Twenty Years On

Our little granddaughter recently had her first illness, viral bronchiolitis. It was no fun for anyone involved. Anyone who has been in a household with a sick baby knows how disruptive and exhausting it can be. I went down to spend a few days with them and while holding her and thinking how unfair it was for little ones to be unwell it struck me that this was the same age our daughter was when she was diagnosed with glaucoma. Given that our granddaughter and her aunt’s birthdays are only two days apart I realised that it was indeed an anniversary of that diagnosis and all the fear and worry that followed.

Twenty years ago, we took our beautiful little 9-month-old, Ellen, down to the Royal Children’s Hospital for what we thought was going to be an appointment to investigate a pale port wine stain that was on the right side of her face. We were not terribly worried about it but had been encouraged to see a specialist in case it was better treated earlier rather than later.

Earlier on we went to our family GP, Dr Jim, for a referral. He noted that one of Ellen’s eyes was larger than the other and included this on the information that saw us receive an appointment with a geneticist on the 19th of May 1998. This wasn’t what we expected for a birthmark, but what did we know.

The appointment with the geneticist ended with her saying their main concern was with her eye. She lead us through the hospital to the eye clinic where Ellen had her first appointment with Dr Andrew Narita. Andrew examined Ellen and said he believed she had glaucoma and would require surgery. He said he we could pick which of the next three Tuesday mornings the surgery would be. We were in shock and chose the following week. That was the start of weekly trips that turned into fortnightly, then monthly and then 3 monthly.

Being May, this coincided with cropping. We would travel down on Monday afternoon, have our fasting baby at the hospital at 7am for a general anaesthetic, she’d be sick, we’d hopefully be discharged mid afternoon and we’d head for home. Vern coped by doing what he knew, he worked, and there was plenty to do. I can only say that I didn’t cope. I tried to do what I had to for the older kids. We were so fortunate to have our parents nearby and keen to help us however they could.

I won’t go into all the details but the weeks that followed that first appointment were awful and glaucoma was the least of our worries. I only wish I’d known then what the coming years would bring. That they would be nothing like the possibilities that had been presented to us in those first weeks. Possibilities that broke my heart. I thought I’d hidden my fears from our older children but later I found out that they could hear me crying at night.

I wish I had known then what I know now. All those visits to the hospital, all those general anaesthetics (all but the very last one making her so sick after), all that worry. Unfortunately, that isn’t the way it works.

Now I know that that initial surgery is still working, although we were told to expect it might only last a couple of years. I know that while we were told that pressure checks would be required every three months for the rest of her life they have been 9 monthly for over 10 years. I know that all the possible effects we were told of never eventuated. Twenty years on from that initial diagnosis our gorgeous girl is approaching 21, studying to be an Occupational Therapist, is kind, caring, nurturing and the best fun to be around.

Sometimes I wonder if I have learnt anything from this experience. Worry still seems to be my go to option when faced with uncertainty. Part of that I blame on genetics, the worry gene came directly from my dad. I think the main permanent change for me in this experience of helplessness, fearing for one that I love so dearly, was empathy. I was always an empath but now have empathy on steroids! My life had been so easy. This was my first insight into the true, aching pain that can come from loving so much.

If you are going through something difficult, and heaven knows there are things more difficult than what I’ve shared, please don’t just try to stoically face things alone because there are people around you who want to help. If they know you are in need your tribe will rally. They will love you and you will know that you are not alone.

Ellen and Mum Us