“What Would You Do Without Me?”

This is a phrase that Squidglet says to me now, every time I reach out thankfully for her. It is instinctive, because she has heard me say it so many times as I wrap my arms around her, so grateful for her help. Because I need it. It would be better if I didn’t, but that is not the reality of our family. Sometimes, I think she knows that better than me.

My eldest daughter is now 6-and-a-half. One parents’ evening last year, her teacher told us “I can’t treat her just like a five year-old. She wouldn’t allow it, she’s too mature, it wouldn’t be right.” I was so proud, but still had the guilt of not just allowing, but maybe even forcing this little girl, clever and kind, to mature beyond her years.

I have had a few people say to me over the years “You expect a lot. You have to remember she is so young.” Guilt always pricks. But the more aware I have become of what her family. her world is by virtue of having a disabled mummy, I realise that the only person in the world whose opinion matters on this subject, is Squidge herself.

When Kev was hospitalised last year, Squidge and I were incredibly stressed. I thought I was shielding her, but the truth was, there was too much for just me alone to keep going, so Immy was having to help me with more. By the end of the week, we were both tired and often in tears. I didn’t feel like enough and Immy finally blurted: “You’re asking me to do too much, Mummy.”

My heart was broken. But that was her truth and as her mum, I believe it’s my job to hear it for that. If she is brave enough to own it, she deserves me to hear her. So, I called our local family services and said I wanted her to have a young carer’s assessment.

Because that’s what she is, my little Squidglet. She is, particularly in times of health crisis for our family, a young carer. I’ve hidden from it for a while, because I have been ashamed. I have always believed that as a mum, it is my job to do it all, to get it right. But that’s too much of an expectation for one woman. And the truth is, I am not just a mum. I am a disabled woman and I am doing my best. I do care for my daughters, with my heart and soul. It is not my daughter’s job to care absolutely for me, but I do not need to reject her care outright, because she is a caring soul.

But yes, she is a young carer. She is my right hand girl. She does not need to run our house or anything like that, but some days I cannot move, or because I have fallen, or done too much or slept funny. Sometimes, I’ll need her to grab things from around the house, or keep her sister busy, or bring me painkillers, or put her things away. Things are busier for her if her dad’s in hospital. There’s little I can do to migitate that. It’s unfair, but it’s our truth. This is the little girl that does everything she can to help because that is how she is made.

She has taken to making sure everyone has “snack plates” when she hears me getting emotional, to make sure I have eaten, that Gabby has eaten. She will give me a cuddle, ask if I need a drink, or suggest a mindfulness meditation. She is such a wise and caring soul. I want her to carry that through her life as a cherished part of herself, not a burden, which is why the assessment is important. Because my girl, she deserves to know that she’s not alone, to have other people in her corner, to listen should things get too much.

I refuse to deny that they will. That would be disingenious to Squidge’s unfaltering support.

This week, I was feeling incredibly dizzy, scared to be alone with the kids, wondering if I could get them home from school safely. We made it, but I managed to fall from the toilet. I cried with embarrassment as I stripped off, asking Immy to bring me my dressing gown so I could cover myself. She brought it, saw I was crying and wrapped her arms around my neck for a hug, unfazed by my nakedness.

As I got dressed, I heard her talking her sister through the things she was putting onto a plate for me to eat because I wasn’t feeling well, including a high sugar juice, which was really helpful for my dizziness.

“Oh Immy, thank you!” I said when she presented me with the plate, pulling her in for a hug.

“What would you do without me?” she smiled.

“Oh. I just don’t know. I would be so lost and lonely. And so bored. I love you.”

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