To Claire, Me, when I first received the diagnosis that my unborn son would be born with Down syndrome.
Hi
I’m not going to ask how you are because I know exactly how you are. You have just been told by your doctor that your baby would be born with a triplicate copy of his 21st chromosome, meaning that your unborn baby will have Down syndrome. You also have found out that your baby will be a boy, a boy that you had been hoping for. I know that right now your terrified. This was not even on your radar and certainly was not part of the future you had been planning. Your scared about what this means for you, for your husband and most importantly for your 3 beautiful children, Bella, Charlie, and Brandon.
I wont lie, the next few months are going to be hard. You have just faced a new diagnosis and your about to experience new medical terminology, new life expectations and new goals for yourself, your family and for your baby, pretty much new everything. During this time your friends, your family, your workmates are all going to have an opinion and BOY do people love to share their opinion. You’re going to be overloaded with information, especially from doctors. Some of this information will be scary and make you question if you are going to be capable to raise your son.
I am going to say something right now, something that you need to hear. CONGRATULATIONS. Congratulations on your baby, on your baby being the boy that you wanted and congratulations for this new life that you never thought you would ever be a part of. You are the lucky few.
I know your overwhelmed and I know you have shed a lot of tears but let me promise you, that if you knew then what you… I… know now, every single one of those tears would be tears of joy. You see, fast forward a few years later to the you that is now me (confusing right) you will see that you ARE capable, and you are EXACTLY what your son needs. And believe it or not you, your husband and your children need HIM just as much. I honestly believe that he was sent here for a reason and that he is a gift to all who meet him and is lucky enough to have him in their life and I knew this from the moment he took his first breath. When he was born and was laid on your chest, you named him Xavier. He defied all the odds despite a difficult pregnancy and proved in that moment that he was a fighter and that he loves to prove people wrong. He showed that despite any diagnosis or complication he will always show strength and determination.
Having Xavier, a part of our lives has taught us all so many lessons that we did not even know we needed to learn. Xavier has taught us to be brave, strong, to be kind, taught us about complete acceptance, diversity, unconditional love, patience, to appreciate the little things. Xavier has taught and shown me how to be a better human and he has shown me that I have a voice and can be a damn good advocate.
Please remember that all this prenatal testing you have done, can only predict the likelihood of an extra chromosome. That’s it. It cannot predict the colour of your son’s hair (flaming red by the way) or the colour of his eyes (deep blue with diamond like specks), or how he goes NUTS for his favourite food (Chicken Crimpies and chiiiiiiips), or how he automatically covers his eyes and plays “peekaboo” the moment he sees a baby. The tests will not tell you how he jumps in EVERY single puddle possible, his innocence, his cheekiness, his jest for life and how everyone who meets him is better for it.
I wont lie, there will be challenges, there will be times where your exhausted and times where you have had to cancel plans or make rearrangements but isn’t that just parenthood in general?
So, sit back Mumma bear, connect with your State Down syndrome association, stay off google searches, DON’T READ THE COMMENTS, link in with Down syndrome pregnancy support groups (Celebrate t21 is an excellent start) reach out to other T21 mammas and surround yourself with people who love you. You’re going on an adventure, you’re taking the scenic route and you have a pretty rad, totally cute, cheeky, ginger haired, blue eyed, chromosomally enhanced tour guide.
Hi
I’m not going to ask how you are because I know exactly how you are. You have just been told by your doctor that your baby would be born with a triplicate copy of his 21st chromosome, meaning that your unborn baby will have Down syndrome. You also have found out that your baby will be a boy, a boy that you had been hoping for. I know that right now your terrified. This was not even on your radar and certainly was not part of the future you had been planning. Your scared about what this means for you, for your husband and most importantly for your 3 beautiful children, Bella, Charlie, and Brandon.
I wont lie, the next few months are going to be hard. You have just faced a new diagnosis and your about to experience new medical terminology, new life expectations and new goals for yourself, your family and for your baby, pretty much new everything. During this time your friends, your family, your workmates are all going to have an opinion and BOY do people love to share their opinion. You’re going to be overloaded with information, especially from doctors. Some of this information will be scary and make you question if you are going to be capable to raise your son.
I am going to say something right now, something that you need to hear. CONGRATULATIONS. Congratulations on your baby, on your baby being the boy that you wanted and congratulations for this new life that you never thought you would ever be a part of. You are the lucky few.
I know your overwhelmed and I know you have shed a lot of tears but let me promise you, that if you knew then what you… I… know now, every single one of those tears would be tears of joy. You see, fast forward a few years later to the you that is now me (confusing right) you will see that you ARE capable, and you are EXACTLY what your son needs. And believe it or not you, your husband and your children need HIM just as much. I honestly believe that he was sent here for a reason and that he is a gift to all who meet him and is lucky enough to have him in their life and I knew this from the moment he took his first breath. When he was born and was laid on your chest, you named him Xavier. He defied all the odds despite a difficult pregnancy and proved in that moment that he was a fighter and that he loves to prove people wrong. He showed that despite any diagnosis or complication he will always show strength and determination.
Having Xavier, a part of our lives has taught us all so many lessons that we did not even know we needed to learn. Xavier has taught us to be brave, strong, to be kind, taught us about complete acceptance, diversity, unconditional love, patience, to appreciate the little things. Xavier has taught and shown me how to be a better human and he has shown me that I have a voice and can be a damn good advocate.
Please remember that all this prenatal testing you have done, can only predict the likelihood of an extra chromosome. That’s it. It cannot predict the colour of your son’s hair (flaming red by the way) or the colour of his eyes (deep blue with diamond like specks), or how he goes NUTS for his favourite food (Chicken Crimpies and chiiiiiiips), or how he automatically covers his eyes and plays “peekaboo” the moment he sees a baby. The tests will not tell you how he jumps in EVERY single puddle possible, his innocence, his cheekiness, his jest for life and how everyone who meets him is better for it.
I wont lie, there will be challenges, there will be times where your exhausted and times where you have had to cancel plans or make rearrangements but isn’t that just parenthood in general?
So, sit back Mumma bear, connect with your State Down syndrome association, stay off google searches, DON’T READ THE COMMENTS, link in with Down syndrome pregnancy support groups (Celebrate t21 is an excellent start) reach out to other T21 mammas and surround yourself with people who love you. You’re going on an adventure, you’re taking the scenic route and you have a pretty rad, totally cute, cheeky, ginger haired, blue eyed, chromosomally enhanced tour guide.
Written by Claire,
Ambassador Xavier's Mum
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