Eleven years and time still continues on.

Sometimes I get angry at time I dont understand how one minute can often seem like lifetime then others fly past like a gush of wind.

You know when you are so excited to go on holiday that the days before your trip seem endless. Then when you are finally away the days just shoot on by.

It seems as if time is often controlled or interperted by our own emotions.

When I was young a year seemed like forever yet now as I am older the years feel like minutes.

I remember when my girls were born, my hopes, my dreams for them all, how they were to grow, learn, love. I never consider time running out on us. Never imagined that one of their journeys would end before mine.

Life played a cruel hand and I lost my Livvy.

Time, oh time, you beautiful, awful thing.

I had nine and a half years with my beautiful girl. Nine and a half years filled with so many special memories but nine and a half years is not enough I wanted my lifetime.

A parent is not supposed to out live their child, it’s as simple as that or so it should be.

Yet the seconds still continue on and the minutes turn into hours and life moves on.

Eleven years, eleven long years since my darling Livvy went to Jesus. I still dont understand why, I only know the how. Eleven years now of moments she wasn’t part of, new memories she was not here to create.

Time they say is a healer I disagree but it has certainly been a teacher.

Over this last eleven years I have had to learn a lot, learn how to live without my beautiful girl, learn how to breathe through the agony of grief, learn how to survive with a missing piece.

Yet most of all time has taught me that still every moment matters.

I was so blessed to have nine and a half years of my beautiful girl, I’m so incredible thankful I have all the memories that I cherish. But I also know that time does go on and that life is a gift and you have to still make the minutes matter.

I know in my heart that Livvy wants me to make my days count. So I’m going to love hard and try to bring some of the joy she brought to me to others.

I want to honour her memory by loving, laughing and living. Livvy is one of my four beautiful girls and whilst I miss her every day I still hear her in her sisters laughter. See her in the sparkle of their eyes. I know she is with us, watching her sister grow, fall in love and make me so proud in all that they do.

I have no doubt that Livvy send Daniel my way, even today talking to his teachers about his mischievous ways there was a moment, a moment when a memory echoed through the school corridor of a blond haired fireball of mischief. A sister leaving footprints for her brother to follow.

I miss my beautiful girl so much but I know how blessed I was and how lucky I still am. One day I will hold my daughter in my arms again and my heart will be whole. Until then my dear Livvy I will love the hardest I possibly can just as you taught me.

Until we meet again, I love you my sweet baby girl. Xxx

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?

Bravery ???

I have been thinking a lot about how we view bravery, how often the word is used and how sometimes it can be detrimental rather than encouraging. How people mean to encourage yet in truth can do the opposite. 

I can only write from experience but there are times in my life when I have felt the complete opposite to brave yet have found myself surrounded by people telling me I am.

When Livvy’s was diagnoses and I found myself facing life with a child with a complex disability so many said,  “you are so brave” “ I don’t know how you cope” all statements were being said to encourage and celebrate me. Yet I was far from brave, I so wanted to run out of my life, to pick up Livvy and live in a world where disability could not enter. A world where Rett Syndrome was banished. I wasn’t brave, I was surviving the only way I knew how, encouraged by the bravery of my beautiful girl.

“I don’t know how you have gone on” this was a statement that haunted me when Livvy died. I was caught in a whirlwind of emotions. It felt like a two pronged comment, my mind actually spiralled for such a long time due to this statement. I mean how have I gone on? Do I not love my daughter enough that I haven’t just given up on life without her, what kind of mother am I? Did I fail her by not giving up? 

Nearly ten years on and I still have no answer on to the question “how I have gone on?” Seriously it has been through God’s grace and the love I have for her sisters and also the innate knowledge that she expected nothing less of me but to live this life fully and that she would certainly kick my butt if I didn’t. I was not brave, I was surviving. 

I still wish people would think before admiring another’s bravery because those words offered in love often becomes a noose around someone’s neck, pulling tighter holding those who so need to admit to being scared, to being vulnerable no safe place to unload. 

Instead please, ask them how they are doing? 

Tell them its ok to be afraid? 

Tell them them they are doing well but don’t ask them how they have got through it, because truly if you are waiting for me to get through my grief for Olivia you may be waiting a long time. 

Be a safe place for people to unload, cast no judgement about where they are at. Just listen, really listen and if you cannot find the words to support just hug them tight. I know there is no answers to the pain, no reason’s to the why but sometimes its just nice to be held. It’s not ok and it may never will be, but I am not alone. That means more than words. 

[inlinetweet prefix=””Allowing others the space to be vulnerable may be the bravest thing we can do.”” tweeter=”” suffix=””]”Allowing others the space to be vulnerable may be the bravest thing we can do.”[/inlinetweet]

 

 

 

It’s October 

October is Rett Syndrome awareness month and normally each year I am sharing here and everywhere as much information as possible to raise the awareness on this syndrome. 

This year I have struggled.

Not because it isn’t as important anymore because it definitely is, but because I am angry.

I’m so angry that Rett Syndrome is still taking children from their parents. 

That Mother’s, fathers ,sisters, brothers grandparents are broken hearted.


I’m angry that my friends have to go to sleep each day just praying that their child will awake in the morning.

I’m furious that so many are in hospitals fighting infections, seizures, recovering from seizures. Families separated, families struggling. 

I’m frustrated that no matter how far the research is coming Charities are still being the ones to fight for funding to save our girls. That government funding is few and far between. 

It’s another year, another October and we had lost another. 

Another too many

Another too soon 

Another heart broken.

So yes October is Rett Syndrome awareness month but for those fighting against this syndrome October is another month in a year full of battles, heartache and fear.

I’m so angry at Rett Syndrome. 

We need a cure and we need it now. 

First Aid Waves

The last two days have knocked the crap out of me. What I thought was just going to be a normal run of the mill First Aid course has actually be a major trigger for my grief.

Sitting there in the conference room when asked if anyone has ever used CPR my heart started to pound within my chest. 

My mind left the conference room right then, I was there back in the moment, the moment I have tried so often to forget. 

I breathe deep, drink a little water and try to bring myself back to the here and now.

Seizures “anyone saw a child seizure”, what ?? 

Yes too many.

Choking, Yes

Severe vomiting, Yes

Sometimes I don’t realise how much in life I have seen. Raising a disabled child opens you up to a world of medical practices, symptoms, treatments that many others will never face. 

Losing a child tragically, well let’s not go there. 

Too much 

and it just blooming hurts.

I’ve had to bury my head the last couple of days. 

Allowing the waves of grief to flow over me. 

Trying to change the horrid memories for good ones.

Burying them I guess.

Yet they won’t ever leave me.   

But life has to go on, 

I have to get my first aid certificate and will need to get it again in three years.

This is a requirement of the job I love.

So I ride the waves, 

Holding on tight to the good memories and learning to swim harder through the bad.

  

True Inscription 

A few weeks ago someone asked me why my daughters gravestone didn’t say beloved daughter, sister and maybe granddaughter. As many of the others did. 

I wasn’t going to answer but the question has been turning over and over In my mind. 

The truth is what you write on your loved ones stone is a personal preference,  but for us, we simply couldn’t get a stone big enough to define who Livvy was to everyone 

Besides being a daughter, Olivia was a beloved sister, she was also a granddaughter, a niece, a god daughter, a cousin and a dear friend. Livvy was also a pupil loved by her teachers.  A patient well cared for by her doctors she was all this and so much more. One neighbour told me that she was the smile that brightened his day. 

How could one stone hold all that she was, all that she is? 

Choosing a gravestone is one of the hardest things I have ever had to do. You have limited space and a small amount of words to describe your loved one. How do you honour them in your words? So many times since the stone was laid I have questioned did we make the right choice, I think we did.

  

Still I don’t think the stone is all we have to remember or honour my sweet girl. 

Everything that we do is in hope to bring joy to her memory. The laughter we share together as a family, the arms that we open to others children. The friendships we make.

The stone is a place which marks the spot where her ashes lie.

Yet in my heart and in those who love her is the true inscription that honours my beautiful girl. 

Sometimes I have too ….

So my last post mentioned that we are holding a fund raising day for Livvy’s 16th birthday and it’s going to a be fun memory making day and a positive way to honour the memory of my beautiful girl. 

Still I need to be honest and say that right now I’m struggling. I’m trying so hard to be positive and happy that I feel like a complete fraud.

My head is spinning and my heart is just slowly breaking a fragment at a time.

Each morning I wake to the memory that my child has gone.

Every night as I close my eyes I pray for a dream. A fantasy where my heart is complete, where I get to hold her in my arms again.

I’m sorry, I know this is far from the positive way I usually try to write. Where I try to use my words to convey all Olivia taught me.

To cherish my memories.

To remember in joy.

Today I just can’t be that person.

I’m just too blooming sad.

My eyes are heavy with the tears that are still to fall. Yet my pillow is wet from the tears that have found their freedom.

My head is in such a mixed up place.

I’m angry 

I’m sad 

I’m missing 

  

I’m so angry at life for taking my daughter from me. 

I’m fuming at myself for not remembering her unrelenting spirit, her bravery, for allowing grief to take the upper hand to overwhelm me.

I’m sad, completely and utterly broken hearted. 

It really is as simple as that.

I’m missing, damn I’m missing everything about her, from her long perfect fingers to her sweet crazy curls. Her long beautiful eyelashes to her cute stubby toes. 

  

I miss my girl.

I had to write honestly today. 

Really needed to share my heart. As much as I appreciate the comments and emails I’ve received of you all  telling me how strong I am, I wanted to be truthful.

I’m not always strong 

I’m not always happy

Sometimes I can’t even pretend.

Sometimes I have to let the tears fall.

To allow the gut wrenching sobs escape from deep inside. 

I have to allow myself to be angry, to be completely pissed off at life, to rage again God screaming “Why?”

I have to allow myself to hurt, to let the pain twist deep into my stomach.

I just have to stop pretending I’m ok.

Because right now I’m not. 

It really is as simple as that.