today I felt like I failed my daughter…
What other people say about Veronika….Wednesday, January 5, 2011
What other People Say About Veronika Last year I came across a resource called “What I’d Like You to Know About Me” or “About Me” for short. I was offered to opportunity to create one
To google or not to google…Wednesday, January 12, 2011
To Google or not to Google…. To Google or not to Google?, That is the question…..Last October when we saw Veronika’s paediatrician, I asked if we could see a baby neurologist. I was shocked when
Tuesday, January 25, 2011
Stop yelling at me! Another busy couple of weeks have passed. We are back to the normal 4-5 Doctor and allied health appointments a week, so there is still never a dull moment in the
Wednesday, January 26, 2011
Maybe some answers tomorrow!?!? Tomorrow we are off to see Veronikas occupational therapist early in the afternoon, then after that we are off to see the pediatrician. Maybe we might get some answers about the
Friday, February 11, 2011
My Little Climber….. Miss Veronika has learnt to climb! She climbed onto the couch all by herself in late January. I was and still am one very HAPPY Mummy. I have to admit it was
Wednesday, February 16, 2011
Back to the normal routine….. Well our boys Jordan 8 and Jakob 6, have been back at school for 2 weeks, which means that Veronika and I have gotten back into the swing of the
Sunday, February 20, 2011
My Little Project…. When your baby is 1 week old, and she has her 1st MRI and the results aren’t what you thought you would ever hear, let alone something you never want to hear……Veronika
Thursday, February 24, 2011
Thankyou, Thankyou, Thankyou….No really THANKYOU. Oh my goodness, What a week. What started our as my latest blog post, about my little project, to get Veronika a hydrotherapy spa, to give her every chance to
5 years and 4 months ago, at a routine 36 week into the pregnancy checkup my world changed….
It was revealed our yet to be born baby had a severe brain abnormality….
5 years and 3 months ago when Veronika was a week old, she had her first brain MRI….
which showed Veronika had suffered a massive stroke to both sides of her brain, worse on the right side than the left side of her brain. We were told she wouldn’t be able to use the left side of her body and she would never walk….
That conversation I remember like it was yesterday, not 5 plus years ago….
I remember crying an ocean of tears, and then some more….because it wasnt fair, she had already been diagnosed with Down Syndrome, a congenital heart defect, and they were deciding if she needed neurosurgery to place a shunt into her brain to drain the excess fluid….
and now they were telling me she would never walk…
Some time over the next few days I made a promise to Veronika….
that she would walk, and she would walk into her 1st day of kindergarten,
that she would be independent…..and she would walk independently.
…and so the therapy started…
so today I found bitter-sweet…
Today I feel that on some level I have failed Veronika, I have failed on that promise, that she will walk independently.
Today I feel that I havent fulfilled my promise to her…
Today Veronika had her wheelchair fitting.
Today I placed Veronika into the smallest wheelchair I have ever seen
and then she smiled
she then placed her right hand on the wheel and propelled herself forward a little
she knew what to do to ‘make it move’ without being shown
and then she smiled some more
and then I knew I hadn’t failed her,
but that this is independence
not the kind of independence I had imagined over 5 years ago
but independence
Veronika tires quickly, and can’t use her walking frame for long distances. So this will give Veronika a different kind of mobility. A more age appropriate ‘mobility aide’ than her pram…
and it will also be wonderful therapy for her for her left arm and hand, as she will need to use both of her hands…
So after her fitting we went back to school, and Veronika proudly wheeled herself forward just enough to get around the corner to show her classmates, who were just finishing of show and tell(perfect timing!).
After school Veronika’s brothers were excited to see Veronika and Jordan wanted to help Veronika
