SUPPORTING THE UNCERTAINTY***

By Author- Alisha Prien

Today I had a friend reach out and ask for advice on her sister-in-Law who had just had a baby born with the Virus which gave Spencer his disability (CMV). I was asked on my journey and how the family could best support the mother during this difficult time. This got me reflecting to when my son was born….

It was all a blur really. In all honesty I’m grateful that I wasn’t aware of my son’s health during the pregnancy, otherwise what a stressful pregnancy that would have been. The first 6 months went fast, and I honestly don’t remember a lot of it as I just went into auto pilot mode to cope with everything. The uncertainty of it all was one of the most difficult parts to deal with. We received news of the virus after he was born at just 3 weeks old, I remember at this point denial was my first thought. I was a young healthy, fitness fanatic mum…. how could this happen to my child? It just didn’t seem right, it didn’t make sense. It wasn’t until after some scans; MRI, hearing test, eye test that reality came crashing down.

I remember walking towards the doctor’s office and looking in to see two other nurses and a doctor in there with a tissue box. My heart sank, I knew this meant bad news. The doctor pulled up an MRI image and pointed to all the grey matter around his brain. He explained that this meant the Virus had done some damage and would leave Spencer most likely with a Disability of sorts and health issues. Once I heard that I switched off, I broke down in tears and realised that this was it, the end, my baby was a sick and unlucky little man.

The uncertainty was the worst, all we could do was watch and wait to see how Spencer would develop and what damage had been done by the virus. The waiting game was hard, I remember constantly staring at him hoping for some sign, some miracle that he would be okay and that the scans were wrong. The only thing that kept me going during this time was the love and support from my family and friends. They all grieved with me, and when I needed to cry, they just sat there in comfort. There really was much anyone could say, it was in Gods hands and out of our control. For 6 months I just focused on doing whatever was necessary to keep my family afloat. I also had a nearly 3-year-old daughter at the time who still needed me, so there really was much time for grieving. I took each day as it came, and each challenge was faced with the help of my loved ones.

If there was any advice I could give to friends and loved ones when it comes to offering support to the parents faced with the uncertainty of their child’s fate, it would be just present. Your presence and love are enough. During this time there will be a lot of shared grieving and tears, all you can do is take each day as it comes and look forwards not back. Celebrate the wins and mourn the loss. It is during this time that we need the love and support the most.