey of life I had wanted to take was beyond me but to accuse me of being dramatic hurt. In fact it hurt so much that I shut down, I didn’t allow my feelings to show. I closed the door on that friendship and many others in fear of judgement.

Why am I telling you all this?

Because I am in a place now where I am ready to own my own story. Ready to embrace what I have lived, not with echoes of shame but with pride.

Having a child who was born with a debiliatiting condition was hard but not knowing what it was and not expecting it was literally a nightmare. I cannot find the words to explain how painful it was to lose my daughter to Rett Syndrome, twice. Watching her eyes leave my face, her words disappear from my ears and her movements lost to the stereotypical.

To see the fear in her eyes as she screamed and screamed, crying out for me to rescue her. It broke me in inside, I cried out to God so often to heal her.

But he didn’t.

Yet slowly and surely he healed me.

I finally began to embrace the journey I was set upon, although it was very different from anything I could have ever imagined it was full of wonder and joy.

Joy, does that surprise you?

My daughter had a severe devastating condition, my son has a very complex disability but both of them loved, loves life in a way that brought, that brings me so much light.

It’s took me a long time to get to a place where I don’t apologise for what some see “as drama” in my life.

I have surrounded myself with people who get it or who try to understand it.

I have walked away from those who don’t or who don’t want to.

I can accept that some people cannot understand the life I lived or now the life I have chosen and that’s ok.

We are never going to be a typical family and I am embracing that, celebrating that.

Yes at times I am lonely and I do get sad at having to apologise for another missed get together, group activity or friendship meal.

But my children will always be my first priority, always my heart.

I don’t know if my friend understood the impact of her words or how they would change me inside. Maybe it was meant as a throw away comment that wasn’t supposed to find roots and bury itself deep.

Maybe it was my state of mind back then that fed and watered these seeds of deceit.

I don’t know and I actually don’t care.

Because I’m not that person anymore.

I cannot say that harsh words don’t still sting or dig deep in my heart, but they don’t get to stay and or get to take root anymore.

I am stronger than I have ever been.

I have faced the darkness of death and my memories, love brought me the light.

I face the suffocation of fear but my sons smile breathes air into my lungs.

My children are my world, they are the air that I need to breathe.

I am stronger for being their Mama.

My faith is stronger than my fear.

To love is to be vulnerable

I am in a little bit of a state right now, anxiety is winning the battle for my mind and my soul.

I hate that I get this way, I wish I could lie still in the peace of faith but I cannot. In fact I suck at lying still anywhere.

Tomorrow my little one is having an MRI which requires him to have a general anaesthetic and the fear of the ‘what if’s’ are just eating away at me.

Do I pack for more than a day? Can I trust he will be out on the same day as planned and the major one and the truth of my heart, will he be ok?

My head tries to remind me of how many people have this kind of a test each day, how its a simple non invasive test but my heart just is screaming “My son”.

Having a child with complex needs leaves you open and fearful. Your heart and mind goes to places many others never venture. Being a mom who has lost a child my mind has been there and lived it and somehow is just about surviving it.

So why do I do what I do?

This is a question I get asked a lot, mostly from parents who have children with disabilities or those that have lost a child. Why do I put myself back there. Why have I adopted, why a child with complex needs and why do I risk my heart again?

To be truthful I am not sure I have an answer for this question.I think we need to go back to the beginning. I truly believed I was a weird child, I struggled with emotions and worries before I even knew what they were. Sensitive to other people’s feelings to an extent that would have me cry myself to sleep with another’s pain. The world seemed a scary place and people often cold and distance. I didn’t understand people and to be honest I am not sure I actually do now.

I would watch people destroy each other with words out of hate, jealously or indifference and I just wanted to run and hide. I tried often to lose myself between the pages of a book preferring the lands of make believe to reality. When books didn’t work I turned to alcohol just to allow me the freedom from thinking, from caring. A few drinks in and life made more sense or so it seemed. But with sobriety came reality and my reality was that I was difference and that was something I had to find a way to accept, to understand.

I had to learn to embrace who I was and the ways of my heart. Understand that oblivion wasn’t a place I could stay or actually a place I really wanted to be.

I had to find what made me happy and that journey of self acceptance started with my marriage but mostly from becoming a Mom. I guess this reads as mush but I truly believe being a Mom allowed me the freedom to know and understand true love. Everything I wanted for my children was what I had always wanted for the world, It was a real aha moment.  But being a Mom is scary stuff besides having to feed, clothe and keep these little ones alive you are the window through which they start to see the world. I never wanted them to feel weird or difference. I wanted them to realise that they were unique, that each of them had been individually made with purpose. That they were exactly who they were supposed to be.

But guess what if my children were made with purpose and they are exactly who they are supposed to be then by default this means so am I.

Yes I may be a little weird or strange (I’ve been called) my heart may break more often than others and I may love with an intensity that seems insane to others but this is me. This is my heart and just as my girls were perfectly formed in my womb I was in my mothers.

I still strive for answers to questions others don’t understand, I think way more than should be humanly possible (my husbands words) but I am who I was meant to be.

I love to love. 

This is me in a nutshell.

I love the joy of knowing that someone understands how valuable they are, how they are a gift to my life in so many ways. I want everyone on the planet to know their true worth.

Happy clappy, airy fairy, who cares, I am who I am.

So why wouldn’t I be sitting here in a state of fear loving a child that was not born to me. The biology bit is irrelevant, God called me to be his Mama and I am so damned happy he did. Yes it’s scary, yes I am fearful but I am so blessed to love this kid.

Why did I adopt?

Why not, when there are children in this world that needs a home and someone to love them, why shouldn’t I. The complexities of anyone comes in so many difference forms, who cares, we are all uniquely and wonderfully made.

I feel C.S Lewis says it perfectly here, “to love is to be vulnerable” but after spending so many years of my life trying to stay in that dark and safe casket I can truly tell you that right now I am fearful, but I am living fully.

Anxiety, heartbreak and fear they are emotions that do and will often overwhelm me, this is part of who I am. Acceptance of these is still journey I am travelling. But non of these compare to the joy of living my life fully, how being true to my heart is freedom in itself.

Losing my balance

There is a saying that “if you want to make God laugh tell him your plans”. Well I think the same should be said for Daniel as soon as I told him about my excitement to attend Blog on Xmas last weekend we then ended up on our local children’s ward.

All joking aside whilst I was gutted to miss the blogging conference being by his side is exactly where I want to be.

Thankfully he is doing ok but it’s another reminder of how life likes to throw you curve balls.

Daniel has a form of diabetes that needs balancing, too much or too little can cause us an issue.

Finding balance isn’t easy but it’s a life lesson we all really need.

It’s been a busy couple of months in my chaotic household it’s not an over exaggeration to say I survived summer by the skin of my teeth. I’m exhausted and emotional not a great combination.

Finding balance has been far from easy.

Life is being a little strange right now, relationships are changing and I’m hurting myself with expectations that often get crushed. My lack of balance is affecting my clarity I’m trying to see the wider picture which isn’t that easy when you are smack in the middle of the situation. Taking a step back isn’t always my first decision and hindsight is just that , hindsight.

Plans can and will change and whilst I thought I was getting better at accepting this I’ve realised I’m holding on to so many things that I really need to let go.

Change is inevitable so I must learn to flow with waves and just sit back and enjoy the ride.

I nearly lied to my daughter

I nearly did it again last night,

I caught the words as they were just about to tumble out of my mouth.

I almost lied to my daughter

Lied to her again.

“ It will be alright’

“it will be ok” 

“ You have got this”.

Why do I do this?

Why do I make statements that I know not to be true?

You see life isn’t easy.

It can be cruel and harsh.

It hurts and causes us pain

and sometimes there is nothing we do can change that.

Right now for my girl its the pressure of GCSE’s that suck, but my telling her that all will be ok does not actually make any difference to the outcome.

Yes GCSE suck but me promising her a rosy ending isn’t true.

Of course her results are not the end of the world but the truth is that they do make a difference to her future.

She has to work her way through the endless hours of revision and hopefully she will get the results at the end of it.


There is no gain without pain. 

Benjamin Franklin


We  all have to make choices  on how to live life.

How to walk the journey.

Sometimes we will make what we believe are the easy choices but I believe that those are only the shortsighted ones.

For my daughter throwing in the towel in on her GCSE’s seems attractive, she gets to stop stressing and stop putting the hard work in, but her future wont be as easy without those grades.

Yet these GCSE’s are only the beginning of a life of challenges and obstacles and decisions she will have to make. She is going to have to face many choices in life, moments that will hurt her heart and leave her scarred. By lying to her i am not going to make these moments easier I will just make our relationship untrue. 

“I’m sorry dear girl that your head feels like it might explode, I’m sorry that teachers cannot see how hard you are working but I’m also sorry that I cannot change these situations for you. 

All i can promise you is that I do have your back.

I will walk along side you with no false hopes or fairytales falsehoods but with truth, love and faith,

faith in you. 

So what it’s the weekend

Seriously it’s official if I see one more TFIF status today I may just lose it. 

So what it’s Friday that doesn’t automatically mean that tomorrow I get to do nothing. No tomorrow I will still have to get up to do medications and nappy changes. My back will still ache from lifting and if we follow on from our current evening schedule I will also still be sleep deprived. 

Oh it’s the weekend so that means my big boy is off and that brings me the joy of chasing him around and saying “please leave alone” every second for two days. 

All joking aside, ok moaning aside I do appreciate the end of a normal working week and that for many tomorrow and Sunday are days of relaxation but seriously stop rubbing it in. 

Please think of us exhausted parents those like me to who the weekend is just another day. In fact the weekend is actually a little harder as school does give me a little respite. 

I absolutely love my life and fostering a child with special needs is a great job but the reality of it is that it is 24hr, 7 days and week and 365 of the year. Being a mom of a complex needs child means exactly the same. So as a mom and foster mom of both I may be slightly shattered. Though as we enter the weekend of Mother’s Day I am so thankful for my boys. It just means at times I just have the urge to strangle those who write TFIF. 

To scared to voice my dream

Have you ever wanted something so desperately that you actually cannot voice your desire?

That the fear of hearing the words outloud is so scary that your stomach does flip flops.

That when people tell you to release your hopes into the universe it feels like a gigantic scam to make your world tumble down.

This is exactly how I have felt about the adoption of my new son. That if I actually shared the ins and outs of the situation it would actually explode in my face, my heart.

It hasn’t been helped by social workers who should have the words “hopefully” and the statement “it should” ripped out of their practice handbook. The hedging of their bets or professional distance is nothing but frightening for an adoptive parent. 

We need to hear “of course” or “it will“.

I honestly feel as if I have been walking on eggshells this last year. From the moment we decided we wanted to adopt our then foster son my heart feels as if it has been ripped out of my chest, trampled on then replaced. It’s been hard and the reason I haven’t really shared this journey here is simply because I couldn’t voice my fear. 

I couldn’t allow the inner demon inside my head any space here on this platform. It was doing enough damage inside my head.

“You aren’t good enough”

“Adoptive parent, you, ha really”

“It’s going to fail”.

The adoption process isn’t easy, I guess it shouldn’t be. The assessors actually have the lives of children in their hands. They have to probe, explore, question. 

“How did you feel when this happened?”

“How would you cope with this?”

And the big one

“Why adoption”?

Your answers of course have to be the truth but I have woke night after night with fear that my truth wasn’t enough.

Thankfully, my truth was enough and last week we found out that the judge has signed our adoption order and in a few weeks our boy will be our son.

I cannot tell you how excited I am, how much it matters to call him mine. I am simply on cloud nine. My heart feels full and I’m sure I haven’t stopped smiling since I heard the decision. 

I may not be able to write down our complete adoption story yet. It’s still a little too raw and it’s not actually at the end point yet. I still now wait impatiently for the date of our celebration hearing and my heart will still probably jump at the delivery of the morning post for a while yet.

But I will state this here, our adoption journey has been hard, we have cried many tears, had many sleepless nights and had way too many stress headaches. 

Yet I promise you this, every stinking moment of this chaos and fear has been worth it, my son, he is so completely worth it. 

Born in my heart 

So it’s seems my little man loves the hospital so much he had to return for another visit. This time of course he had to up the drama level a little or a lot as the case may be.

I’m exhausted both physically and mentally, my body aches and is craving sleep and my mind well maybe we better not go there. 

The thing is I know the life I have chosen to live could get scary, that adopting a child with such complex needs could take me back to a place of such anguish, fear and pain, I do understand this. 

Yet as I sit here in the hospital room after a few days of real fear all I am feeling is thankfulness. I’m so very grateful and honoured that I get to be by this little ones side when he struggled. So blessed that when he needed me I got to be there.  

I know some people do not understand my life’s choices, they see the risk, the pain and understandably they could never imagine putting themselves through it and I completely get that. I can honestly tell you that this week I was petrified. Yet even now as I still reel I know how lucky I am and I don’t doubt or regret my decision to adopt this little one. I am counting down the days till he is officially mine, my son, my heart, my world. 

Life is certainly going to be an adventure and whilst my life may be extremely different to others I am so very content, so very happy. 

And whilst I understand why people ask me “how can I ” my answer will always be “how couldn’t I”.

This boy may not have been born from my body but he certainly was born in my heart.

How could I have forgotten? 

Yesterday the world just didn’t make sense. My heart and my head just couldn’t stay on the same page. I screamed, I cried. I was angry, I was sad and for a while I didn’t know why. 

Why was this day so hard? 

Then I caught the date on my phone December 3rd, 

December 3rd 

As I read that number it hid home with a gigantic bang.

How could I have not realised, how could I have not remembered? 

What kind of mother am I ?

Forgetting the day I buried my daughter. 

If I close my eyes I can recall that December day. It was cold but yet the sun lite up the winter sky, warm rays dancing on the icy floor. 

Frost sparkling like a carpet of diamonds fit for a princess, my princess. 

You know It’s not in any parenting books, or  on any websites. There are no handbooks on how to bury your child.

You wander through it all in daze, making decisions you have no desire to make. The colour of the casket, the silk that lines it. What does she wear? Oh the irony of it all, does it actually really matter? 

Yet matter it did, from the brand new cardigan that Nanna travelled to fetch to the choosing of her special toys, it all mattered, it mattered desperately.

I wanted it perfect, I needed it to be perfect.

It was all I could do, all I had left to do. 

I don’t really remember the words that was spoken or even the memories we shared.

All I really remember is the weight, the weight that consumed me, my feet feeling lead lined not wanting to move. To leave, to leave my beautiful girl behind. 

I kept on at myself “she isn’t there” “she has already gone”. Yet in that casket laid my last physical connection with my daughter and everyone is telling me I have to move, I have to leave. 

I held on tight to my youngest hands as I left that chapel, scared to let her or her sisters out of my sight. Wanting to hold on tight to them and never ever let go. 

I was empty, I was lost. 

Walking through the pleasantries, shared moments, warm hugs. 

Yet nothing was ever going to be the same again. 

I would never be whole again. 

I left part of my heart behind in December 3rd 2008 and whilst the brokenness has started to heal I will also have a missing piece. 

A beautiful blond wild haired missing piece. 

My girl, my Livvy,

Forever in my heart, forever my daughter.