There have been two times on this journey with Veronika that the phrase “its just not fair” has crossed my mind.

The first time I thought “its not fair” was after her 1st MRI from when Veronika was only a week old, and the NICU doctor said Veronika had brain injury from the stroke she had before she was born, and that she would never walk, due to the combination of brain injury and  trisomy 21.

The second time was just over a month ago. This last month has been tough, really tough.

A couple of months ago Veronika’s routine hip surveillance xray showed her left hip had migrated quickly. Just over a month ago I mentioned something to Veronika’s private physio during a school visit that was concerning me. She examined Veronika and shared my concern, throwing in a “its just not fair, with all that Veronika’s been through, we don’t want her having hip issues”. I said to her physio, that thought had crossed my mind, that “it’s just not fair” and now you her physio are saying the same, so really “it mustn’t be fair”. 

This last month has seen Veronika’s gait(the way she walks) change significantly. So much that I messaged a short video of her walking to her private physio late one Saturday and she saw her the following day. Following that appointment she contacted her paed, and then  many of the doctors and therapists who look after our Miss Veronika.

Later that week we spent an afternoon in emergency after Veronika indicated she was in pain. Up until that day Veronika had NEVER indicated when she had been in pain.

Fast forward to yesterday and Veronika had an appointment with her rehab physician who comes over from Melbourne. He examined Veronika and said that her hip needs repairing, and we waited to see the orthopedic surgeon who was over from the children s hospital. Upon examining Veronika he agreed that Veronika needs her left hip repaired.

Veronika will need a left  hip open reduction, and a pelvic and a femoral osteotomy. As far as hip surgery goes this is about as big as it gets…..

Following the examination and during the discussion, the orthopedic surgeon hit me with reality…. “I have to be honest with you, and tell you realistically that there is a strong possibility that Veronika will NEVER walk again following the surgery”….that was the moment the tears started. Without  surgery Veronika will end up permanently in her wheelchair at some point down the track, and with surgery there is the possibility she will never walk again. I said through tears to the room full of specialists and therapists, that we were told once before Veronika would never walk, and look at her go now. If anyone can learn to walk twice its Veronika.

So for now I am past “it’s not fair”….and I am onto “it is what it is”.

There is no point dwelling on the thoughts of  “it’s not fair”,  for now “it is what it is”, and lets stay positive and look to the future of giving Veronika every opportunity to walk again post surgery(we don’t have a date yet for surgery). Look at that smile, how can we not give Veronika every opportunity…with a mix of love, determination, tears and a whole lot of therapy let’s give Veronika the time to fulfill her limitless potential.