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.
‘I don’t know how you do it’ or ‘how do you do it?’
I have had this said to me many times over the last 7+ years, but the months since Veronikas hip reconstruction on April 16th, I have had heard this a lot.
So much has happened in the last 4 and half months, so many blogs have been composed in my head, I just havnt had time to sit and type my thoughts….
To be honest the last 4 and half months have been tough, incredibly tough. Those of you who have spent time in hospital know its tough, it’s even tougher when you are spending time in hospital in another state away from family and friends, and that’s even before you get to any of the medical ‘stuff’
It can be incredibly isolating, being away with your child who has undergone major surgery. The days are long, the nights are longer…..’how do you do it?’
Friendships are formed, friendships that may only linger for a while, others friendships that will last a life time….frienships that are formed ‘in real life’, other hospital Mums who are there with their child….other friendships that are formed ‘in the world-wide web’, no matter what time of the day or the night, when you need a chat or a vent, there is always someone who will respond to your post in an online support group, for me these groups are through Facebook….
However this can also be more isolating….
You see you ‘log on’ to post in one of the groups, the highs or the lows of the day, the challenges and the amazing things your child has accomplished through the day….
as you start to scroll through fb you see all the things back home you are missing….
so the thing that keeps you connected also has the ability to make you feel even more isolated…
it also has the ability to make you frustrated….
as you sit by your child’s bed, hoping and praying that you made the right decision to hand your child over for a surgery that ‘realistically there is a strong probability that Veronika will not walk again following the surgery’….and then there are the complications that follow the surgery and you question even further….
all the while you scroll through fb and you see people’s ‘first world problems‘ and you sometimes think….‘if that was all I had to worry about my life would be much easier’…but then I think, it is what it is, and that is that person in that moment, and that is their journey…
Then there are the special friendships that are formed around hospitals….friendships that you know will last a life time….
friendships that when their child is unwell, really unwell your heart breaks…and you wish you could be there to help your friend, to sit by their child’s bed, and hold their hand and make it all better for them…and that is ‘how you do it’ because those friendships that have developed over the years are the ones that keep you going….
How do you explain to your 6 year old what’s going to happen tomorrow morning the 16th April?
This is something that I’ve spent a lot of time thinking about over the last few weeks.
The answer came from school in the end….as Veronika and I look through this book her teacher and classmates made. Her peers have all created their own page and her teacher put it together into a book that one of Veronikas teacher assistants delivered last week. Each page has a special message f…or Veronika, it’s full of rainbows, butterflies and love hearts. 3 of Veronika’s favourite things.
Tomorrow morning at 7am we will take the yellow lift to level 3 to surgery reception…..Sometime tomorrow morning Veronika will undergo a left hip reconstruction. This is as big as it gets as far as hip surgery goes. Veronika will then be put into a spica, which is a plaster cast from her waist down. We have been told recovery will be long and slow. We have also been told that ‘realistically there is a strong possibility that Veronika will not walk again following this surgery’. I have let the surgeon know that ‘we were told after Veronika’s first MRI when she was a week old that she would never walk, if anyone can learn to walk twice its our Veronika’. I BELIEVE Veronika Will Walk again. We have a great medical team supporting us, we have a massive family and friends team supporting us. We are blessed that when our daughter goes through this process that we know there are so many people sending their love, prayers and thoughts our girls way.
So tonight Veronika and I talked about tomorrow, and I explained as simply as I can what will happen.
#believe #veronikawillwalkagain #hipreconstrution #t21 #cerebralpalsy #RCH
Thursday 18th December was the last day of prep for Veronika
and what an amazing year Veronika has had at school this year
Veronika learnt to be an independent walker
Veronika started to read some words and she could sign them
Veronika continued to develop friendships with her gorgeous peers
however Thursday was a somewhat emotional day for me
as I watched Veronika walk into the classroom and wander around saying hello to her teacher, TA and friends, I was incredibly happy and proud to watch her, as these are 2 skills Veronika had developed this year, to walk and say ‘hello’
I was also filled with incredible sadness at the same time, watching my baby walking around is something that I will never tire of
something we all just ‘assume’ our children will do
part of me was incredibly saddened as I was watching Veronika walking around, we are still waiting for the date for Veronika’s hip reconstruction. Originally I was told December or January…
so if Veronika’s surgery happens during the school holidays,
the surgery that I have been told there is a realistic possibility Veronika will NEVER walk again after, on Thursday Veronika’s last day of prep, may of been the last day ever that Veronika will walk into school
and my heart broke
a skill that we have worked so hard to achieve
could all be taken away, by a surgery that Veronika needs to *hopefully* prevent her hip from dislocating.
without surgery Veronika will end up permanently in her wheelchair, so we need to give her to opportunity to learn to walk, for the second time and have the surgery
but standing in Veronika’s classroom thursday morning my heart and my head were a mess
I was so proud to see her walking around her classroom, something 10 months ago on the first day of prep she couldn’t do, but knowing that there is a possibility that was the last time Veronika walks into school was truly heartbreaking
as I walked back to the car, I knew I have to BELIEVE
to have FAITH and BELIEVE
that post surgery Veronika Will Walk
it will be a long road ahead
Veronika has an amazing team of doctors, specialists, therapists and not to forget her peers that are amazing role models
and with their guidance
I’m not going to limit Veronika’s potential
and let Veronika show us what she is capable of
The day Veronika was born we were told 1 in 4 babies with Down syndrome have are born with a congenital heart defect….so later that day Veronika had a heart ultra sound and we were told ‘Veronika has a small hole in her heart and it was nothing to worry about’.
24 hours later Veronika had her 1st ECG and ‘the small hole’ was not so small. It was 8mm, which considering her heart was about the size of a walnut, we were then told ‘it was a significant hole and she would need open heart surgery at some point down the track to repair it’…
Veronika’s heart was closely monitored, and by the time she was 6 months old, Veronika was in the early stages of heart failure, her hole was getting bigger as her heart grew and one of her valves was ‘faulty’. Veronika continued to be closely monitored and around the time of Veronika’s 2nd birthday, her cardiologist sent to referral to the paediatric cardiac surgeon to see if he thought it was the right time to ‘fix Veronika’s heart’. Once we were in Melbourne and the surgeon did his investigations he agreed Veronika’s heart needed repairing, her hole was now 19mm, her liver was significantly enlarged(a sign of heart failure) and her chest was asymmetrical. At that appointment Veronika was moved from category 3 to category 1, and he said ‘go home, keep Veronika healthy and we will operate within a couple of months’.
It was only a couple of months before we went back to Melbourne for Veronika’s surgery. We spent a day doing the pre-op things, before going back to where we were staying the night before surgery.
The day had been full of investigations, tests and questions from the doctors and us. I remember when they were going through all the risks of surgery, they mentioned the risk of a stroke, to which my question was, ‘Veronika had already had a stroke, does that put her at an even higher risk of stroke?’ They weren’t sure as they hadn’t had that question from a parent before…..so all we could do was have faith and believe the following days surgery would be successful.
Only a couple of hours later I received a phone call to say the surgery was off, and the surgeon wanted to see Veronika and us in the morning. Veronika’s hole had reduced from 19mm to 10mm in a couple of months. The surgeon had never seen such a big hole reduce by such a significant amount in such a short amount of time, he was most impressed but couldn’t explain how as this was medically impossible. He said he wanted to wait 6 months and see what was going on then.
So we went home and returned 6 months later, for a follow up and the hole was even smaller. The surgeon sent us off home again for monitoring.
Veronika has been seeing the visiting cardiologist since, and she saw him at the end of November, just over a week ago. At this appointment Veronika again had an ECG, and I was then told by a rather excited cardiologist that Veronika has a ‘normal structured and functioning heart’. The hole is GONE, HEALED, and he wouldn’t need to see Veronika again. He was excited as it’s very reassuring to know her heart is functioning normally before her upcoming hip reconstruction surgery(which we are still waiting for a date, but fingers crossed it’s not much longer).
Veronika continues to write her own book rather than go by the book!
To the people who think its OK to wave their accessible parking permit at me,
Veronika was issued with an accessible parking permit sometime between her 2nd and 3rd birthdays, I don’t know the exact date, as it was something that I didn’t particularly want, but Veronika’s physio suggested I should have one, so I wasn’t carrying Veronika as far. I do know that after I received it in the post, I had a moment, a moment when it hit me that my child had physical restrictions with her mobility, cardiac restrictions with her heart along with other health challenges.
I do know it took me about a year before I actually parked in an accessible parking spot. This was mainly due to Veronika’s physio organizing a car seat for Veronika, that pivots around so I a can lift Veronika in and out of the car without twisting my back, as I was continually in pain from carrying and lifting Veronika. I love the car seat we have, its perfect and suits Veronika and my needs, but to spin it around I need to be able to open the car door all the way, and this is often not practical in a ‘regular parking’ spot , so I started parking in the accessible spots….after all they are wider and I can open the car door all the way, and well Veronika has a permit that allows us to park in them. I don’t always park in the accessible spots, if its a day when we will be using Veronika’s wheelchair(she isn’t walking so we don’t need to be as close to the door as she cant walk far) and there is a park on the end where I am able to open the car door all the way I will often park in that spot and leave the accessible spot.
but the thing is on quite a few occasions over the past couple of years, after I have pulled into an accessible parking spot sometimes before I have even hopped out of our car, I have had people stop their cars in front of mine, and wave their parking permit at me…..on other occasions after I have hopped out of the car and started walking around to the other side to get Veronika out….I can only assume that people see me hop out of the car and think why have I parked there, some times they may see myself and Veronika’s brothers hop out of the car, and wonder why I have parked in the accessible spot, as I head to the back of the car to get her wheelchair out….
I have been told ‘you shouldn’t park in that accessible spot, you should park in the mothers with prams park, because disabled spots are reserved for people like me’….my response was ‘no I am allowed to park in the accessible park, my daughter has multiple health challenges, and has been issued with an accessible parking permit, she uses a wheelchair not a pram so I will leave my car where it is parked. If you have an issue with that please go around the front of my car and write the permit number down and contact service Tasmania to check’….
sometimes I may just by chance enter a car park a few seconds before you, and pull into an accessible spot….you may see me, a ‘young-ish’ Mum get out of my car, and think its then OK to pull your car up in front of mine and wave you accessible parking permit at me…..but you know what ‘its not ok’ for you to do that….don’t assume that because you see a young-ish Mum, that there isn’t a wheelchair in the back of the car….don’t assume on days that I don’t get the wheelchair out. Because that day Veronika may be able to walk the few meters to the shop to get the couple of things we are after, but she wouldn’t be able to manage to walk from the far end of the carpark…..Veronika was never meant to walk, some days she is doing ok and I know she will be able to manage from the accessible park to the shop and back, and some days she wont so we use her wheelchair…
after you have stopped, and waved your permit at me, then once you see me get the wheelchair out of the boot, and then lift Veronika out of the car and into her chair, don’t drop your face as you realize that you made a bad decison to wave your permit at me….just don’t do that to start with. Yes I know that there are people park in accessible parks without permits, but I am not one of them….and when you wave your permit at me, I get upset as I again am reminded that my daughter has life long physical challenges….but then I look at Veronika and see her madly waving and smiling to everyone in the car park and I know that I am blessed, because she is a survivor….