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.