Paradise Kids

Due to Jas getting really tired, headaches, nosebleeds and feeling dizzy, it was ordered at the Mater Hospital that she should have a MRI on her brain. I wasn’t prepared for what was found. Jasmine had a 2.2cm Arachnoid Cyst on the lower right side of her brain which was causing her to feel and act the way she was.

Because of its size and the rate the fluid sack was building pressure on her brain, the prognosis was that she had until Christmas or she would shut down in all her motor skills and sensories. Meaning she would be a vegetable. Removing the cyst wasn’t an option.

By October they decided to insert a shunt on the left side of her brain, piercing the cyst to drain it, therefore relieving the pressure. The cyst will hopefully shrink. The specialists explain that the worse would be that she wouldn’t be able to talk or walk, have problems with her motor skills and speech seizures.

Jas had her operation in October. She was in hospital for 9 weeks. The shunt is working but not really draining the cyst. It’s taking other fluid from her brain which means Jas couldn’t sit up or walk and she would pass out and had headaches.

So when we got home I was feeling angry, still in shock and very alone. Jas was housebound, scared, angry and very hurt. She thought the op would make her better. Instead she was more limited than before. It was my worst nightmare because the doctors couldn’t say either way if I was to lose my child or not. I was to wait and see. Having no family support is very hard.

I had had involvement with Paradise Kids before and they did an awesome job getting me through my divorce. So I phoned them out of desperation and was told about the Illness Support Program.

Lizzi Swatland came to my home and met with Jas and me. I explained that as her mother I couldn’t comfort or even speak with Jas about her illness yet I knew she needed to express her feelings of anger and was she dying. Lizzi introduced Denise as Jas’s ‘buddy’ and in the first 3 weeks the change in Jas from being angry, confused and crying and feeling it’s the end to her being confident, in control, acceptance of where she is at present and understanding it all. It’s just amazing.

Even when she goes to hospital she is able to tell the doctors how she is herself. Fear is a major part of not healing but with Jas being able to work through that with Denise doing craft, music, meditation and pictures of her body for Jas to point out where her illness is, instead of being all over the place, she was in control.

Jas is still healing and may have to face more surgery. But as she says, she is empowered now…bring it on! She’ll live. I also felt empowered by her. We were able to have time and share our feelings together. At times I believe she now comforts me and is stronger.
Lizzi also introduced me to Dina, a counsellor who I see every week in my home. My time with Dina is invaluable and I have dealt with a lot of issues as a parent through her support and guidance. I have been renewed in that I now deal with all aspects of my life and the children even accept Jas’s illness.

For the Illness Support Team – Lizzi, Dina and Denise I can’t express enough what you have given Jas and me. In a world that suddenly became dark to a world of light and love and your continual support always on call. You are very special. Thank you.

When we spent time in hospital I met a lot of other parents in similar situation as me. You never expect any of your children to be in a life or death situation or a long term illness. It is the worst fear all parents have.

I recommend the Paradise Kids Illness Support Program to all parents that find themselves in a similar situation and also for hospitals to support this as well. Many a time at hospital I found myself sitting outside crying, totally alone, needing comfort for myself but also for Jas. Now after experiencing the Illness Support Program, we feel totally confident and supported no matter what happens. Every time we visit at the Mater we tell them about the program. It changes everything for the better but mostly your child.

Iris Rogers