'You are my hero': A mum's letter to her baby with Down syndrome

Tuesday, March 12, 2013
'You are my hero': A mum's letter to her baby with Down syndrome
Veronika Davie

Kylee Davie's four-year-old daughter Veronika was born with Down syndrome, cerebral palsy and a congenital heart defect. She wasn't supposed to live, let alone walk, but last month, Veronika strode into school for her first day with all the other kids. To celebrate World Down Syndrome Day on March 21, Kylee shares a letter she's written for her heroic little girl.

My Dearest Veronika,

Just under five years ago I was asked three little words that changed my life completely: "Are you okay?"

It was April 28, 2008, and I was having my 36-week scan with the gynaecologist. He froze the screen and grabbed a couple of medical books off the shelf. "Yes that (pointing to the screen), looks like that (pointing to a picture in the book)."

In pictures: Veronika's amazing life

You had massively swollen ventricles in your brain and later we found out that you had suffered a massive stroke.

Yet somehow, you survived.

I got up to leave the appointment to go and have an urgent ultrasound to find out more about what was going on in your brain and my OBGYN asked me, "Are you okay?"

I thought I was, but really I wasn't and that is when I had to strap on my seat belt and ride this roller coaster. Those three little words were to change my life completely.

This was just the beginning. A little over two weeks later, we went to hospital to welcome you to the world.

There were many prayers sent out over those couple of weeks — prayers that you would survive your birth, as we were told you might not make it.

Shortly after you were born you let out a cry and my princess, that was the most amazing cry I have ever heard, because then I knew you were okay, you were alive, and ready to tackle life.

You were taken to the Neonatal Intensive Care Unit soon after you were born, where you were to spend just over five weeks.

Later that day you were diagnosed with Down syndrome, and a congenital heart defect we were told would need open heart surgery to repair.

When you were a week old you were well enough to have your first MRI, to see what was going on inside that pretty head of yours. The news was nothing short of devastating.

You had suffered a massive bilateral stroke that should have killed you.

Somehow, you survived but you had catastrophic brain injuries and the doctors told me that you would never walk. I replied, "But that's not fair! She already has Down syndrome!"

I cried for the next two weeks and then I decided they were wrong. Not only would you survive, you would walk into kindergarten on your first day of school.

We started therapy, therapy and more therapy! But at 11 months of age there was another blow — you were diagnosed with cerebral palsy.

Add that to Down syndrome and even the specialists had no idea how to treat you. But I had faith in you — if anyone can accept a challenge my princess, it is you.

The last four years seem to have flown by, yet at the same time they have been painstakingly slow and full of ups and downs.

The lows were devastating. The day you were rushed to hospital, where five doctors had to drill into your shin to get a drip into your bone marrow — all without anaesthetic, because there was no time — was easily the most horrific day of my life. It was something no parent should see their baby go through.

But the highs were pretty amazing, like the day you managed to hold your bottle for yourself for the first time when you were two-and-a-half. I was so excited that you had mastered that skill and also it meant that I was to have an extra two hours in every day because I didn't have to hold the bottle for you.

But the ultimate high was this year on February 6 when you walked into kindergarten for your first day of school, just like I promised you would.

It was the best of days, one I feared would never come after the unexplained seizures you suffered in December, causing your development to regress by more than a year.

We worked incredibly hard throughout January to regain those skills you lost, and I am sure I was easily the proudest parent at school that day.

Your determination and infectious love of life brings joy to everyone around you.

Even with all life's challenges, you wake up every day with a smile.

If someone had told me five years ago that I was about to have a baby with severe multiple disabilities, I wouldn't have believed them, as that happens to "someone else".

I wouldn't have believed a combination of Down syndrome, cerebral palsy, congenital heart defect, severe hypotonia, multiple food intolerances, and epilepsy were even possible — but to me, you are not all of these conditions, you are just Veronika, my amazing daughter.

At some point in a person's life, everyone needs to have someone that inspires them to be the best they can be; someone that is a hero in the true sense of the word; someone that when you are told you will never do something, has the strength and determination to prove them wrong.

In pictures: Veronika's amazing life

Veronika, you are all of those things to me. You are my hero. You challenge me to be the best Mum I can be, to help you fulfil your limitless potential and then just a little more.

For your unconditional love I am honoured to be called your Mum and I believe you survived to change perceptions of people living with different abilities, one person at a time.

Love, your mum Kylee.

If you want updates on Veronika's progress, visit her Facebook page Veronika Will Walk.

Your say: Do you have any messages of support for Kylee and Veronika?

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