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.

Wonder

This school holiday has seemed forever, I haven’t had a moment to sit down and breathe let alone catch up on my television programmes. It’s been a mixture of broken cars, complex teenagers and annoying neurotypical ones. Add a bout of tonsillitis in a child who struggles to swallow and the effects of antibiotics my Easter holiday have been Sh*t with a capital S.

Yet last night I finally managed to sit down and stay awake long enough to watch a DVD. I was actually sent this DVD a while ago to review and can only apologise for the delay in sharing it but that is down to my exhaustion not any reference to the film.

“You can’t blend in when you were born to stand out”

Wonder, is an open-hearted movie that just leaves you emotionally spent in a truly beautiful way.

Based on the New York Times bestseller by R J Palacio, Wonder shares with us the story of a remarkable young boy named Auggie. Born with facial differences Auggie often finds himself at the end of many stares and second looks. Often judged by others by how he looks rather than who he is.

The film begins just as Auggie prepares to start at school, after only  being home-schooled , the movie journeys with Auggie but also his family and friends.

I’m not going to spoil the movie for you, but I cried and  I laughed and my heart was completely blessed by the film.  The acting is first class, Julia Roberts is beautiful as always, Owen Wilson is adorable and Jacob Tremblay who plays Auggie was truly outstanding.

Wonder, Is a film I highly recommend, I sat and watched it with my cynical husband and stroppy teenager and both really enjoyed it.

It’s a film that challenges, inspires and entertains, I loved it.

 

Available on digital download, 4K UHD, Blue-ray and DVD 

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.

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.

 

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

Lets Live like Livvy

Wow, what a roller coaster these last two weeks have been, the release of Living like Livvy has sent me through a cascade of emotions. I have laughed a lot and I have cried a great deal. Sharing Livvy with the world has been amazing and blessed my heart more than words could ever describe, its also left me feeling emotionally raw and extremely vulnerable.

Still it’s been worthwhile, we have raised so much awareness and an incredible about of money already and this is just the beginning.

Yet I want to write about something that has really been my inspiration to keep on sharing our story.

I have been receiving emails and Facebook posts from people who have read the book and who have been inspired to Live like Livvy.

Both Andre and I have received photo’s and videos from Rett families and others who have planned events and gone places they never would before. They have been challenged and encouraged by “Living like Livvy” to step outside their comfort zones, their safe zones and to make the moments matter. 

This is amazing and more than I could of ever imagined. I often write here about the importance of the magic in the moments. How none of us should ever take this life for granted, but to live fully and love hard. This was the greatest lesson Livvy ever taught me.

Confession time though, I’ve realised that since losing Livvy I haven’t been making the moments matter as much as I should of.

So I’m setting myself a challenge and extending it to you all. Lets make those memories.

Let’s fill social media with memory magic, using the hashtag           #LivinglikeLivvy lets get out there and have some fun.

Sharing our fun hopefully will encourage many more to make the moments matter.

Lets do this, lets Live like Livvy.

 

 

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.

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.