When you and your family are side-swiped by something like HSV Encephalitis, it is REALLY hard to find pleasure in anything. It is so hard to breath, eat, shower and sleep, so the idea of laughing or pleasure seems, well absurd!
But here is the thing. You need it. I needed it. Matilda needed it too. Reuben needed it in buckets. Laugh, smirk, enjoy. Mix your grief and fear up with a little play and laughter or comfort, if it happens to find it’s way to you.
Here are some of the ways we did it!
Hipster barista consultant
One of the consultants (head honcho doctors) in intensive care had a beard, moustache and clothes that were groovier than I would normally expect in that setting. I am a massive fan of a double espresso and the minute I clapped eyes on him I wanted to pretend to order a coffee.
These were desperately sad days, full of uncertainty and bucket loads of fear. Each time the urge to order came over me, I had to stifle a giggle. I had a cough and needed to gown up and wear a mask. You can see where this is going…I too had to become a hipster-barista too!
I can clearly recall the first time the therapy dogs came to our room on the wards. Matilda had been extremely agitated and distressed all morning and was now asleep. We were both exhausted. A gentle knock on the door and there was our therapy pooch. I was about to ask them to return another time as ‘the patient’ was sleeping but then checked if it was ok for me to have a cuddle. I sat on the floor and wept into his soft furry neck.
Dr Cecil Hellman describes how a Navaho friend explained that her grandfather, a traditional healer, told her that when you are exhausted from healing others you should ‘…stroke a horse or a newborn baby. Both of them are so full of energy. You will feel much better if you touch them, straight-away.’ (Suburban Shaman p166). We didn’t have a horse on the wards but lots of lovely dogs.
Matilda and I absolutely loved visits from the dogs and their owners. I loved that these compassionate people saw in their pets a special gentleness and innately knew that people like us needed a bit of a furry cuddle.
Visits from friends and family
Matilda was easily agitated and sleeping a great deal. Initially it was hard to imagine her being with friends. Every time I mentioned it she said no. Then her cousin who is about the same age came for a visit. They don’t know each other well but Grace was a gem. She quietly played with Matilda or just lay with her on the bed watching TV. When Matilda slept, Grace read her book. Soft, gentle and easy.
This made me brave enough to feel a visit from a close school friend would be OK. I was so worried that it would highlight for Matilda the extent of all that she had lost. Our wonderful friend Kate suggested that she bring her daughter Sia up during a school day. This was some offer as its a pretty long drive (up to three hours in bad traffic!) and Sia missed some school. They would stay all day – play simple games, walk to the hospital garden for a picnic, do therapy sessions together and then sit quietly as Matilda slept. Sia was a great help in enabling Matilda to have baths without tears and help us all envisage a happy social future for Matilda.
Lady Cilento Children’s Hospital had a range of volunteer services to support the children and parents. These angels in ‘green vests’ would show up in the evening, just when I was losing the plot and help us through the last few hours before bedtime. I would explain about Matilda’s language issues and one volunteer would generally be on ‘her team’. They played games, did craft or just blew bubbles.
Having other people in her life really took the pressure out of us being together 24/7 for so many months. It is invaluable to let other people help you. These play sessions let Matilda stretch her wings, not just talking to Mum, Dad or therapists. The time to just sit and not be fully ‘on call’ was wonderful after long days and often very sleepless nights.
So if a little fun or pleasure finds a wee crack….invite it in, one tiny little sparkle at a time.