wellchild – Rebel with kindness

Have you ever been awake at 3am suctioning a child, praying that you can stay at home and not end up visiting your local hospital yet again?

Spent your night making up medications?

Changing yet another bed, fixing another tube?

Giving another injection?

I have and thanks to the #notanurse_but campaign I know that I’m not alone.

That when I am exhausted and feel close to breaking, I am not alone.

When I am scared of what the future may be, I am not alone.

The gift of having someone who gets it, who lives it can never be underestimated.

Yet when you are living a life that’s so alien to many it’s literally priceless.

I am so thankful for Wellchild and it’s #notanurse_but campaign, for highlighting the impact of caring for a child with complex needs.

For shining a light on a subject that seems to have hidden in the darkness for such a long time.

The campaign has allowed professionals but also family and friends a little insight into this world that we live in.

It has highlighted areas of need.

It has campaigned for awareness, understanding and progress.

So many have come to me after watching the videos shocked, but with more of understanding of the life I live. With a new awareness about why I cannot make events, why I cancel so often and why I look so tired.

I am so proud to be a Wellchild parent ambassador, so proud to know some of the amazing families that have taken part in the #notsnurse_but campaign.

Proud of the way they are shaping services, and campaigning hard so that our children’s voices are heard.

Incredibly proud of the way members lift each other daily, supporting, encouraging and sharing the vast wealth of knowledge that we have.

Making the world in which we live feel less alien.

Making us all feel less alone.

Today is the third anniversary of the #notsnurse_but campaign, three years of incredible support, guidance, awareness and friendship.

Happy anniversary #notanurse_but campaign.

“I’m just a sister” this what my daughter told Prince Harry earlier this week at the Wellchild awards when he asked her why she had won her award.
I’m just a sister,

NO my darling girl you are a sister but you are a whole lot more as well. You are kind, caring, compassionate, funny, and loud. You make me smile in the darkest days sometimes even without meaning to and you are one of the wisest people I know.

Monday night was incredible it was so magical to see you treated as a princess from the red carpet to our royal dinner companion the night was exceptional.

Watching you Brodie receive the Wellchild award for most caring youngster was a moment I will cherish forever. I am so proud of you my daughter, your courage to stand up for what you believe in, to fight for others. Your endless capacity for love.

Our night was just marvellous , Prince Harry was so lovely and genuine. Getting to meet him was wonderful, getting to sit along side him at our table was amazing . I know you were so nervous and I was so very grateful to Gaby Roslin for taking you and your sister around for photos with other celebrities. Many I didn’t recognise because in your words “I’m out of touch”.

Wellchild certainly did their award winners and their families proud. The Dorchester was so beautiful, the celebrity guests, the food were all spectacular. We all had a memory making night.

For me seeing you, Brodie on that stage was just amazing watching the video honouring you was priceless. Hearing you speak about missing Livvy tore at my heart. I know how thankful she was to have you as her sister, how much she loved you.

I was so proud to see you receive your award and so blessed that you got to have a night honouring all that you do. I am so thankful for you dear girl, for your Brodie nights, for your cups of teas and your cuddles. Yet I am most grateful for your heart, so open, kind and loving. Never change sweet girl you make my world a brighter place.

Thank you Wellchild for seeing what I see in my daughter. Thank you for a memory making evening but most of all thank you for working so hard for families with severely disabled children like mine and for making us feel less alone.