It was this day a year ago, the day before father’s day, that Veronika’s hip went from bad to really not good. We were at dancing and I noticed a significant change in her gait(the way she was walking) and her hip were asymmetrical.  I worried about it all day, until it got the better of me, and I decided not to wait until the weekend was over, so I text a video of her walking to her physio. Her reply was quick and to the point, ‘I will see Veronika tomorrow’…..and that’s when I realised just how bad Veronika’s hip was.

So much has happened in this last year…from a couple of new diagnosis, which has meant Veronika has added some new specialist to Team Veronika(those who care for my girl)…orthopaedic, wound care,  paed rehabilitation, and respiratory.

I have learnt more about spica(plaster) care and how to best manage Veronika while she was in plaster from her arm pits to her left ankle

I have learnt way more about pressure sores/ulcers and wound care than one would ever want to have to learn about….I said to Veronika’s orthopaedic surgeon, that the pressure wound was way harder to manage than Veronika in her spica.

I have learnt how serious pressure ulcers are, but I have also learnt that Veronika’s therapists will clear their diary to see Veronika and figure out the best way to manage her pressure areas, not once, but every morning for 4 days, ‘because Kylee, this is serious…’

I have learnt just how important it is for Veronika to maintain her core stability…..I never imagined that Veronika having a hip reconstruction would mean she would lose most of the function in her left hand(her side affected by her hemiplegia)….being in a spica for 3 months and not activating her core muscles for weeks, had a dramatic affect on her left hand.

I realised just how much everything affects everything, and while all your focus may be on one or 2 things, other areas of Veronika’s development suffers….something I had never though of going into surgery.

I have learnt not to be too hard on myself, to not feel guilty that ‘I am not doing enough’ …when I see and read of what other Mum’s are doing for their child…. the therapies, the planning, the alternative therapies they are researching/and or doing locally, interstate and overseas, the supplements, the home programs, the blood tests to check so many different things, the research, research research….for me  just getting out of bed in to morning to do another day has had its challenges, especially after getting up to Veronika sometimes up to 10 times a night to resettle her. I have no idea how I have functioned over the last 5 months on such limited sleep, I don’t know that I should even be calling it ‘sleep’….but somehow I have, and once I made the decision to ‘not feel guilty about what I was or wasn’t doing….it was easier. 

I realised that to sit and play and talk with Veronika, to let her ‘just be a kid’ is sometimes the best therapy for both of us.

I have learnt to forgive myself, and not blame myself for things out of my control….it is what it is.

I have learnt that Veronika is the most amazing resilient child, no matter how many health challenges are thrown her way, she wakes up each day with a smile, even the days she was vomiting from the pain her body was in, she would still manage a smile.

I have also learnt that Veronika is loved and has been missed at school….heading into her classroom and hearing the excitement from her peers when we have visited….‘Veronika’s here Mrs Gralak’ as they are excited to tell their teacher…

But this moment yesterday, almost brought me undone with tears of happiness…..when your girl is at a party and one of her friends comes up, and excitedly gives Veronika a great big hug, and tells her how much she has missed her this year, and really hopes that they will be in the same class next year (instead of different classes like this year)….my heart just melts to know my girl is loved.