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Mamamia Cares: 'Sharing the pain with others, means that I can rest for a while.'

Ivy was diagnosed when she was just two and a half, but Tiffany’s family has been dealing with her illness since she was born.

 

 

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.

“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.”

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.

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It can be a very lonely existence and it’s hard to stay optimistic sometimes. We’ve adapted and changed as best we can. Dave and I work hard to try to keep things balanced. When everything gets too much, we try to take time out.

After a hospital admission, we’ll plan days together as a family so that we can debrief and regroup. We also plan days where we spend time with the kids individually, so they know that no matter what, they are all important.

There have been some really happy days in there amongst all of the bad times, and we are thankful for every one of them. Every day that is a good day for Ivy is a good day for all of us.

One of our absolute highlights was when the Starlight Children’s Foundation granted Ivy her wish to dance with the Australian Ballet at Sydney Opera House.

There was a lot of anticipation and planning that kept our days light with a level of quiet excitement, always buzzing in the house. It helped too, when Ivy had to have an admission or a procedure. It gave all of us something to focus on.

The day itself was magical. Seeing Ivy so happy was infectious and the whole family was included. It was a wonderful time together – time to relax and time to feel normal, without all the usual stressors. It is an experience that none of us will ever forget and something for Ivy to hold onto always.

“There have been really happy days in there amongst all of the bad times.”

I guess, when you are on a journey like this you can spend a lot of time feeling sorry for yourself and admittedly, sometimes I do but you also learn to take the simple pleasures in life and run with them. You learn to be thankful for the people who help you make the best of what life offers.

Being on the receiving end makes me want to give back in any way I can – raising awareness, raising money, helping others and that gives me a sense of worth too. Finding the good in each experience helps in being able to pick myself up after I’ve been knocked down.

We’ve met so many amazing people along the way, had so many opportunities we may not have had otherwise, and made connections with others travelling similar paths.

Having a support system is important. For me, much of the support I’ve received has come from the internet – mostly through the online community I have found through writing my blog, My Three Ring Circus. Some of these people have followed Ivy’s story from the beginning.

I would never have imagined life could be like this when we were thinking about starting a family, but I can try to make the most of it and appreciate all of the good things.

Do I wish that it were different? Sometimes, but if that difference meant a world without Ivy, then I would never change a thing.

On Friday, 3 May the Starlight Children’s Foundation celebrates 25 years transforming the experience of hospitalisation for seriously ill children around Australia, and aims to raise $1.5 million to help the foundation ‘Shine On’ for another 25 years.  Learn more here.

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