BY TIFFANY TREGENZA
On Friday a psychiatrist declared that I was ‘unstable’ enough to be accepted into their services and join my daughter, who has been taking Lovan – a deceptively alternate name for Prozac.
It’s taken just under six years for Ivy’s immune deficiency to get the better of us. And by ‘us’ I mean the family. All nine of us.
It’s okay. We have been struggling lately. Right now I’m relieved that we can share the pain and anxiety of living with a seriously ill child with others. It feels like being carried and as though I can rest for a while.
When Ivy was two and a half years old, she was diagnosed with a primary immune deficiency. But we’ve been dealing with it since she and her twin brother were born in 2005, and in reality it’s much more complicated.
Ivy has felt acutely ill for a large portion of her life. This means hospital at least once a month, and sometimes for weeks at a time. She is often hospitalised with serious and life-threatening illnesses like pneumonia, sepsis and adrenal crisis. These can start from something as simple as a cold, and escalate at such a rate that one day we are holidaying, and two days later we find ourselves in emergency, contemplating bilateral pleural effusions and the impact they could have on a small girl.
It means being isolated over the winter months, when the chances of contracting a cold or flu are high. We have to limit after school activities for Ivy’s brothers and sisters, which means altered friendships because they can’t commit to much until they know for sure that Ivy will be okay that day.
We have to find ways to cope with the fact that the kids sometimes come home from school to find that we have had to race to the hospital in the middle of the day. There are often nights when everything goes pear-shaped because Ivy suddenly goes downhill.
They tell me that it’s the worst part about all of it – never knowing what to expect. I agree with them.
It’s hard not being able to plan because everything can change in a day. For my husband, it’s the stress of juggling family, work and income, because when Ivy became unwell I had to resign from my job as a midwife to care for her. There is no down-time for him.
It’s part of our reality to always be on high alert. For me, being mum to a large family is wonderful, but it’s challenging. Add in a sick baby and life has to be redefined.
There are days when I think I’ve lost the person I was. Stress is a constant and sometimes sadness is the only emotion I can identify with.
I worry much more than I used to – about the kids, about how Ivy will get through everything, about my marriage and my family. I worry about procedures and tests, and how I am going to help everyone survive this life without coming out at the end, totally screwed up.
My normality feels so different to my expectations. A day of stability, where there are no issues with Ivy’s health is a godsend.
A lot of the friendships that I had formed are no more. People find it hard to invest their emotional energy into something like serious illness when they haven’t lived it. The thing about friendship is that it’s a two-way street and I couldn’t give back all that I was taking.