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Longtermcaregiver

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Are you okay?

I do not want this December to be like the last one.
I do not want to talk about vitamins, vaccines, and the virus.
I do not want to worry. Worry about the people I love, the people I know, everyone in my life.
I do not want to pretend to be happy, and I do not want to live in sad.
I do not want to make plans and have them turn to sand.
I do not want to dig any deeper to find joy.
I am not okay.

I have been here before.
I have had these feelings before. The reasons were different.
I know I have been here before.

I planned and packed for the holidays. In ways, my friends could not understand.
I unpack. I set the room. Her own duvet turns it into her own bedroom.
I remembered the spare headphones. I remembered the plastic stim toy. I bought the must-have foods.
I re-organised most of the furniture. The wheelchair must get through.
I arranged the activities in advance and prepared everyone.
I knew where the nearest hospital was, and I packed the medical reports. Just in case.
I cooked. I served. I entertained.

I did well.
I got to it all.
I think it will be okay.

I forgot to pack my food (I don’t eat meat), my book and well a couple things that make me…me.
It will be okay.

I wake. I listen. She calls. I go. I calm fears I do not understand. 
I go back to bed. I sleep. 
I wake. He coughs. He quiets. He coughs. He reaches for his asthma pump. I hold him. 
I feel the morning. I tip-toe out of the room. I set up for the day ahead.
I see them, my younger children, racing on the shoreline. My heart swells because they are mine.
I smile. I wave. They enjoy the beach.
I sit here. I hold her hand. The sand and the wind: too much for her.

I'll go to the shore tomorrow.
I'll go and dip my toes.
It will be quick. I’ll be back. They will need me again.

See,
I've felt this before. I felt all this, and I felt nothing, all in one go. But then
I learnt that all and nothing can work themselves out, when 
I dared to stop and ask them, what are they all about?
I heard them say: we are trying to let you know it’s okay to not be okay. 
I asked in a shaky voice: what is the way to being, “not okay”, as you say?
I heard them soothingly whisper: Come into the day quietly and softly before they all awake. 
We will teach you what it means to not be okay. 

I woke without the alarm. I started to write.
I wrote to God. I wrote to my heart.  I wrote for all the ones like me.
I find sometimes, I bake. Sometimes I sing. Sometimes, I just sit and think.

I come into the day quietly and softly. I marvel at how much I pack into that short space of time, that makes me…me. 
I'm okay not being okay. Are you? - Desirae Pillay 2021 

Desirae has three children: Savannah (25 years), Talisa (19years) and Eli Michael (13 years). Savannah was born when Desirae was eighteen years old and she was a single mother for a time before marrying Michael. Savannah is autistic and is a person with cerebral palsy. Michael and Desirae care for Savannah as she cannot live independently. Desirae worked as an Assistive Technology Advisor in the disability sector, served in the autism community, and is now employed in the child safety sector. She writes for the purpose of sharing different perspectives and to encourage a thinking line around being kinder and more considerate of other people’s experiences in the areas of parenting, childhood trauma and disability. She writes because she knows that Faith, Hope and Love abide.

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