I am 33, a single parent who lives in Leeds. I have a daughter Jenna who is my angel. She has a rare life limiting brain condition. She saved me from a future of abuse. She’s strong, fragile and will never know her absolute worth in this world. She has given me pure happiness and asks for nothing in return. I don’t need to be proud of her determination and passion, but I do need her to be proud of herself.

I am a Carer. I’m also part of the Little Hiccups family.

I don’t know what it’s like to have a friend, a daughter, auntie, sister or partner who’s a Carer like me.

I do know what it’s like to be a part of Little Hiccups. To have a two amazing friends who I trust implicitly, a solid brother, four girlfriends like sisters, a friend who’s daughter loves mine, a niece who I admire, a mother and father who epitomises what family is and recently a partner who just cares. All of these people have chosen to share a part of my life with Jenna. I never asked, begged, willed or bought their time or love. They chose it. I’ve spent hours of my life questioning why, wondering when they’ll leave, why they put up with my endless stories, problem solving, updates, cries, excitement and often impatience. Eight years in I still don’t know. I’m learning my job isn’t to question it but embrace it and be her gate keeper. The one who vets all the others we meet, who by watching her relationships with them builds a village of family and friends who she can depend on.

These people choose to be a part of the fun, chaos, exhaustion, despair and love. My life honestly is exhausting. The highs are built on pure joy, relief and problem solving. The lows usually revolve around years of no sleep, all the negative self thoughts and feelings that accompany that level of tiredness, and simply having to watch somebody that you love suffer daily knowing that doing everything you can do sometimes doesn’t feel enough.

I have 90% patience for Jenna. 10% for everybody else and I don’t apologise for it. I work my backside off her her and always will. I’m grateful with all of my heart for the time, support and love we’re given. I don’t care anymore that being a carer has a stigma to some. I don’t care anymore that being a single parent has a stigma too. I care about Jenna, I am answerable only to her, she is my heart, my job and my life. I could tell you all about the exciting things we’ve done together….flying, climbing, skiing, river swimming, cinema, trampolining, kayaking, the places we’ve been, the time we drove to Scotland in our pj’s to watch the sunset, bought our first record…the list goes on. I could tell you all the best bits and sugar coat our story with all of that. Stories of how lucky we are, the brilliant people we’ve met, the kindness I never knew existed. But that’s just a part of it. If you’re not living it I would be stupid to assume that you could imagine the thought of watching your child suffer, handle thoughts of being in this world without them, find the words to support your friends who have similar stories or burst with joy at every single win!  I can only describe our life as a raw version of every emotion.

But if I’m honest I don’t care how you see me, Jenna or our life. My dad once said the world will see you as it wants, and he’s right. Those people in our life have made their choices to know us, you can make yours.

I’m grateful for those who have chosen to care, those who cut us and friends like us some slack, constantly. I’m grateful for the side of people we see that shows they care. I’m not sure I ever really saw that before. It doesn’t matter what the condition or illness a child has or how much somebody understands about it. It does matter that that kindness keeps me and families like mine going when they need it.