The morning sun paints the dining room, illuminating the bright yellow walls. I sit at the table with my freshly made cup of tea.
My daily routine is so vastly different these days. Sometimes I am unsure what it is I should do or should be doing. I remind myself to drink my tea while hot, something I would rarely have time to do before.
I think about the day ahead of me and how much time I have to fill. I cannot remember ever thinking about that before Ethan left us. I find myself missing the constant phone calls, emails, messages and appointments, which I complained about almost daily.
I wonder about my ‘job’ now. I was a carer; I am no longer that, so, what am I?
Am I looking for a job?
Am I looking to educate myself further or retrain?
Or am I a stay at home parent?
I don’t know what I am right now. I feel like I am a mom without all her boys, and I know that feeling will never change.
I fought long and hard for the rights of Carers on this island, but here I am, living the questions I have asked many times over – ‘What happens to the Carer when the caring role is over?’
I don’t know the answer to that question.
I am in limbo.
I have lost my beautiful son, whom I cared for, for twenty-four hours a day. He was my world, and I was his. It is a privilege to have been his Carer as well as his mammy. Despite not having enough respite, respect and supports from our Government, I never wanted to stop being my darling boys Carer.
Now, I find myself thinking about the Carers who are no longer fulfilling such a vital role.
I want to be like those other Carers who have been able to get back into the world of work or education or do a training course. Or other Carers who have become advocates for Carers or those with additional needs using their own unique experience. I admire them so much because I know that took strength and bravery. I know they try to move forward, so they don’t have to find ways to fill their days.
I don’t know if I will ever find that courage to enter into a world I had so long forgotten about. And, honestly, I don’t know if I will ever want to.
Ethan has been gone seven months, three days and twenty-three hours.
As my tea cooled, I took out my laptop. My phone buzzed with a memory of Ethan, which made me smile as I could vividly remember it despite there being no picture. It was something I had written ten years ago ;
“Ethan was supposed to be in bed. I heard a noise. When I opened the door, there he was. His Disney ‘Wild West Show’ hat on and a bunny mask covering his face, ready to see Gareth( his support worker). Gareth is collecting Ethan tomorrow morning at 11am. I had to close the door to compose myself before explaining to Ethan that he has to sleep in bed before Gareths visit.”
I laughed out loud at how excited Ethan always was for the next adventure (even if it was just a trip to the shops).
It was there, and then I decided I should try and look at my next adventure, to find something to fill my days with while bringing my little man along with me.
I began to draft my second book while a Robin came to the door. The sun continued to shine despite the large drops of rain falling from the sky. I knew my boy was still with me.
You can purchase my book ‘Ethan & Me’ by visiting my store here