Dear Tyronne,
You just found out your son has Down Syndrome. You are overwhelmed with everything as it is and finding out your son has a disability, that you know nothing about, when he is already so sick is so scary. If you knew then what you know now, none of us would have anything to worry about, but it’s so gut wrenching being told all of the negative things about having a child with a disability. You and Elise are being told he is going to die and that she could also be in serious danger. It is so much for you to deal with. You want to protect your son but want to protect your partner and you are both being asked to make what seems like impossible decisions. You have always struggled with talking about your emotions and even acknowledging that you’re having a hard time. You are trying to put on a brave face for everyone and be “the strong one” but inside you are falling apart.
You have no idea what this means for your son, Elise, or yourself. Every appointment you go to feels like you are being spoken to in another language. The words and technical terms the doctors and nurses were using were so confusing and infuriating. You feel so annoyed having to ask Elise and her mum after every appointment, what they were saying because to you it just didn’t make sense. One doctor even told you that it wasn’t your choice and Elise is the one who gets to make all of the decisions. It makes you feel angry that someone is telling you that you have no choice in what care is provided to your son. I’m so glad that Elise is so supportive of our choices and opinions and always asked my opinion and what choice I thought was best before making a final decision. She makes you feel so included in Mason’s care even when medical professionals wouldn’t.
We are doing awesome now mate! Mason is so amazing. He is loud, crazy and has so much personality. He has changed me as a person in ways I never thought possible. I get a lump in my throat every time I see him do something new and different. He “seal flops” around the house, I think that’s how he decided he wants to crawl. His favourite word is dad, and whenever someone burps, he tries to burp too. I know you’ll find that funny considering you’re going through so much right now. You’re going to be okay mate, you guys have a roller coaster to go through and a tough couple of years but you are doing great, and most importantly so is Mason.
Written by Tyronne,
Ambassador Mason's Dad.
