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

Another’s eyes

I often wonder what my life looks like through another’s eyes. How do they view me? Do they see the internal struggle I face daily just to be or do they see someone in control?

You see I think I’m like a swan creating the illusion of gracefully swimming through life when in reality my feet are furiously trying to get me in the right direction.

Right now I feel like no matter how hard I paddle the current will always overthrow me. Dragging me the way I dont wish to go. Yet again everyone just sees the graceful not the exhausted.

I think I need to be stop smiling when people tell me ” I have it all together” or correct them when they say ” I don’t know how you manage to do it all”. Speak with the truth ” I dont and cannot”.

No one has or will ever have it all together. Life isn’t meant to be perfect and we are not meant to try and pretend we hold perfection in our hands.

Perfection breeds exclusion, I’m sure, no I know others dont approach me because they believe I cannot understand their struggle. That my decisions meant I’m ok with the constant life battles and that I don’t feel the weariness as they do. The fact is this illusion only adds loneliness to my weariness.

I’m tired of thinking all the time, I’m tired of medical routines and I’m tired of appointments and meetings and fear and worry.

I’m not tired of being Daniel’s mom, but I am lonely living in a world that cannot really be understood unless you live within it.

Daniel depends on me for everything and I’m perfectly ok with that I just get exhausted with the constant battles we face to get him what he needs. I’m frustrated with egos getting in the way of forward movement. I’m angry that budget cuts separates my child from moments and experiences that others can have.

But I will always keep swimming because Daniel is my reason for it all. He and his sisters are my heart but I am learning to stop pretending it’s all ok. Learning to stop saying yes when I really want to say no. Learning to stop trying to be the all as no one person can be.

So if you look through my eyes right now you will see a mom whose heart is full, whose mind is overwhelmed and whose body is in desperate need of a coffee.

Warrior’s

Now I know I have written before about my love, hate relationship with social media, how I hate the way that behind the protection of a screen some find the courage to spurt hate and abuse that in real life they wouldn’t have the guts to do, the keyboard cowards as I like to call them.

But what I really want to talk about now is how much I love it and how social media has allowed me to create some amazing networks and some wonderful friendships.

Being a Mama to a complex child isn’t easy and whilst there are a number of reasons for this, one I struggle with greatly is the isolation. The moment your child gets diagnosed or you start facing challenges different to others your world become a lot smaller and a lot quieter.

So because of this and in hope of making my world and others larger, I have decided here on my blog to feature some amazing people that I have met online and who have blessed my life by encouraging me, challenging me and generally being incredibly inspirational to me.

I am going to label this series of blog posts, The Warriors.

Why Warrior?

Well, let me tell you briefly a little what life with a complex child entails, besides being a Mama or Dad you also become nurses, teachers, carers and advocates for your child. Your days become filled with appointments, medications, therapies and fighting for all of the above.

To be truthful before I had Olivia I had this belief that services, equipment, all things that children with complex needs needed were readily available and easily accessible. Well, never have I been so wrong, the naivety I had now makes me wish to hide under a blanket forever.

Days and days, endless phone calls, emails, letters just to get equipment my child needs to survive, to thrive. Endless days and hours advocating and having to repeat myself over and over again just to be heard. A chair to keep my son’s spine in position and to keep him safe “How dare I want such a thing”. Parents of children with complex needs have to become warrior’s themselves to battle for their warrior children.

So, with no further ado,

Welcome to my first Warrior Mama,

Let me introduce you to Danielle, otherwise known as the narrator and dedicated Mama of Evie.

It was a comment on another friends Instagram post that first introduced me to Dan, the way she was encouraging this other mom really struck my heart. It literally was a virtual hug with words, I then decided to pop over to @littlefoots_journey ,Danielle and Evie’s Instagram and haven’t looked back. Evie is a little girl whose smile is enough to lighted the darkness of days, her energy, her love of life and her mom’s singing bring me daily joy. Evie is a true warrior child, having suffered prenatal and childhood strokes Evie has very complex needs. Yet her condition does not define Evie, her smile, her cheekiness and her teasing of her Mama certainly does.

Danielle is just one of the most dedicated parents I have ever known, nothing is too much for her if it means Evie gets to have an experience. She cares for Evie with such enthusiasm, her singing is adorable, and my Daniel could listen to her read stories all day. When I play her Instagram stories, Daniel gets so excited.

What I love about Danielle is her desire to make the most of everyday and every experience for Evie, like myself she knows we are not guaranteed forever, but nothing is doom and gloom, it’s all about making those memories, something you know I am passionate about.

She makes some amazing sensory activities that I confess to have copied, her excitement getting Evie ready for theme days is contagious and as for Halloween, well let’s just say it’s incredible.

Danielle has walked some hard and scary moments with Evie, yet she does so with such transparency and courage than she inspires us all.

Her honesty is so refreshing, she admits when she is scared and that is so liberating for other parents who are walking similar journeys. Her words inspire and encourage so many.

Her love for Evie is evident is all that she does, and I honestly love her for it.

I have yet to physically meet Danielle something we are planning on remedying soon, yet I actually class her as one of my dearest friends. I don’t know if she realises how her messages encourage me and how much her friendship has blessed me.

So, for my first Warrior Mama post, I would love to introduce you all to Danielle, one inspiring, beautiful Warrior Mama.