Tomasi & Chloe
Continued...
What did your diagnosis journey look like?
When Tomasi 2 and a half, it was only then that I did I start to seek help with professionals. When you go back and tick all the boxes you then realise that it all makes sense from the extra difficulty, the extra sleepless nights, the love for water and of course that adorable laughter and golden smile. Although my journey has always been a challenge, especially dealing with it all on my own, it has also been rewarding. It’s taught me many lessons in life on a emotional a skill level for sure.
What was the initial reaction when you received your children's diagnosis?
I was late to find out so my sad emotions were already digested near the first 2 years so I was quite relieved that I had some answers. I felt like I had to know everything straight away. From reaching out I have met the most amazing people and I have never looked back. What is the biggest challenge you encountered with the syndrome. The biggest challenge is behaviours. The unnecessary hits and spits, the unknown cause of sickness and seizures, and the countless nappy changes.
Despite all the challenges, is there anything that you are grateful for?
I’m grateful for trying, the effort we all put into give him the best life we can. He is a people person and I’m grateful for the many smiles he’s put on people’s faces.
“I will share with them the word of “Kia kaha”. The meaning in Māori to be strong.
Tomasi has may cultures in his life and the faith of God, consistency to show up
and working on goals that will in time lead to achievements to be proud of.
Reaching out to as much help is always a blessing in never having to feel like you have to face it alone.”
“Remember that smile that lights up the room. Although they can’t talk they will always find a a way to get your attention.”
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