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.

She should have been 19.

I’m not sure how to explain today, how to find the words.

It seems wrong to say that my daughter is 19 today, when in reality she will be forever 9.

I want to celebrate what should be her special day.

I want to eat cake and sing happy birthday, but my heart is just so broken.

How can you celebrate when you cannot hug the birthday girl tight?

How can you smile when forever seems so far away?

Gosh I miss my beautiful girl, that feels like such an understatement. Every breathe I take aches for her, my arms crave to hold her again, my heart beats with a missing piece.

I torture myself wondering what she would be like now, I wonder would she still love her football players, her gothic clothes and Tinkerbell. Yet how can I really know, she has been gone nearly ten years, her sisters have changed so much, so would she?

I have no idea; do you know how hard that is to comprehend? No idea at all. I should know my daughter, I should have been given the chance to.

My heart feels on a roller coaster right now, my faith doesn’t feel like the liberation it should be. Yes, I believe I will see my daughter again but forever is still out of my reach.

Is it wrong of me to wish her back here, back into a body that struggled so much, a body that betrayed her in so many ways?

Is it selfish of me to just want one more day?

Nineteen, it would have been the last of her teenage years, yet the truth is she never got to the beginning.

Nine and a half years, a minute moment in time, not enough, never enough.

I know Livvy would be cross at me today, I know she would be giving me her evil eye and her stern look.

“Mom you know better. You know not to waste a moment, celebrate me and do it with joy. Remind my sisters how much I love them, tease my new brother who you should know I got to meet first. He may have got lost on his way, but I got him to you eventually.

Get out there Mom and enjoy the sunshine, sing at the top of your lungs and hug my Dad tight.

No sadness, no sorrow, no more”

I can actually see her in my mind conveying all this, her eyes alight with mischief.

I can actually feel her soft hand, her long fingers entwined in mine.

I can feel her, but my goodness I miss her.

I can try my darling girl,

I promise I will try,

My heart wants to fall into a million pieces,

My soul just cries out in missing.

I don’t know what or how I will be today, maybe there will be moments of joy wrapped in the ribbon of sorrow.

I can try but I’m sorry Livvy I cannot promise, I just miss you too much.

Happy heavenly 19th Olivia,

Happy birthday Livvy xxxxx

Not hiding my boy away

A child breaks their leg, Mom shares image on social media and the comments that follow are full of “bless them” “oh little brave one”. A special needs parent shared their reality and the response is so very different.

Regardless of how people have viewed the coverage regarding Alfie Evans I am getting truly tired of hearing “you shouldn’t show photos like that” “who wants to see a sick child”.

It’s comments like this that makes us special needs parents feel we have to hide in the shadows. It’s ok to share a photo of a normal (I hate that description) healthy child with a broken leg but how dare you share a complex kid?

Comments like “it’s made me feel uncomfortable” are driving me crazy. I’m sorry my life is making you uncomfortable, I apologize that my child’s feeding tube makes you look away. That you feel sad that you have to think of children in situations like this.

Jog on,

Our children are gifts, if we want to share and journal every step of their journey we have the absolute right to. If we want to share our fear, pain and worries we will.

It’s comments like those written above that left me struggling alone with Livvy. It’s attitudes like this that stopped me reaching out to be supported.

It’s not happening again, I will not hide my beautiful boy from those that are sharing our journey with me. I will not allow myself to feel isolated again. As far as I’m concerned if you don’t like what you see or read, don’t follow.

I am so thankful for the community of parents whose children have complex needs here on social media. For the wide-awake club who keep me company in the endless early hours. Those that have been there that can advise or encourage me and for those that just get it.

Social media has brought the world closer, its connections have brought me friends I love dearly that I have yet to touch or hug, but they have pulled up when I’ve been feeling down, wrapping me up in encouragement and love.

Yes, social media has it low points but the community of parents with children with special needs have been a lifeline to me. I love seeing photos of their beautiful children, love sharing in their moments both good and the hard. Love being given the opportunity to support and encourage them as they do me.

So, will I let those that “feel uncomfortable” stop me from being part of this amazing community, no chance I love my people.

Will I hide my child from the world, no way he is too blooming gorgeous?

 

 

 

 

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.

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.