Yesterday morning I dreamt of RD. It wasn’t like the dreams I’d have of him sometimes when he was alive, where he could walk, or tell me he loved me with words but I guess still as much of a flight of fancy.
He was in a garden, sat with a toy. A warm day, but not too hot or sunny. His favourite kind. I went over and sat next to him. He rested his head on my knee and told me mumumumuum just as he did. I could see and touch the beautiful curve of his nose, the light dance behind his eyes. Just as it did. And I thought “they’ve got it wrong. He’s still here. We’ve got a little longer.”
I was angry I had to wake up. Squeezed my eyes together and tried to empty my mind but the elephantine rumble of DD running through from her room broke through. And I struggled not to snap at her, it’s not her fault. Let her clamber on top of me, knees and elbows clashing against my bones or unmentionables. I was still between two places, which is generally how I am at the moment. Trapped in thoughts and dreams and sadness over RD. Snapped into the present by a demanding nearly four year old, puppy and the fact that life has to go on.
Real life, the one that involves wedding anniversaries (yesterday), birthday parties for DD and her new preschool classmates (Saturday) and holidays (today). Where I battle the overwhelming desire to just stay in bed because I know it helps to get up and out. To talk to people. To play a character at times. To come home again and still feel the raw shock that RD isn’t here anymore. To pore over photographs and videos, wanting to climb inside. Lamenting that there will be no more.
It’s exhausting. I realise at times that during a thought of him I forget to breathe. I talk to walls as though he’s just on the other side. Tell him I miss him and love him.
I walk past his photos everyday, they’re everywhere in the house. But in one moment I’ll have to go back to touch at the image of his hands. Miss them carefully inspecting a toy, trying to locate a button. Such long skinny fingers, soft as silk, inquisitive.
I miss him when I realise we are no longer carers. Absence marks the whole of the person, the good, bad and ugly. To pack for a holiday with RD involved 24 hours prior to leaving the house of preparation. To be honest, it would be on my mind for weeks. Where would he sleep? Would we take a wheelchair or pushchair- one more preferable posturally yet the other better for getting out and about. Calculating how many medicines, nappies and feeds to take. Then adding in extra for scenarios where he would be ill- extras of everything plus pain relief. Feeds replacement. Chargers. Toys. Seating. There wouldn’t be a square inch of the car not utilised.
But we’d get away and generally all would go well. Or maybe overall. I don’t know anymore, I became accustomed to allowing the good moments to overwhelm the hard. Because that’s what parent carers do. Adjust to your new normal.
And our new normal is three cases and some food. Maybe a few toys, general entertainment for DD. We can get in the car and stop where we like. Not worry about either carrying RD or unpacking the car to retrieve whatever form of wheels we’d chosen for him. Not to have to go somewhere that wouldn’t be too busy, would mean we could put him on a longer feed and somewhere we knew had changing facilities. This still makes me sad. I miss us navigating that, trying to be inclusive as a family.
DD made sure she made us know that in fact it wasn’t going to be easier at all, and set herself on a mission to be as difficult and challenging as possible as we packed. And made a song, a tuneless song, out of Are We Nearly There Yet? on the 5 hour journey. And that was a highlight. You’d think I’d be patient, calm and grateful for my living offspring, given I spend a lot of time worrying about something happening to her. But no, I can confirm I lost my shit several times.
I was having a chat with a wonderful woman dealing with a very similar scenario, in fact her son passed away within a day of RD. Because of our children’s disabilities, you learn to live day to day. To not project too far forward. So in a way, as time moves forward, I won’t be grieving predictable events- learning to drive, graduating school, getting married, having children. And in fact, their future that could appear daunting in its planning; who will care for you when I’m no longer able to? has gone. It’s not saying in any way it will be easier, it’s just to highlight the yin and yang of this life we lead.