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.