Diagnosis | Lessons from my daughter

I am worried my words can’t do justice to the day we spent at the Clearwater Marine Aquarium.

After 2 years and 8 months working on this, on Monday May 5th, I woke-up and took this picture. My girl slept like a rock the night before. I thought the excitement would keep her awake but I guess the flight and shopping tired her.

I got us all dress in matching outfits. That’s a sight you will not see that often!

We rented a car and started driving from Orlando to Clearwater.

We saw this!

Eventually, this!

And finally these!

It was a gorgeous day in Clearwater.

We were VIP’s 🙂

This is Emily looking at Winter. She had tears in her eyes.

Emily relates to Winter in a way that none of us can see or feel.

None of us!

Which is why I’m worried my words can’t express the magic we witnessed that day.

Since the very first movie preview…

Emily wanted to know more about Winter the dolphin that never gave up.

Winter who, against all odds, survived and now thrives.

Winter, the dolphin who inspires thousands to move forward.

We took a behind the scene tour… We learned about the history of the place, we saw the turtle intensive care unit, Emily asked questions and contributed to the tour.

When Emily heard Winter whistled, it was as if the whole world made sense. She was so happy. She had stars in her eyes.

I probably have a couple of hundreds of pictures of our day. Picking the ones included in this post was challenging.

Here is Emily getting ready to meet Hope (Winter’s buddy) and finally, Emily listening to Mallory and playing with Hope.

I cried while taking these pictures.

I can try to explain why I cried…

When Emily was diagnosed with cri du chat syndrome, we were told she would do nothing.

Never walk, talk, not recognized us, not show or even comprehend emotions.

When I saw her listen to Mallory and reach out to Hope I was slightly overwhelmed.

New parents assume their kids will do things and experience life.

After Emily’s diagnosis, all of our hopes and dreams were crushed.

All those new experiences, small or big, they are all big wins for us!

So, I cried.

Just a couple of tears really.

One tear for my baby girl who struggled with everything from drinking, to gaining weight, to sleeping…

One tear for my 24 year old self who cried so much.

One tear for all the doctor and therapy appointments who took over our lives.

One tear for our crushed dreams who are slowly coming true.

Thank you Becca for your help in making this dream come true.

We saw Winter getting her tail put on.

Emily received the cutest USB key ever made.

Our visit continued at the museum.

And concluded with a Sea Life Safari tour.

Thank you Sunshine Foundation of Canada and Thank you Clearwater Marine Aquarium

This week, I am introducing you to Caroline and Maxwell.

We haven’t had the chance to meet but I sure hope to have the opportunity to one day.

Hi Caroline, Can you tell me about your family?

Answer: Me and my husband live in London, and we have 18 month old Maxwell who, when he was born, had some complications and was admitted to the special care unit. Maxwell had low blood sugar and breathing difficulties. He was diagnosed with a floppy larynx on day 2. We were in the hospital for a week but it felt like a lifetime. I had complications following an emergency c section and the whole experience was traumatic.

Tell me more about Maxwell

Answer: When we got home we struggled to get over our ordeal and was worried about Maxwell as he still had breathing issues. He couldn’t lay on his back for more than a few seconds so changing him was difficult. We would put him to sleep on his side. Maxwell had some mid line issues so further investigations were to take place. The paediatrician ordered genetic testing but didn’t really explain why. At 5 weeks old Maxwell got ill and was admitted to hospital again with pneumonia. On our second day in the hospital the paediatrician came to tell us hat he had received the test results and that was when Maxwell was diagnosed with CdC. We were devastated and to this day our biggest fear has always been that Maxwell may not grow up mentally and may always be a child. All your hopes and dreams for your child go out the window and you just hope for a smile, some form of communication, a laugh….. We have been very lucky with Maxwell. He is doing so well and is such a happy boy. Always smiling and laughing and his fine motor skills are fantastic. He cannot stand or crawl but he bum shuffles and understands so much more than he can communicate back.

Tell me about therapies

Answer: We have weekly appointments with portage and physio along with regular checks for speech and language, endocrine and paediatricians. It’s hard going but all the hard work we put in is worth it.

Tell me a success story.

Answer: Maxwell signed for sleep recently and is starting to try to talk. We are so proud of him.

Here is Maxwell smiling at Christmas.