"My girl has had two lives, the one before brain surgery and the one after."

My beautiful girl has had two lives, the one before the 10th of October 2014 and the one after.

As Isabelle was rolled into that surgical theatre, I felt relief with what was about to happen. I cried a river of tears over the last 24 hours about what was in her brain, how it affected her and that she could die. All staff were on high alert, which I thought it was too little, too late. I was angry no one listened to me. But now as the doors shut behind me after I kissed her goodbye I was now relieved about getting her fixed and moving forward. I was wrong, it was not the end of the story. It was just the start.

We walked into recovery and there she lay, she opened her eyes and said ‘Mumma’ with a smile. Her eyes were rolling around in her head. The pressure was off her optic nerves which made them dance around like a piece of silk in the wind. She was cranky. They said it was the anaesthetic. The pain was on and off which made for a rough night. She was needing sleep for her brain to heal yet she would only get an hour at a time.

The next morning she said ‘mum I don’t have a headache any more’. I asked ‘did you have one last night?’ she answered ‘No Mumma I always have a headache’ my heart sank and I wished she could have told me before. She thought it was normal. As the days went on, her anger worsened, and her headaches would come and go like a tornado rushing around her head. We were told she only needed Panadol. Oh how I wish I knew then what I do now. In hospital we concentrated on her wound and getting her walking again. We never spoke about her personality. Everyone’s personalities were under pressure in hospital, it was not on our radar.

We got home, that’s when hell broke loose. They gave me a different child. It was not Isabelle. It was a child who was possessed, we felt quite possibly by the devil. She could hit, kick, bite, and swear. She would scream the house down over anything and especially food. Her favourite new word was the ‘f’-bomb. It was quite irresponsible of our neighbours not to call DHS, considering the noise that was generated from a set of tiny lungs. Grace and Finn would scat like guinea pigs into their rooms. There was no reasoning, no empathy, and no care. She was not Isabelle.

She would be happy to go out but then she would scream and lay down in the street. I would have to pick her up kicking and screaming, I was 18 weeks pregnant and hoping my toddler wouldn’t run too far. People would make comments like ‘she’s too big to carry on like that’, or ‘she just needs a good smack to straighten her out’. They would laugh or give dirty looks. If she knew they were laughing she would lose it more. No one actually helped. No one carried Finn to the car for me. One guy stood and watched as I tried to get her into the car seat while she was arching her back yelling ‘you are hurting me you stupid frickin Mum’. He just stood and starred. I really wanted to tell him where to go. What kind of person would that make me, reacting to his insensitivity? It would make me less of a person so I said nothing. Now we know those meltdowns were panic attacks. She never needed a smack.

Her behaviour nearly made me ignore her symptoms of meningitis. Her behaviour was atrocious at this stage. Luckily my beautiful and level headed friend confirmed my instinct which I was ignoring because my urge to kill her was stronger. I walked to the park with Isabelle in the pram. I didn’t even think I said hello to Danni, ‘I’m gunna bloody kill this kid but can you look at her?’ I asked. Meningitis: what can I say, it was bad. What was damaged in her brain was heightened by that bastard of an infection that was trying to kill her and her brain. She came out of hospital scared of the dark, anxious to be alone in a room without me, her mother, but could scratch my eyes out the next minute. Headaches were constant and meltdowns (panic attacks) regular. There was no break in her pain. She was a monster who was sweet sometimes.

Where was my Isabelle? The one who would hug me and tell me I looked beautiful. The girl who would do anything to please you. She loved her siblings unconditionally. She would play and be so happy. She would dance and sing and be silly. She was the good one, the peace maker, the push over. She rolled into the theatre in October 2014 and never came out. I started to mourn for my daughter who was sitting in front of me. I cried 1000 rivers to get her back. I wished that I had the cyst. I wanted to take her pain away. I felt ungrateful to have her alive, because she was not Isabelle. I started to think I was crazy. I was experiencing ambiguous loss, when a person is physically there with a different personality, emotionally and cognitively changed.

We came home from an excursion to the park early one day after Isabelle told a sweet little girl who was sitting up the top of the slide to ‘go down the fucking slide’. I sat and cried at our table wondering if this is it. This is Isabelle forever? Isabelle had no empathy which was my biggest worry. My new Isabelle came up to me and rubbed my arm and asked why I was crying. My heart sank, I could see old Isabelle. She was in there. She was coming back? I sat there looking at her, I then realised I left the dog tied up at the park (again). I had to go back and face those mothers. I was the mother of the feral kid with the potty mouth who can’t even look after her dog let alone her children and she is pregnant! What was she thinking?!

With time, we saw more of Old Isabelle. We discovered her behaviour was linked to many factors. She not only had a brain injury which changes your personality, she suffered from chronic migraines. When they were medicated it made an instant improvement. The same day we started migraine meds was the day we found out she had started puberty. Oestrogen was sending her crazy. Her little body was flooded with teenage doses of hormones which made her act like a superseded version of a teenager. She was having seizures which we did not pick up for six months as I thought they were initially waves of nausea until they worsened. All these things impacted on making old Isabelle turning her into new Isabelle.

As the year progressed we saw more and more of old Isabelle and less of new Isabelle. We stopped the migraines, we shopped the puberty, we stopped her hunger and we tried to stop the seizures. If you met me post operation you would be sick of hearing me say Isabelle used to be easy going, she used to go to bed, she used to sleep, she used to do what I ask, she used to have insight, she used to be able to do things out of her routine. On and on I would go. I would say it to therapists, doctors, teachers and new kinder mum friends.

A year after her operation I said to her surgeon, no one prepared me. ‘She used to be…’, and she stopped me in my tracks. She basically said: This is how it is, she had a major structural damage. You need to find a way to except how she is and the journey she is on. Well, stuff you! I plan on finding old Isabelle and getting her back. It did make me realise that what I was saying was not fair.

The Motherish team confess when they felt like a terrible mother. Post continues after video…

Getting angry didn’t really help but I stopped telling people what Isabelle used to be like. I came to the conclusion I needed to move forward with the Isabelle I have and work on her. Not mourn the one that is gone. It was not fair on Isabelle, it was not her choice. I was defining her by her limitations, not her endless possibilities. No one wanted to hear about it, especially people who only knew new Isabelle, she seemed pretty good to them. The old one was extraordinary, well that’s what I had thought.

But the more I reflected I realised new Isabelle was the extraordinary one. She put up with extraordinary medical complications. Not only did she survive, she thrived and blossomed. She was held down, was inflicted with lumber punctures, PICC lines, MRIs, needles that bruised her and made her limp for days, medications, medications with terrible side effects, uncontrolled seizures, migraines, menstrual pain, fatigue, me pushing her to her limits, me making her do rehab, swimming and dancing to get her brain and body working together again, driving hours in the car to appointment after appointment.

Maybe I needed to lower my expectations and realise she was exceeding her potential while I was dwelling on my old Isabelle. By focusing on what she couldn’t do and how she was not the same was limiting her potential to thrive. New Isabelle is still a challenge, I really wish she would sleep but she is strong, courageous and kind. Her ability to make everyone who meets her feel special was one thing that both old and new Isabelle possessed. The spirit and soul of Isabelle was always the same.

New Isabelle is a special kind of something. She might be fiery and rigid at times but her fierce attitude, resilience and courage has kept her with us. We have learn that she is not defined by what has happened to her brain. She is complex and her abilities are endless. We must not focus on what she can’t do or define her by her limitations. People love her, we love her, even when her little brain can’t comprehend anymore stimulation and it melts down.

Her limitless strength and courage has taught us to be strong. We now focus on what matters and surround ourselves with hope and positivity. She empowers us to be kind and good hearted. We need to celebrate her wins and fight like hell to keep her kicking. Only now we can breathe and be thankful for all that we have because it is plenty.

No one prepared us about brain injury, but I probably wouldn’t listen if they tried. I have had two lives, the one before October 10 2014 and the one after, but that’s another story.

This post originally appeared on Isabelle’s Web. It has been republished here with full permission.

Katie Cummins is a nurse from Yarrawonga, Victoria. She has four kids, a one year old, three year old, and six year old twins.  You can find her on Facebook or at www.isabellesweb.com