Veronika Will Walk

today I reached the end of another tether! almost every morning when I pull off the highway into where I park at my boys school, I get ‘honked’ and quite often i almost have the back of the car ran into. It’s not illegal to pull off the highway into a driveway people, so get over it…..I am allowed to slow down before I pull over. And why do I continue to park in this spot? Because the Principal of the school kindly offered me a park in the staff car park, so I wouldn’t have to carry Veronika as far, and for that I am grateful. especially after injuring my shoulder lifting and carrying her last year.

so whats a girl to do when she reaches the end of her tether with ignorant motorists…..you go to the local council to complain, and when they tell you it’s not their ‘area’ of road they look after, because it’s a highway….you then write a letter to the editor at the Mercury(our local newspaper)…

 

To the motorists on East Derwent Highway in the mornings…..I have been kindly offered a car park in the staff car park at St Cuthbert’s School off the East Derwent Highway in Lindisfarne….why has the Principal kindly allowed me, a parent to park in this car park, because my daughter who is 4, has different abilities (some people would say severe multiple disabilities), and as a result needs to be carried. The Principal thought it would make it easier for me if I didn’t need to carry her as far, and for that I am grateful. What I don’t appreciate is just about every morning, being ‘honked’ at, and often almost being ran into, by impatient motorists as I slow down to pull into the car park, after all it isn’t illegal to pull off a highway into a driveway. If all you have to complain about by ‘honking’ your horn at me in the mornings is that you are slowed down for a few seconds, tell someone who cares….my life would be so much easier if my 4 year old could walk, talk and eat….but until she can I will continue to slow down to pull off the highway into the car park.

So I don’t know if it will get published, but I felt a whole lot better after I wrote it. As I put in the letter, if all you have to complain about is being slowed down for a few seconds in the morning as I slow down to pull off the highway, tell someone who cares, because if that all I had to complain about…….

so I am either at the end of my tether with ignorant motorists…..or it has just hit me that I now have a 4-year-old, who doesn’t walk, who doesn’t talk, and who really doesn’t eat….

but I love her to the moon and back, because she is Veronika, and she is perfect just the way she is

Veronika was really unsettled last night….I am not sure why, as she usually is a fantastic sleeper, which I am sure is one of the main reasons I am still sane….or mostly sane! She woke at 1am, not at all happy, screaming the house down(yes the boys slept through the noise), I settled her back down and put her back to bed, and she screamed again. This happened 4 or 5 times, by which point I decided rather than getting up and down every couple of minutes I would just put her into bed with me….

so this morning I was in a bit of go slow mode….was rather hard to get going this morning, but the alarm went off at 6am and my day ‘officially started’.

My brothers Jordan and Jakob help me open a gift

Nanna and Oma ordered me a custom-made jacket from Homemade James for my Birthday.

I am sitting here looking at the above photo, not only excited because Veronika knew straight away to open the wrapper, but she is using both hands. She doesn’t always use her left hand so beautifully…but this is extra special for me to see. And the ribbon was a hit to carry around this morning too!

Then we took the boys to school and went into town. Veronika spotted her babycino cup in the car as I was getting her out….and she signed ‘coffee’. So I asked her if she wanted a coffee, and she nodded….for those of you worrying I don’t really let her have coffee, she has a babycino.

So we went into Dr Coffee who must make one of the best coffee’s in town, and the staff are so lovely.

Then we wandered off up thru town, to  Veronika’s Occupational Therapy appointment. I didn’t know what to get her for her Birthday, as you would have read in a previous post…so I booked her a therapy session with her OT as its one of her favourite things to do. BUT today Miss Veronika was all out of sorts. Her OT hadn’t seen that side of her before….and yes she could tell there had been an unsettled night.

So after the therapy session we went to meet some friends at the Rivulet Cafe. Its is an awesome place to catch up with friends…..

Crawling around Rivulet Cafe

Babycino time at Rivulet Cafe….that was one of 2 spoonfulls of her babycino she had!

After we had all had our coffee’s we went outside to the playground. The hit was the slide.

Veronika + slide =no fear, head 1st down the slide!

and of course there was swinging too!!!

What a great day….I still can’t believe that Veronika is 4, the past 4 years have gone way too fast.

I can’t believe 4 years have gone since I went to see my OBGYN….I was 39 weeks pregnant, hadn’t slept for two and a half weeks, stressed to the max. I had my bags packed, and I argued with him.

I argued that he needed to put me into hospital and induce me….how could not sleeping for over 2 weeks whilst pregnant be ‘healthy’ for my baby. He didn’t want to induce me, as she was still little, and he was worried her lungs were under developed. We still didn’t know what caused the ‘ventricularmegaly’….the abnormaility in her brain, we didn’t know ‘if’ she would survive her birth, and ‘if’ she did, well I was told I wouldn’t get to hold her before she would be taken to NICU.

I argued, and argued…looking back I guess that was possibly the 1st time I really advocated for her.

After a long discussion, my OBGYN had a look at the specialist ultra sound that had been done less than 24 hours before. At that point, he changed his mind…..and said ‘be there at 5pm this afternoon’

why…

because he was extremely concerned she wasnt getting any nutrition.

and just as well he did….

when she was born the placenta was half-broken down, half the size it should have been.

The most amazing sound in the world would have to be the 1st time you hear your new-born cry, once you hear them cry you know everything is OK…..

but is it really….

for us in that moment, yes everything was OK. Our baby girl had  survived her birth, in a standing room only delivery room, I don’t think another Dr or nurse could have squeezed into the room even if they tried, there were around 30 of them!

our baby girl let out a cry, and at that point I was so relieved….

and when she was passed to me to cuddle….magical is one word that comes to mind….

not only did we get to cuddle her, but we got to cuddle her for around half an hour before she was taken to NICU.

 

My life  changed the day my OBGYN noticed the ‘abnormalities’ in her brain at just over 36 weeks into our pregnancy…but it changed even more the day she was born. Veronika was diagnosed with Down Syndrome at birth, not that I had noticed she had any features of DS, I was just so relieved she was alive, and later that day with a congenital heart defect.

It’s a roller coaster we are riding with Veronika. Some times it seems that we take 1 step forwards and 2 steps back. But I am Blessed to be riding the roller coaster of emotions with such supportive family and friends. I don’t know how I would have got thru the last 4 year without everyone support, family,  friends I have known for years, and friends I have met on this roller coaster.

 

Life is good, actually its great.

But

It’s not always easy, and some days it just sucks to have to fight for what Veronika needs.

I am usually a positive person, and I try to keep this blog positive, after all we are Blessed to have Veronika with us. Being told before her birth “if she survives her birth”, then after her 1st MRI at one week old, being told she had a stroke on both sides of her brain, the worst side her right side of her brain, a stroke that ‘should of killer her’, a stroke that would have ‘killed an adult’

but some how Veronika survived….

and she continues to make me smile.

We are Blessed to have a roof over our heads, and food on the table at meal times. Something that all too often we tend to take for granted. It’s not at all easy living on one income with 3 children, but we are Blessed that my husband has work.

We had only been in our home that we had built for 5 months when Veronika was born, we were going to have a ‘healthy’ baby and after I returned to work after maternity leave I was going to return to work 3 days a week, and life would be relatively ‘comfortable’. We don’t live an extravagant life, and we budget as best we can. We have a veggie garden which always help to save a few extra dollars, especially over summer, but then home-grown veggies are the best….

We are currently struggling with Veronika’s nutrition. Actually its always been a struggle. She is gaining weight slowly, but that’s because she is still on prescription formula, because she has so many food intollerances. What she can eat is restricted…….and what she can eat is also not the cheapest food items, but that’s always the way!

Veronika is my hero, you have probably seen me write that before. For what her little body has been through in 4 short years its amazing she can still smile every day, and bring a smile to the people she sees everyday too. Her therapy is going really well, we have some great equipment at home for her to use every day, but i still have a list a mile long of things I would love for her, but we will get there….

taking life day by day

sometimes half a day, by half a day….

but its a journey I wouldn’t not change…..

and I continue to Dare to Dream…..

 

Isnt it a right of passage for children to learn to ride a bike?

Isnt it something that every parent wants for their child?

To be able to ride a bike….I just assumed my 3 children would ride a bike, after all I grew up riding everywhere, to my friends, to the park, to school and the list goes on.

I always assumed…..

Assumed….assumed…assumed….

I don’t know at what point on our journey with Veronika, that it dawned on me should wouldn’t be able to ride a bike.

Well after all if you don’t use one side of your body, how are you going to hold the handle bars, let alone pedal?

Veronika’s Physio last year was involved with the Freedom Wheels Program…

…and she thought Veronika might just be tall enough for a Freedom wheels bike, either that or she would ‘make her tall enough’….

so we had her measured and Veronika was ‘just tall enough’….

and this week Veronika was presented with her Freedom Wheels….

Veronika was completely overwhelmed to start with, that combined with the fact that she had just been given a biscuit! She was strapped in, and Daddy took the handle and we did a lap around the Good Guys shop in Moonah, where she was presented with her bike.

Here is the link to her hot lap!

What a privilege to be presented with her Freedom Wheels, what an even bigger blessing was the Lions Club of Brighton fully funded her bike.

Veronika wishes to say a big THANKYOU to Tascare Society for Children, TADTAS(the volunteers who made her bike) and of course the Lions Club of Brighton for funding it….you all have not only brought a huge smile to Veronika’s face, but mine too(which I desperatly needed after I reached the end of my tether earlier in the week)….
….and another video to share is one of Veronika’s favourite things to do at the moment….shooting hoops!

 

Yep I am…..today I am finally at the end of my tether with the system.

I believe my baby girl needs a 10-12 week block of weekly speech therapy.

Why…..

She basically doesn’t eat…… Dont get me wrong. She eats crackers and biscuits, drinks her prescription formula from a bottle because she can’t manage to drink from anything else. She eats about 2 tablespoons of yoghurt for breakfast(that’s as much as she will eat), but she isn’t really meant to have that as she is intolerant to dairy.

There she is with her new bowl and spoon, just got to get her to hold it properly!

and she doesn’t talk….well she says ‘Mum’ and ‘No’.  She has a few other words, but no one else knows what she is trying to say. So you could say I am her interpreter, not that I mind as I do love her to the moon and back…and she uses Auslan, but because she has hemiplegia she has her own way of signing because she can’t use both hands, so until you know how she ‘says’ things in Auslan, then you don’t really know what she ‘s signing, that’s if you even know Auslan to start with….

but seriously how hard does it need to be to get what she needs……

Miss V deserves better therapy….or at least some therapy would be nice…..

My baby girl will be 4 in a couple of weeks, and she isn’t asking  for a Princess or Fairy or a whatever themed party…..she wouldnt even know its her birthday soon….and I would have to say as a parent that’s not really fair….

Isn’t celebrating surviving another year worth celebrating in a way your child wants….

Isn’t a lot of the joy of celebrating, the lead up and excitement the child shows?

but is it fair to make the decision on how to celebrate for them?

to party or not to party, that is the question…

Of course we will celebrate, after all another year has passed….another year of Veronika’s life, a life that is so precious.

A life that at one point, 4 years ago we thought might not survive her birth.

4 years ago today, I was at my 36 week pregnancy checkup….just a routine check up as far as I was concerned. That day three little words completely changed my life

“are you OK?”

these were the 3 little words my OBGYN asked me, after he saw something on the ultrasound machine, froze the image on the screen, then went over and pulled his text-book off the shelf, and flicked thru it to he found a picture….

“yes, that(pointing to the ultra sound screen) looks like that(pointing to the image in his text-book)”..

at that point he called up and booked an urgent specialist ultra sound, that I was to have 2 hours later. He explained as best as he could, what he was seeing on the ultra sound screen, ‘some severe abnormalities in the ventricles in her brain’, but something he had only seen less than a hand full of times over his 30+ years of obstetrics, so he really couldn’t give me to much information until after the ultra sound.

I thought I was ok, I thought I had taken in the information he had given me, that was until he asked me

“are you Ok?”

…..lots has happened in our lives between then and now, too much to go into now….

Then there is sadness that your child doesnt really know it’s her birthday coming up……the sadness that she isn’t continually asking for/telling me what gift she would like for her birthday.

The sadness of trying to figure out what to get her…

Its difficult to get something age appropriate because of her delays a lot of things 4 year old girls would ask for aren’t really appropriate for her.

Then there is the fact Veronika needs so much therapy equipment, so I think I could get her the rope and descender she needs for her swing, or make a start on the platform and climbing ladder(I want to start making her own  therapy room at home, with everything set up ready to go so we can work on her fine and gross motor skills), or that swing which also  help develop her core stability, or those puzzles for her fine motor skills….etc….

but what we get for her should be a Birthday gift not a therapy gift….

so that is my dilema….

what do I get for My Princess?