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.

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?