Dear Kylie,
Tomorrow you are going for your 20 week scan. It should be a time of excitement. A time to see that beautiful baby boy growing and moving inside your tummy. Instead, it is going to be a time of mixed emotions, a time of uncertainty. Tomorrow is the day some abnormalities will be discovered with your boy. A slight hole in the heart, a small (or what they call hypo-plastic) nasal bone. A long day of scanning, as the sonographer tries to get enough pictures for the Doctors.
You will walk away feeling confused, worried and even a little lost. Tomorrow will be the first day of a journey that you never imagined facing and a time where you will ask why me? It will be the beginning of many appointments, all leading to a result of a very high probability that your little boy, growing safely inside you, has Down Syndrome. Life as you know it is about to change. You will be filled with grief, grief for the family you thought you were having, fear for the unknown; will your little boy having any other health challenges, fear for how this is going to change your life, your children’s lives and how will this impact your family.
As you embark on this journey, there are some things I’d really like you to know, things you need to know.
You did nothing wrong…. This wasn’t your age (while the research says the older you are the higher the chance), you will discover that there are a lot of younger women with children with Down Syndrome. It wasn’t your Diabetes or anything else you may question what you could have done differently. Don’t worry about something you had no control over.
Use your village… your family has such an amazing support network. A menagerie of family, friends and acquaintances who will throw out offers of help and support. Who will want to love your little man as much as you do, who won’t see him as anything but a perfectly perfect little boy. You will meet amazing new friends, all travelling down the same path as yourself. These people will become some of your closest confidants, people who can ease your mind, offer words of encouragement and answer any questions you may have. These people will just get you.
Your life is actually about to change for the better… This little boy who is entering your family, so very wanted and surrounded by love, is going to teach your husband, children and yourself, so many life lessons. He will open your children’s eyes to difference and teach them the real meaning of acceptance. They will become his biggest advocates, protecting him but also treating him as just another one of them. Your life will be filled with laughter, joy and love. He will teach you things you may never have even known.
There will be challenges, I’m not going to tell you life will be easy. There will be appointments (lots of them), therapy will be long term but every time a new milestone is reached, you will celebrate hard (you know how hard he has had to work to reach that milestone). The hospital visits will be a time filled with worry and uncertainty but your little man is strong and a fighter, he will prove society and their pre-conceived opinions wrong. He will smash goals set for him, goals you think will take a long time to reach. He will bring a smile to everyone’s faces and melt the hearts of anyone who is blessed to know him or that may pass him in the street.
Finally, use your story to help others… You will not be the last person to receive a diagnosis. Others will face the same or similar journeys. You will soon find comfort in the T21 online community. Pay it forward. Share your experiences. The good times and the hard times. Someone will be listening, so be prepared to reach out and listen to them. Let them know how amazingly perfect their child will be and the story of how the day you received that diagnosis, that you actually won the lottery and that you are now so much richer than you ever were before.
You’re going to be fine,
Me
