While the words, setting and journey may differ, every parent of an individual with Down syndrome experiences this moment; the moment you are told your child has or might have Down syndrome.
Breaking through the walls of time our ambassador parents have laid bare their own raw, emotional, and heartfelt experiences as beautifully written letters to themselves and their families at the moment of diagnosis. We are sharing these cathartic letters in the hope that new, expectant and experienced parents will be able to connect with their stories.
We recommend pairing these beautiful letters with a box of tissues and a hug.
Our first letter comes from Elise, mum to ambassador Mason.
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Dear Elise,
I know you are scared. You’re 18 and you always wanted to be a mum, but you are so worried about being pregnant so young. I am writing to you now at 21, and I have lived almost 2 beautiful years with our gorgeous boy. He is absolutely incredible.
You just found out that Mason has Hydrops Fetalis, but the doctors cannot be sure of the underlying cause of the Hydrops without doing an amniocentesis. Although you were terrified you knew it was a necessary procedure because there were only two possible causes. Our Rhesus negative blood or having a chromosomal abnormality.
When you got the call, you were at work. Thank god Gran was there with you. The doctors told you the results of the amniocentesis, which as you know, were that he had Trisomy 21. Everyone was devastated, not because he had Down Syndrome but because there was no way to treat Hydrops Fetalis when the cause is from a chromosomal abnormality. You’ve been told so many times that Mason was going to die but we have always been his biggest advocate and supporter. You deal with the news of Mason having T21 so well. You were so focused on research and making sure Mason was able to have the best life he could, but you were also overwhelmed about the fact we had no idea what was involved in looking after a child with additional needs. We had no idea what was next. You aren’t sure if you have the ability to cope with everything you would have to face. It’s so scary.
Breathe... just breathe, lots of deep breaths. Everything is going to be okay. Trust your decisions and allow yourself to believe every decision you make is the right decision for yourself and your baby. Make sure you are content with every decision you make because only you know what you are truly capable of. Do your research, reach out to as many people and organisations as possible. Trust your gut. Listen to the advice of the medical professionals, but make your own decision based on your own knowledge and research. “No question is a silly question” ... I still follow that saying now with all of Masons appointments.
Mason and I are thriving, and I know that is something that is scaring you now, but we are doing absolutely amazing. It has been a roller coaster ride and such an emotional few years but it’s been so educational and rewarding. We are all having an amazing life with Mason filled with so much love, happiness, pride, laughter, challenges, tears both happy and sad, fear, and uncertainty. He is off oxygen completely now and we are slowly progressing with his feeding. He is just amazing.
You love him with your whole heart already and I can tell you with absolutely certainty you love him more and more every single day. Sometimes so much it hurts. He makes me prouder than anyone ever has, and he has totally changed me as a person in every aspect. He has taught me more in two years than in I have learnt in my lifetime. He is one of the happiest kids I’ve ever met, considering everything he has had to go through. He will test you in every way and sometimes you will feel like you can’t do it anymore, he makes everything we all go through worth every single bit of pain and heartache, and every challenge he has faced he has taken head on with no fear. He is the most inspiring two year old I’ve ever met. He is challenging, stubborn, resilient, persistent, courageous, loud, hilarious, strong, loving, caring and most importantly he is so, so happy!
He is absolutely extraordinary. I am so proud of him, and I am so proud of you.
