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. 

“Allowing others the space to be vulnerable may be the bravest thing we can do.”

 

 

 

Happy International Nurses Day

Today is international nurses day and I just wanted to say a big thank you to all those nurses that have walked through life with my children and I.

We are so lucky to have some amazing medical professionals in life but our nurses are something special.

We have a wonderful team of community nurses who are always working hard to keep Daniel stable and at home. Who are always willing to listen to a worried Mama and reassure or visit to double check.

The amazing nurses of our local hospital who know Daniel well, some I’ve known from when Livvy used to visit, but they always go that extra mile to make sure all Daniels needs are met. They also really love on him, sometimes so much that I’m sure he visits at times just for a cuddle, you are wonderful.

Our beautiful Acorns hospice nurses who come and care for Daniel in our home giving me some respite to catch up with work, play and sleep. Daniel truly looks forward to your visits and I rest easy knowing how well cared for he is.

Our specialist endrocrine nurses who never tire of my endless questions and worries no matter how irrational they are.

I truly love our nurses and as today is International Nurses Day I really wanted post to say thank you.

Thank you xxxx

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.

Owning your truth

Have you felt that you are at the end of everything?

That you have reached the point of no return?

That’s exactly how I have felt these last weeks, my face aches from my fake smile and my heart aches for my truth.

Sometimes in life you don’t actually realise that you are living a lie, you have even managed to convince yourself of the pretense.

What do you do when you see the light? When finally, the sticky tape that has been holding you together gives up and reality all comes spilling out like a raging river.

What do you do?

I hope you weren’t hoping for me to have the answers, I actually have no idea.

What I do have is my first step.

No more bullsh*t, no more fake smiles, no more pretending.

If I start with truth, then maybe truth will be the guide I need for my next step.

I’m tired of being ok with things that are not ok, tired of other people assuming their opinions are my own. Tired of saying yes when I really want to say no, tired of just not being me.

I hate that I do this to myself, I encourage others to search for their truth when I’m not owning my own.

I hate being a people pleaser, there is a difference between wanting to support, guide and love on others than just bending to the will.

Seriously,I am simply my own worst enemy, biting my lip so hard it bleeds when I know I am entitled to my own opinion and my own wishes.

Why do I do this, why do so many of us do this as I know I am far from alone?

Have we become scared of being uncomfortable?

Have we just become accepting of settling?

Do we not deserve to live our lives fully and wholeheartedly?

 

I know I have changes to make, people that need to hear me. In fact, I’m sure that nearly everyone reading this wants something more in their lives.

So, join me and start taking back your own truth, start living your life fuller and wider.

Remember those that love you, but also remember that you must love yourself.

This life is a journey but its an one time deal, so make it the best you can, be true to you and others will know your truth to them.

My rainbow tribe

Last Friday night was one incredible evening along with a wonderful group of people I hosted a Rainbow disco, a fundraising event in aid of raising funds for our local Children’s Development Centre sensory room.

Over the years I have hosted a number of fundraising events, but Friday was so different as I didn’t do it alone.

I first attended the Children’s Development Centre 16 years ago when we started on our journey into investigating what was happening with Livvy. I was welcomed by staff who wanted to support and help me as much as they could. I can honestly say that some of the faces may have changed but the philosophy hasn’t everyone really wants to support you and your child.

I started at Little rainbows  a specialist playgroup for children with complex needs in April 2016, Daniel had been with us for a few months and it was time for us to encourage him to socialize and challenge him to learn and engage with others outside the family. Whilst he struggled with attachment and often switched off, from day one we were all made welcome by the group. The staff are genuinely lovely and the parents, well they are some of the best people I have had the pleasure to meet.

I have written here often on my blog how I struggle with friendship yet here at Little rainbows I have been blessed by some amazing friends. Women and men who have opened their heart and arms to both Daniel, I and even Alan (lol). We have become part of a tribe, the rainbow one.

Daniel will be leaving this group very soon as he starts his school journey and whilst I will miss the lovely staff at rainbows I know I won’t have to miss my friends, little rainbows is what introduced us,but friendship is what holds us.

We are the rainbow tribe.

The journey so far; Living like Livvy

It has been a couple of months now since “Living like Livvy” was published and  I cannot tell you how amazing it has been, the feedback from the Rett syndrome community has been amazing but it has also made an impact greater and wider that I could have ever imagined.

I have received a number of wonderful messages from those that have read my story and I know Andre has received a lot more. Both of us started this journey with two hopes, one to raise awareness, two to raise much needed funds for research into the cure of Rett Syndrome, I am so thankful that we have achieved both. Yet I know both Andre and myself could never have foreseen how amazing the book has done. The reviews we have received have made all the work (mostly Andre’s) worthwhile, we are hearing from families who have been encouraged to challenge themselves to think outside the box a little more. I’m hearing from parents who feel less alone due to my story. I know how hard it was in the midst of Livvy’s regression and I am so thankful that I can bring some semblance of hope to others.

Still I have to confess it has not been easy, walking through my journey has brought back more memories than I could ever have imagined. Talking about Livvy so often has left me feeling waves of grief all over again. Moments shared became moments so terribly missed. It sometimes only feels like yesterday since I lost her, and I cannot get my head around the fact that this November it will be 10 years.

I’m not ready for it to be 10 years, when we reach this milestone it will mean that Livvy has been gone longer than we had the gift of her.

I cannot go there, I refuse to go into the darkness, Livvy was and always will be my light. I was so blessed to love her, to be her Mama.

“Living like Livvy “may have been hard but it’s a gift in its own right, Olivia’s essence breathes through the pages, her courage inspires and her strength holds me up daily.

Yet whilst “Living like Livvy” is doing well, Andre and I are far from complacent we still want the story to be shared wider and more funds raised for the much-needed research. We want Rett Syndrome to be cured, we want to live in a world where the diagnoses is not one filled with fear.

So, join with us as we continue on our campaign to cure Rett syndrome, buy the book, make a donation and share widely.

Parental guilt ?

Yesterday I felt so ill I actually had to spend the day in bed. I couldn’t stand without feeling dizzy and my temperature gauge was completely crazy. Hot, cold, sweating, freezing. It completely sucked but the worse of the day was the internal battle I was having with my mind.

Am I the only parent who believes they should never be ill? That by being poorly I am letting my children down?

Why do I do this to myself?

I mean for a start I’m human, I’m a mortal being whose body can often be found at war from viruses, conditions etc. Being a parent did not make me immune to all this.

Actually I think that would have been helpful, immunity and the ability to survive on little sleep should be delivered gift wrapped the day you become a parent. Yet it doesn’t so yes I’m human and sometimes human beings get sick.

I cannot help this situation, I didn’t request it and I certainly don’t enjoy it so why the heck am I feeling guilty?

It’s crazy actually what I feel guilty for since I’ve been a mom.

Nights out without children- obviously means I’m scarring them for life.

Forgetting non uniform days at school

Forgetting which child hates all vegetables compared to the ones who will eat a few.

Not washing the jeans that the teenager left on the bathroom floor and not realising those are the ones she needs for college right now.

Not having enough money to purchase a car for each child.

Not having enough hours in the day for everything?

Seriously though when did I decide everything was my fault?

Also is this a parent thing or a mom thing? As Alan doesn’t look back when he goes out at night, doesn’t think non uniform days should be a thing and really doesn’t stress when forgets pretty much everything. Yet I’m my own worse critic.

I just don’t understand myself, I’m the first person to tell others to give themselves a break. That perfect parents do not actually exist, yet lying ill in bed I’ve been really down on myself.

Someone give me a kick please.

Happy International Women’s day

Todays is International women’s day a day when we celebrate the achievements of woman. A day where women are recognised for all they do.

To be honest part of me is frustrated that we need a women’s day or a men’s day, shouldn’t we be celebrating all people at all times regardless of their gender? Still it is nice to see the media full of amazing inspirational women whose gifts to the world should be recognised.

It is said that being a woman in today’s world is exciting and yes it is. Maybe we are heading for a society where the bar is starting to even out but we are still a long way off from equality . I do wonder if it is an easier time to be a woman? Societies expectations used be a woman should stay home, keep house and raise the babies and whilst that’s now classed as old fashioned have we really moved further along? I feel that this is still expected but now we are frowned upon if we don’t look amazing and also have a successful career as well.

One thing I find as a woman is that vulnerability seems to be shameful. To admit that I haven’t got all the answers, that I cannot be all things and that sometimes I screw up is a big no no.

It’s seems in the quest to be perceived as equal we have to be cool, calm and collected. All things I am not.

So does this make me less of a feminist? Less of a women striving for equality?

Erm no

Being a woman, being equal is being exactly who I want to be.

Society is trying hard to create illusions of who we should be, how we should look, what our place is in time, the roles we should play.

Well screw those stereotypical manipulative notions. I will be who I want to be.

I have and will continue to raise my daughters to know their own worth. To know their own minds and to walk their own journeys.

I want them to know that the end of the day only themselves can make them happy. No man or woman can fulfil them, their truth is their own.

I want to continue in my own self growth, finding out who I am not the roles I feel I have to play.

So to all your women out there today, Happy International Women’s Day you are all amazing, incredible people. Take this day as a celebration of who you are and all you have achieved. If there are things you want to change, start right now but more then anything remind yourself that self confidence, self acceptance and self love are not just wishy washy words they are what is needed to change the world, your world.

Love yourself, be vulnerable and find your truth.

Happy Women’s day, we rock xxx

17, baby girl

Time seems to be flying by quicker than ever. Life is threading through my fingers like water. I know my children have to grow up but I have to admit that the fact that my baby girl is seventeen today feels unreal.

My little wise owl, the girl who refused to wear trousers until she was eight is now on the verge of adulthood.

Brodie you have been a gift from the first moment you were born. you entered into our world at a time of confusion and you became my calm in the chaos.

The littlest of four girls your character was so unique, your smile was so amazing, dimples galore.

You were born with such a caring nature, loving on your sister when she needed, two peas in a pod. Nothing was ever too much for you where Livvy was concerned.

Nothing has changed, your arms opened to Daniel, your heart full of love for him. His smile when he sees you says it all.

Brodie Lea, I don’t mean to be embarrassing but I cannot let a chance to go by too remind you how incredible you are. How beautiful you are and how much we love you.

We love you to the moon, stars and back again.

Happy birthday  my sweet baby girl xxxx

Privilege

As I sit here breathing in the smell of my son who lies in my arms I know privilege.

The gift of full arms, of a full heart is so obvious to me. Yet others seem to feel the need to tell me how lucky he is, how fortunate.

I’m not sure if my view of adoption is different to others but I know without a doubt how privileged I am to call this boy, my son.

Each day I get to witness his smile, to hold his hand in mine, to hear him cry out for me his Mama.

I get to love this precious one.

That is my idea of pure privilege.