Last week Matilda and I returned to the children’s hospital for a range of tests over three days. As we walked in an ambulance raced out with siren screaming. From that moment I could feel myself really struggling with a mixed bag of emotions, many related to all those months we have ‘lived’ there. Matilda on the other hand seemed blissfully unaware. It seems that she mainly recalls the last weeks and is happy to engage with the professionals despite becoming extremely tired. Lucky our hotel had a pool and spa!
Matilda drawing a dot-to-dot at Molly and Desmonds cafe near the hospital.
Write a list of questions or ideas
I always recommend to my clients that they write a list of questions or observations when they are visiting medical professionals. It is so easy to become bamboozled.
So I followed my own advice and wrote an exhaustive list of 3 items! I then left the list at the hotel and by the time I had juggled questions from three professionals, Matilda’s increasing agitation from being disinterested and my own emotions, I managed to forget the most important question about her seizure medication!
Note to self – write the list AND TAKE THE LIST!
Getting support for you !
It was only when I was in the hospital world again that I realized what an enormous mountain of thoughts and feelings I was dealing with. If the hospital or service offers you a chance to debrief with a counsellor or social worker, I would strongly suggest you leap at the idea even if you are a shy or very private person.
There are just some things that it may be more comfortable not to talk about with a friend or family member. Watching a loved one suffer, fearing that you will lose them, being isolated in a hospital away from loved ones and normality or just observing all those medical procedures is traumatic or can be traumatising.
To stand strong for Matilda and my family, I need to heed the warnings of professionals to look after myself. I have even started to think about wearing a helmut when surfing after whacking myself in the head yesterday. Take care y’all.
Matilda after HSV Encephalitis 
What an amazing resource you are creating here. As you say, if even one family finds this and knows they’re not alone, how totally worthwhile. Nicole you write so well you should consider turning this into a book (in your spare time). Thinking of you all often and wishing you strength on the bad days and joy on the good ones. xxxxx Iluka Mob
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Hi Nicole,
How amazing that you are able to use your insights and experience to help others – thinking of you and sending you love.
Deeds x
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Dear Nicole – yes, wonderful and draining and all the rest that goes with this adventure. One day perhaps you and Matilda will write each side of this story… For now each small gain must be so rewarding. I look forward to reading your posts each week and now I’m hoping to hear about some little treats and joys that your creative brain might come up with – for yourself! These will also be inspiring for others!! love, Kerrie Barnett
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